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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”


 

HEALTH AND DISABILITY INSURANCE,
And SOCIAL SECURITY DISABILITY:
A HANDBOOK FOR IBD PATIENTS



By Jennifer C.Jaff

http://www.ibdquiltproject.org/

 

DISCLAIMER: This handbook is informational only, and is not to be considered legal advice or representation. It is not intended to create a formal attorney-client relationship, nor is it intended to solicit clients. Please consult an attorney in your State for State-specific information, and for advice regarding your particular circumstances.

A note about disseminating this handbook: Writing this took a fair amount of time. It was written, and is being disseminated, without charge. All I ask is that you make it available to as many other patients as you can. Leave a copy with your doctor for other patients to read and copy. It also will be available from a link on www.ibdquiltproject.org, for people to download. The more people who have access to this handbook, the more I will feel it was worth the time it took to write. Thank you.

Introduction



Patients with IBD have a range of legal problems that are difficult to resolve without assistance. In particular, my fellow patients ask me many questions about health and disability insurance, and Social Security Disability (SSDI). This handbook is intended to provide general information on those subjects to patients with IBD.

There are a number of legal issues that differ from State to State. The information provided here is general, but not universal. You may need to contact a State agency or private attorney to ascertain the law in your State on a particular issue. For questions about Health and Disability insurance, contact your State’s Insurance Department. For questions about SSDI, start with www.ssa.gov, and see the links relating to SSDI.

Patients with chronic illnesses unfortunately must advocate for themselves, whether it be with a doctor or an insurance company. Knowing your rights will help. If you have internet access, you have access to the best research tool in the world. There is very little that can’t be found out on the internet. If you don’t have a computer, go to your local library, most of which are hooked up to the world-wide web. State agencies have websites, insurance companies have websites, lawyers have websites. For IBD patients, there are two important sites, www.ccfa.org and www.ibdsucks.org. If you can’t find answers yourself, someone on one of those sites will help you.

Your Medical Records



Every State has a law pertaining to a patient’s right to his or her own medical records. The records are yours, not your doctor’s. You are entitled to a copy, although your doctor is allowed to charge a fee for copying (State law usually determines the amount of the copy fee). Generally, you must request a copy of your records in writing. If you have an attorney, your attorney will need to present a release signed by you entitling your attorney to your records.

Getting together your medical records can be a timely step in the process. Do not delay in requesting your records, and after you have made the request, follow up every few days until you or your attorney has the records. Get everything, including colonoscopy and endoscopy reports.

Every once in awhile, I hear of a doctor who will not release a patient’s medical records to the patient. With very limited exceptions, there is no basis in law for this position. [2] If you know an attorney who will help you, get an attorney to write a letter to the doctor on your behalf, citing your State’s law on medical records. If you don’t know an attorney, or can’t afford one, write a letter to your doctor and keep a copy for your file. Get a written denial from your doctor. Then report your doctor to your State’s medical licensing board or agency. A violation of State law is grounds for discipline of a physician, and an outright refusal to provide you with your own medical records is, I believe, a violation of law in every State (with limited exceptions, see footnote).

A Note About Time Periods



Rule number 1: Once you blow a time limit, you lose. No exceptions, no appeals, no recourse. If your insurer sends you a denial that says you have 60 days to appeal and you wait until day 61, you are finished. The same is true of SSA time limits.

If you are waiting for medical records or a letter from your doctor or some other material you wish to submit in support of your claim, go ahead and file within the time frame, and note that you are expecting additional information, which you will submit as soon as possible. Once you submit your timely appeal letter, you can continue to submit new information. But you cannot fail to appeal in a timely manner – period.

Health Insurance



People with IBD need to know certain basic facts about health insurance. First, although employer-based health insurance cannot exclude or limit coverage of pre-existing conditions, individual or association-based health insurance can. The key with employer-based coverage is not ever having a break in service. What that means is, if you change jobs, you must make sure that your coverage is continuous. Federal law requires that you be offered continuation coverage for 18 months after you leave a job, at your expense. I always pay for COBRA benefits for a month overlapping with my new insurance to make sure there is no break, even if theoretically I shouldn’t have to do so. Better safe than sorry when it comes to health insurance coverage for a person with a chronic illness.

COBRA benefits begin when you terminate your employment, although employers have 30 days to get you the necessary enrollment forms and other information. When you leave a job and intend to COBRA, stay on top of your former employer until you receive the necessary information. I once left a job intending to COBRA, but I didn’t get the necessary information for three months, at which time I owed three months of premiums, which was a lot of money to have to pay all at once. Federal law requires that the information be provided within 30 days. Stay on top of it.

If you are not employed, or if your employer does not provide health insurance, you have a number of options, none of them great. I am not aware of any individual policy that will not exclude a pre-existing condition. Many States have high-risk pools for people who are chronically ill. These are very expensive, and many exclude pre-existing conditions for 6 or 12 months. If you are self-employed, you may be able to incorporate and then cover yourself as an employee in a one-person group. In the alternative, you may be able to join a local Chamber of Commerce and get on their group plan. The National Association of Self-Employed has a plan that is not very good and very expensive, but it is there. Many trade associations also have group plans, and if you are older, the AARP has group plans. If you are not working due to disability, you may be eligible for public assistance-based health plans. Check with the State agency in charge of Medicaid or the Social Security Administration for information.

Once you have health insurance coverage, the other big hurdle is coverage for everything you need. IBD patients often have to advocate for themselves to obtain coverage for experimental medication and treatment, enteral feeding, certain blood tests like the Prometheus test for those taking 6MP and imuran, and other treatment. Generally, health insurance covers “medically necessary” medicine and treatment. Some insurers take the position that enteral feeding is not medicine, but nutrition, and therefore not covered. Similarly, insurers take the position that Prometheus is a test to determine the right drug level, rather than a diagnostic test, and therefore it is not covered. Some insurers refuse to pay for B-12 shots because it is vitamin rather than medicine. Most health insurance policies exclude coverage for experimental drugs and treatments.

If you are denied coverage for something you and your doctor feel you need, you should appeal. Approximately 72% of health insurance appeals are successful! Sometimes, it is as simple as writing a letter. For example, when my insurer has denied coverage for B-12 shots that I need because I am missing my terminal ileum due to surgery, I have written a letter and explained that, and it has been covered from then on. Other times, you will need your doctor to assist you in advocating with the insurer. A good doctor should be willing to write a letter on your behalf. Even if your doctor writes, though, you should write, as well, and give them the patient’s perspective.

If all else fails and the treatment at issue is very expensive, you may want to consult an attorney. Quite honestly, when I write on behalf of patients, I almost never lose, not because I am doing anything special, but because I am a lawyer and insurance companies don’t want to litigate. The key, though, is finding a lawyer willing to handle the insurance company appeal only, as opposed to someone who wants to litigate. Litigation over health insurance claims is expensive and complex because employer-based health insurance is governed by a federal law known as ERISA, which requires that you file suit in federal court, and that you meet a very difficult burden of proof. A simple health insurance claim can be resolved with not much more than a letter and a phone call or two; a more complex one may involve review of medical records and such, but in any event, a health insurance appeal can be relatively inexpensive, and may well be worthwhile, especially for expensive claims.

Some States have an additional step after the insurance company internal appeal, and this is called an external appeals. In the States that have external appeals, the Insurance Department has an appeals board that will hear appeals of denials of health insurance coverage. If you get to the external appeal step, you should seriously consider retaining a lawyer to present your case in as professional a way as possible. If you cannot afford an attorney, you can do it yourself, but be prepared and organized. You should bring with you all of your medical records, a letter(s) from your doctor(s), and even a diary or other record of your symptoms. These external appeals, on the whole, are informal, but you should be prepared to present your argument.

In both internal and external appeals, your argument should always be “this is medically necessary.” That is the standard, medical necessity. If you and your doctor can explain why the treatment in question is medically necessary, you will win.

Sometimes, appealing to an insurer’s sense of fairness or compassion will help, especially if what you are asking for is something unique. Insurance companies worry what will happen if they grant your appeal, and whether they will have to do the same for hundreds of other patients. Insurance companies are businesses, and they will focus on costs. If you can demonstrate that your case is one-of-a-kind, or that what you are asking for is short-term, or if there is some other way to demonstrate that the costs will be limited, that may help.

My sense of the process is that insurance companies expect a certain percentage of denials not to be challenged at all, and smaller and smaller percentages to appeal at each successive step in the appeal process. The persistent definitely have an advantage solely because they persist. Of course, that’s harder for those of us who are sicker. But unfortunately, the system rewards the patients who advocate for themselves.

Disability Insurance



If you are fortunate enough to be covered by private disability insurance (short- or long-term), you are one of the lucky ones. The only way that I know of that a chronically ill patient can get disability insurance is in an employer-based group plan.

If you have options about the choice of disability insurance, the most crucial thing to look at is the definition of disability. Some policies pay benefits if you are unable to perform the functions of any job, and others pay benefits if you are unable to perform the functions of the particular job you are in when you buy the insurance. If you have a choice, you want the latter kind, the kind that pays if you cannot perform the functions of the particular job you are in. That means that if I can no longer practice law, for example, I get paid even if I might be able to do something physically easier, like answering phones or doing word processing. The burden of proving that you are disabled is much easier under this type of policy.

If you become disabled, you must file a claim. Again, start with your policy’s definition of disability. What you will have to show is that you meet that definition. If your policy defines “disability” to include the inability to perform any job, you will want to address all of the functions you are unable to perform, and not just those involved in your particular line of work. Your argument should be tailored to the policy definition of “disability.”

The insurance company will ask your doctor(s) to fill out forms, and may ask for your medical records. But be advised that it is up to you to prove that you are disabled. Do not count on your insurance company or your doctor to be your advocate. You must make your case.

Although the standard for SSDI is different from the standard for private disability insurance, you may wish to use it as a guide. See Appendix A. If you can show an insurer that you meet the SSDI criteria, you can make a strong argument that the private insurance standard should not be more difficult to meet because, under SSDI, the claimant must show that he cannot perform his former job, and the SSA then has an opportunity to show that there are other jobs he could perform. Thus, even if your insurance policy says you have to show that you cannot perform any job, the SSDI criteria can be used as a guideline.[3]

You should collect your medical records and submit them to the insurer. You should obtain letters from your doctor(s) in support of your claim. Note that this is absolutely crucial. In some jurisdictions (see Second Circuit, below, for example), the treating physician’s word is binding on the SSA unless it is contradicted by substantial evidence. In addition, you should keep a record of how you feel each day, what you can and can’t do, how many times you go to the bathroom or vomit – every detail of your daily routine matters. See Appendix C for sample SSDI materials, demonstrating the level of detail that is required.

I know that, when you finally decide to apply for disability, it will be because you cannot work. Contrary to the beliefs of many insurers, patients do not want to be on disability; they have to be. That means it will be harder than ever to muster the strength to advocate for yourself. But you must, unless you can afford to hire a lawyer.

Even with a lawyer, be careful. As with health insurance appeals, lawyers will want to litigate. That’s how they make their money. Doing internal appeals is necessary before you are allowed to litigate, and it’s far less expensive. Make sure you have a lawyer that is willing to put on a full-court press at the internal appeal stage, in an attempt to avoid litigation.

Many lawyers take disability insurance appeals on a contingent basis. They will ask you to sign over one-third of whatever you get. I must say that my personal opinion is that this is too high if there is a good possibility of success without litigation. One-tenth is generally more appropriate for cases resolved prior to litigation, since the winnings in a disability appeal tend to be fairly high. It may be difficult to find a lawyer to accept less than one-third on a contingent case, though.

Disability appeals occur in two circumstances: one, your initial application for (or claim of) disability can be denied; and two, your ongoing disability benefits can be terminated on the basis that the insurer thinks you no longer are disabled. In either case, you are entitled to an appeal.

There actually are two ways you can win such an appeal. First, you can convince the insurer that you are disabled, and that they were wrong to deny your claim. If you do that, you will be entitled to benefits retroactive to the date of the application (or if you were on disability and it was cut off, retroactive to the date of the cut-off), as well as monthly benefits going forward. Second, in the alternative, if you have a repetitive problem with an insurer and want it to end, you may seek to buy out your policy. In this case, you can get a lump sum from the insurer that represents some portion of what you could be expected to receive for the duration of your disability. Be advised that, if you follow this route, the policy will be terminated. However, for enough money, that may be worth it to you. I negotiated a buy-out for $250,000 this year – a very substantial payment for my client.

Disability appeals take far more work than health insurance appeals because the stakes are much higher, both for you and for the insurance company. Although an insurance company will retain the right to revisit your case periodically, once you win an appeal, the company knows it will be paying you monthly benefits for some period of time. Unlike a health insurance appeal, it is nearly impossible to appeal to a disability insurer’s sense of compassion because of the amount of money involved. Thus, it is rarely as simple as writing a single letter.

The first thing a disability insurer is likely to do, perhaps even before denying your claim, is to have an Independent Medical Examination (IME) performed. That means you are examined by a doctor hired by the disability insurance company to review your case. Make no mistake – these doctors work for the insurance company. They are looking to find a way to find that you are not disabled.

Your conduct during the IME is very important. Do not try to exaggerate, or they will immediately question your credibility. On the other hand, do not leave out details. The doctor conducting the IME will have reviewed your entire file, but will not know what it’s like to be in your shoes. Make sure you discuss the effects of your illness not only on work, but on your home and family life. If you can no longer clean your house or drive or travel or care for your children, those things are very important. If you are depressed as a result of your illness, that may constitute a separate disability, and you must mention it on your claim form, as well as in your IME. Do not worry about sounding like you complain too much; it is your job to make sure the IME gets a sense of what your day-to-day existence is like.

If you get a good result from the IME – which does happen – you will win. The insurer cannot deny your claim if its own doctor says you are disabled. So the IME is terribly important.

On the other hand, if the IME report says you are not disabled, that doesn’t mean you lose. However, you need to get a copy of the IME report (which will be provided to you by the insurer), and you need to pick it apart, line by line. You need to cite to your medical records and to your treating physicians’ letters and reports to explain what the IME missed and why it was important.

Let me give you an example. I represented a woman who had claimed two disabilities: carpal tunnel to her hands and severe depression. The insurance company had her undergo two IMEs. One IME doctor had a website bragging about results he gets for insurance companies, allowing me to argue that his report was worthless due to bias. The other IME doctor had made a couple of passing comments that actually supported our claim of disability, although you had to read very carefully to pick them up since his overall conclusion was that she was not disabled. But the most important point is that the insurer completely missed the carpal tunnel disability, and only did IMEs on her mental health disability. I cited to every single document in the file that pertained to the carpal tunnel disability to show that the insurer was on notice that she claimed two separate disabilities. My appeal letter was 10 single-spaced pages, going over the file bit by bit. It took a fair amount of time, but it was very successful for the patient.

The most important thing is to stress objective indications of disability. Although you must be clear about how you feel and what your life is like, you will need test results and physician notes to really prove your case. It is critical that you not assume the insurer has everything it should have, or that it fully understands and appreciates it. In your appeal letter, go through your medical chart and demonstrate, by reference to test results and physician notes, that there is objective evidence that you are disabled. Colonoscopic and endoscopic biopsy results, blood test results, CT scans, x-rays – these are objective evidence to show not only that you are sick, but more importantly, that you are not exaggerating. Your credibility will be tested; without getting defensive, you must demonstrate why you should be believed.

Although I don’t have statistics on the number of disability insurance appeals that are successful, I can tell you that I’ve never lost one. My impression is that, if you take the appeal step very seriously, you may well get a positive result without needing to litigate. Litigation of disability appeals suffers from the same complexity as health insurance appeals. If your disability insurance is employer-based, the federal ERISA law governs, and you are subject to a very high standard of proof. So take the internal appeal step very seriously; in my experience, it is by far your best chance of success.

Social Security Disability



The best resource there is for information about the SSDI application and decision process is the Social Security Administration (SSA). The SSA website is www.ssa.gov. If you don’t go there to read everything there is on the process before you apply, you are doing yourself a huge disservice. Really, everything you need to know is there.

There are a number of Appendices to this Handbook that will be helpful, too. First, the SSDI criteria for digestive disorders is reprinted in full in Appendix A. If you are applying for SSDI based on IBD, these are the criteria you need to meet to be considered disabled. Appendix B contains three letters from doctors critiquing the SSDI criteria, which are outdated and far more restrictive than appropriate. For example, the SSDI criteria call Crohn’s disease “regional enteritis,” which is a term that no longer is used by doctors. You can and should submit the letters contained in Appendix B with your application for SSDI. Third, Appendix C contains materials prepared by a patient who was successful in obtaining SSDI on her initial application. These materials are included here to demonstrate the extraordinary degree of specificity and graphic detail that you will have to provide. Nothing is too private.

Most of the IBD patients I know who have applied for SSDI have been denied on the first try. They have moved for reconsideration, and then appealed, and many have won. Most of them advise retaining a lawyer to represent you when you get to the appeal stage. The ability to present evidence and testimony in a persuasive fashion is crucial. Although the hearings are not very technical, it is best to put on a presentation rather than just answering questions. A lawyer will be best able to present your case in an orderly fashion. If you run into a lawyer who isn’t optimistic about your chances, feel free to seek a second opinion, just as you would from a doctor.

There are lawyers around the country who specialize in SSDI appeals. I am not one of them. They accept a standardized fee, typically one-quarter of back benefits if you win, and nothing if you lose. The National Organization of Social Security Claimants’ Representatives (NOSSCR) is the best source of attorney referrals. Their website is at http://www.nosscr.org/. There is a particularly excellent set of FAQs at their website, as well.

In addition to proving that you are disabled (see below), to get SSDI, you must show that you have earned 40 credits (generally, worked 40 quarters in which you satisfied the relatively small earnings requirement), with 20 of those credits occurring in the past 10 years. SSDI is not income-based. If you are disabled and low-income, you may wish to look into supplemental security income (SSI). Dependent children living in your home may also be entitled to benefits.

 


To apply for SSDI, you will need the following information:

* Social Security number and proof of age;
* Names, addresses and phone numbers of doctors, hospitals, clinics and institutions where you have been treated, as well as dates of treatment;
* Names of all medications you are taking;
* Medical records – everything you can get your hands on, including lab results;
* Summary of your employment history;
* Your most recent tax return.

The SSA is supposed to help you gather all this information, but the better you are prepared, the easier their job will be.

You can receive SSDI and work less than the SSA considers “substantial.” Each year, the SSA determines the dollar amount that meets this standard, but through 2003, it is less than $1,000 per month. In truth, though, at least at the time you apply, if you can work at all, it will be difficult to convince the SSA that you are severely disabled.

Once you are determined to be disabled, you will remain on SSDI unless you earn too much or your health improves. When you are granted benefits, your condition will be characterized based on whether improvement is expected. If improvement is expected, your case will be reviewed in about 18 months from when benefits commence; if improvement is possible, review will occur in about 3 years; and if improvement is not expected, review should not occur for 7 years. With a chronic illness like IBD, expect reviews at either 18 months or 3 years.

You can apply for SSDI as soon as you become disabled, but you will not receive benefits until 6 months after disability onset. You don’t have to exhaust your savings; you may be on private disability insurance; and you may even be on sick leave or worker’s compensation.

The first decision step is the initial claim, which is reviewed by a disability examiner. This should take about four months. If the claim is denied, you can request reconsideration, which goes to another disability examiner, and which takes another four months or so. If reconsideration is denied, you can request a hearing before an Administrative Law Judge. You must go through each step before you get to the next.

Over half of the claimants who appeal are granted benefits, which means you should appeal if you are not successful in the initial step or reconsideration. If you lose at hearing, you can appeal to the Appeals Council. This can take more than a year. If you lose at that stage, you can file suit in federal district court, and then you can appeal through the courts, theoretically up to the Supreme Court.

SSA defines disability as “inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months.” You must prove that you meet this definition to get SSDI.

The SSA has developed a five-part test for evaluating disability claims: First, is the claimant currently employed? If so, you lose. Second, does the claimant have a severe impairment? A severe impairment is one that “significantly limits his or her physical or mental capacity to perform basic work-related functions.” Third, does the claimant have an impairment medically equivalent to one specifically listed in the regulations, which list impairments as to which there is automatic eligibility? Fourth, if not, does the claimant’s impairment prevent him from performing work of the sort he has done in the past? Fifth, if so, does the claimant’s impairment prevent him from performing other work of the sort found in the economy (i.e., does the claimant have a “residual functional capacity”)? As to the first 3 parts of the test, medical evidence is necessary. As to the last 2 prongs, vocational evidence, often of a vocational expert, is required.

The finding that you have a severe impairment is primary. Appendix A contains the medical criteria or “listings” for digestive diseases. If you meet one of these listings, you are entitled to benefits with no further analysis. Please note that, under each section of the listing, there are a number of alternative grounds for finding disability. For example, under section 5.07, regional enteritis, you have to be found to have either persistent obstruction or systemic manifestations like arthritis or intermittent obstruction due to abscess or fistula or massive weight loss, but you do not have to have all of these.

Your task is to show either that you meet these criteria set forth in the listing, or that you suffer from a “medically equivalent” impairment. The things to emphasize are the things that relate to the criteria in a listing. You may have additional symptoms that should be discussed, but try to fit your symptoms into the SSA criteria to show that you should be found disabled. If you don’t fit the listing perfectly, focus on showing that your disability is medically equivalent to the listed impairment.

If you have more than one medical condition, the combination of which results in a disability, the SSA should consider the whole picture. The combined effects of IBD and other conditions, such as fibromyalgia or even clinical depression, should be considered in their totality. Do not make the common mistake of failing to detail the emotional toll the illness has on you and your family.

Once you show that you have a severe impairment that is medically equivalent to a listed impairment, the analysis shifts to vocational matters. The first question is whether you are able to perform your most recent job. If so, you are not eligible. If not, then the final question is whether, even with a severe impairment, you have sufficient residual functional capacity to perform other work available in the economy.

“Residual functional capacity” can be determined either by vocational expert testimony or by reference to grids published by the SSA. The grid charts a claimant as disabled or not based on physical capacity, age, education and work experience. If the use of the grid is appropriate, and the grid shows no disability, that decision is unlikely to be overturned on appeal. If the disability is non-exertional, i.e., it does not restrict lifting, walking, standing, etc., and if a finding is made that the non-exertional disability restricts performance of a full range of work at the appropriate residual functional capacity, the non-exertional impairment must be taken into account, and the testimony of a vocational expert is necessary rather than reliance solely on the grids. IBD has both exertional limitations (for example, some patients can’t lift heavy items) and non-exertional aspects (for example, pain).

As you will see, a number of courts believe that people with IBD are able to perform sedentary or light work. You have to be specific enough about how IBD affects your daily life to refute such a belief. Can you clean your house, drive, cook, shop? How many hours a day do you spend in the bathroom? Be detailed about your medications and their side-effects. It is crucial that you explain in detail how IBD affects your daily life.

Federal Case Law



I have pulled every federal court decision that mentions ulcerative colitis or Crohn’s disease. With a few minor exceptions, they fall into four categories: (1) military/veterans’ benefits; (2) employment cases; (3) private disability insurance; and (4) SSDI or SSI. I will summarize only the latter two categories here. [4] The federal courts are organized into Circuits; you should look primarily at the Circuit in which your State is located (see below).

The federal courts’ rulings on SSDI and SSI are binding on the SSA. The cases will give you guidance in how the SSA criteria will be interpreted, and therefore will help you to make your case to the SSA. Again, emphasize the things the SSA and the courts say are important. Feel free to share these case citations with your attorney if you have one. Note that even though SSDI and SSI are federal programs, there are differences in the legal rules in different jurisdictions. For example, see the following cases on the treating physician rule in the various Circuits. The SSA in your jurisdiction is bound only by the cases in your Circuit.

Private insurance cases are binding on the courts in the particular jurisdiction. You may use them as guidance to be able to argue to an insurer what a court would do if you pursued your case to litigation. In the absence of private insurance cases on ulcerative colitis or Crohn’s disease, you may use SSDI cases as persuasive authority. Note that a private insurance case that arises out of an employment-based insurance plan is likely to be governed by ERISA, which is extremely complicated. You should not try to litigate such a case on your own. Use the cases set forth below as assistance in arguing to the insurance company in the context of an appeal, but do not try to represent yourself if the case proceeds to court.

The federal Courts of Appeals (or Circuits) bind the lower federal District Courts. So the best case law you can cite in your jurisdiction will be the Circuit court, with District Court decisions also being helpful, but not as strong authority. Newer cases are better authority than older ones, but the most important thing is the similarity in the facts between your case and the case before the court.[5] If there are no analogous cases in your jurisdiction, you can refer to cases in other jurisdictions, but with the understanding that they are persuasive only, and not binding on the courts in your jurisdiction.

Also note that I have searched only for federal cases. There would be State court cases on private insurance issues, as well.

The hardest thing about reviewing and summarizing the case law for me was not commenting on some of the less accurate statements about IBD, especially in the earlier cases. For those of you who know me, you can read in sarcastic comments where appropriate.

First Circuit (Massachusetts, New Hampshire, Rhode Island, Maine, Puerto Rico)

Bulpett v. Heckler, 617 F.Supp. 850 (D. Mass. 1985) – SSDI appeal of 51 year old woman with ulcerative colitis, regional enteritis and erythema nodosum. The SSA found that she was capable of performing light work, which is defined as lifting no more than 20 pounds at a time with frequent lifting or carrying of objects weighing up to 10 pounds, as well as a good deal of walking or standing, or if sitting, pushing or pulling with arms or legs. The court found that the Administrative Law Judge did not carefully analyze the medical records and the report of the claimant’s treating physician, which documented two disabling impairments, Crohn’s disease and arthritis of the spine. In addition, the court found that the ALJ had not properly considered the claimant’s assertion of pain, as confirmed by objective medical evidence. Finally, the court found that the ALJ erred in failing to consider “the cumulative effect of [the claimant’s] impairments.” “It is inappropriate to view several disabilities as isolated from one another.” The need to frequently use the bathroom would interfere the claimant’s performance and, thus, it, too, is relevant.

Kaufman v. Sullivan, 1992 WESTLAW 717818 (D.N.H. 1992) – SSDI appeal by 31 year old with ulcerative colitis and proctitis, who was required to spend hours a day in the bathroom, rendering her unable to work for that period. These conditions caused rectal bleeding, uncontrolled bowel urgency, diarrhea, cramps, gas, back pain, nausea, etc., etc. The court reviewed the medical records in great detail. The court said subjective complaints of pain are to be considered if confirmed by objective evidence. The court applied section 5.06 (see Appendix A) and found that the claimant had severe ulcerative colitis. The court also found that a claimant need not prove an inability to engage in gainful activity every day of his or her life; “episodic illnesses can constitute disabilities. . . .”

Rohrberg v. Apfel, 26 F.Supp.2d 303 (D. Mass. 1998) – SSDI appeal by patient with Crohn’s disease and depression. The court stated a detailed test for consideration of pain, looking at (1) nature, location, onset, duration, frequency, radiation, and intensity of pain; (2) precipitating or aggravating factors; (3) type, dosage, effectiveness, and adverse side effects of pain medication; (4) treatment other than medication; (5) functional restrictions; and (6) the claimant’s daily activities. The ALJ failed to apply this test and, thus, failed to adequately examine the claimant’s subjective claim of pain. The court found that the unpredictability of the claimant’s condition on any given day made it difficult to commit to even part-time work. Further, the court stated that sporadic or transitory activity does not disprove disability. “Disability does not mean that a claimant must vegetate in a dark room excluded from all other forms of human and social activity.” The fact that the claimant might be able to work on some days, with frequent bathroom breaks, did not determine a residual functional capacity.

Babin v. Apfel, 1999 WESTLAW 33117080 (D.Me. 1999) – SSDI appeal in which claimant suffered from Crohn’s disease, and substance addiction. The claimant failed to “exhaust administrative remedies,” meaning he failed to appeal an adverse decision on his claim for benefits by an Administrative Law Judge before going to court. The claimant said he failed to appeal to the Appeals Council in a timely manner because he was mentally incapacitated at the time. Although mental incapacity may excuse a procedural default, the claimant must prove mental incapacity, i.e., inability to read or write; lack of facility with English; limited education; or mental or physical condition limiting claimant’s abilities.

Second Circuit (New York, Connecticut, Vermont)

Fandino v. Secretary of HHS, 1987 WESTLAW 16150 (S.D.N.Y. 1987) – SSDI appeal by a claimant with ulcerative colitis. Treating physician reports have special evidentiary value, according to this court. It is binding on the SSA unless there is substantial evidence to contradict it.

Alfano v. Bowen, 1988 WESTLAW 23542 (E.D.N.Y. 1988) – SSDI and SSI appeal by claimant with ulcerative colitis. Denial of benefits affirmed on technical grounds.

Trapani v. Bowen, 1990 WESTLAW 59555 (E.D.N.Y. 1990) – SSI appeal by claimant with Crohn’s disease who appeared without an attorney. The court said the Administrative Law Judge has to more carefully review the record when the applicant is without counsel.

Espinar v. Shalala, 1995 WESTLAW 679236 (S.D.N.Y. 1995) – SSDI appeal by male with a variety of gastrointestinal ailments, including peptic ulcer, hiatal hernia, reflux, and duodenitis, and eventual diagnosis with irritable bowel syndrome. The court said that it can order the SSA to consider new evidence which is material if there is good cause for the failure to incorporate it earlier in the proceedings. Here, evidence of bleeding would be material. The claimant asserted that he had recently been diagnosed with Crohn’s disease, as well, and the court held that it can order the SSA to consider evidence that existed at the time of the hearing, but which was not fully appreciated at that time. The court held that the claimant was entitled to present this new evidence.

Henriquez v. Chater, 1996 WESTLAW 103828 (S.D.N.Y. 1006) – SSDI appeal by 45 year old man with ulcerative colitis. The court found that the failure of the Administrative Law Judge to mention the treating physician rule (the report of the treating physician is binding unless contradicted by substantial evidence) was reversible error. The court pointed to evidence that supported the treating physician’s statement that the claimant was disabled, including testimony of the claimant that he takes public transportation to doctor appointments only with great difficulty, often needing to go outside of the subway to find a restaurant bathroom to use. The existence of “non-exertional impairments” requires the SSA to call a vocational expert to determine whether the non-exertional impairments significantly diminish the claimant’s ability to perform even light work. Finally, a claimant’s testimony about pain may not be discounted solely because objective clinical findings cannot establish a cause for pain, the court said.

Harris v. Chater, 1998 WESTLAW 19977 (E.D.N.Y. 1998) – SSDI appeal by 35-year old male with Crohn’s disease. “Because plaintiff defecates repeatedly, he experiences malabsorption of nutrients. He has severe diarrhea, abdominal pain, nausea, cramps, and other symptoms.” The Administrative Law Judge found that he could no longer perform his previous job, but could perform a range of sedentary work, involving lifting no more than 10 pounds at a time, with a certain amount of walking and standing occasionally. The court restated the treating physician rule, and then engaged in a long and detailed discussion of the amount of work that can be done at home, in light of technological advances. The court also stated that the Americans with Disabilities Act may create an obstacle to disabled people re-entering the workplace because a number of courts have found that a finding of disability by the SSA precludes an employee from claiming to be able to perform the essential functions of their job under the ADA. After this interesting philosophical discussion, the court found that the claimant was disabled and remanded to the SSA for calculation of benefits. See also Harris v. Chater, 998 F.Supp. 223 (E.D.N.Y. 1998) – three months later, the decision is amended slightly.

MacMillan v. Provident Mutual Life Ins. Co., 32 F.Supp.2d 600 (W.D.N.Y. 1999) – long-term disability claim brought by former employee with ulcerative colitis alleging miscalculation of benefits, and eventual termination of benefits. The case is brought under the Employee Retirement Income Security Act (ERISA). First, only the plan and the administrators and trustees can be named as defendants in an ERISA claim for benefits. Second, there is no discretion involved in calculating benefits; the formula in the plan should be followed (this point deals with a technical ERISA issue, whether the plan administrator’s decision should be reversed only if arbitrary and capricious, or whether the court should review the plan administrator’s decision de novo, anew. If you have a case in which this matters, you need a lawyer). On the proof necessary to establish disability, the court said that, under this policy, the initial disability determination depends on whether the claimant could not perform the material duties of his regular occupation, but after 24 months of disability, the insurer would review to determine whether the insured could not perform the material duties of any gainful occupation for which he is reasonably fitted by training, education, or experience. The court found that a trial on that issue would be necessary. [Note that in the absence of a reported decision concluding the case, the likelihood is that the case settled.]

Gallardo v. Apfel, 1999 WESTLAW 185253 (S.D.N.Y. 1999) – SSI appeal by woman with Crohn’s disease, with fistulas, allergies, and back problems. The Administrative Law Judge found that she could perform sedentary work, at least in part because her Crohn’s appeared to be in remission based on the latest colonoscopy. The court said that, although Crohn’s disease may be disabling in some cases, since the claimant was in remission at the time of her hearing, her symptoms were not as severe as those recited in other cases in which claimants had required repeated hospitalizations, surgery, and many medications.

Medoy v. Warnaco Employees’ Long Term Disability Ins. Plan, 43 F.Supp.2d 303 (E.D.N.Y. 1999) – Claimant initially was granted long-term disability benefits, as well as SSDI. However, about 3 years later, benefit payments were terminated without notice. Plaintiff sought resumption of her benefits and a statement of the reasons for termination, and receive no response. She then requested a copy of the plan, and her employer directed her to the insurer, which stated that it had destroyed her file and, thus, her requests for information could not be granted. She appealed the termination of benefits, which also received no response. She then filed suit under ERISA, challenging the failure to provide plan documents upon request (if you ask for a copy of the plan, the plan administrator must provide it within 30 days or risk a penalty of $100 per day), the failure to retain records (they must be retained for 6 years), and the termination of benefits. The court denied the motion to dismiss these claims. [Note, again, since there is no subsequent opinion in this case, the likelihood is that it settled.]

Third Circuit (New Jersey, Pennsylvania, Delaware, Virgin Island)

Nester v. Bowen, 1986 WESTLAW 12936 (E.D.Pa. 1986) – SSDI and SSI appeal by male with ulcerative colitis, skin cancer, and a shortened leg due to childhood polio. The SSA found he had a non-exertional impairment but could perform sedentary work. Because claimant credibly testified that he cannot sit for long periods without putting his legs up, the court reversed and found he was disabled.

Shaw v. Unum Life Ins. Co. of America, Inc., 1989 WESTLAW 52713 (D.N.J. 1989) – attorney with ulcerative colitis applied for disability benefits under an insurance policy, and was denied. The insurer claimed that he failed to disclose his condition on his application, and sought to refund all premiums paid to date and cancel the policy. Although an applicant must answer questions on an insurance application honestly, he need not volunteer more information than is sought.

Miller v. Bowen, 1990 WESTLAW 10054 (E.D.Pa. 1990) – SSDI and SSI appeal by woman with Crohn’s disease. Pain must be considered in making a disability determination when confirmed by medical evidence establishing the cause of the pain. The evidence was not sufficient to find that the claimant’s impairments were disabling.

Koehne v. Sullivan, 1990 WESTLAW 164718 (W.D.Pa. 1990) – SSI and SSDI appeal by woman with Crohn’s disease. The Administrative Law Judge found that the claimant’s most dramatic symptoms occurred only when she failed to comply with prescribed medical treatment. The court agreed that there was evidence that claimant was capable of performing light work. However, the court found that consideration of non-compliance with medical directives was inappropriate here because the claimant failed to take her medication only when she lacked the money to buy medication, and because she suffered from psychiatric problems. Thus, the court remanded the case to the Secretary for further consideration of these factors.

Roberts v. Shalala, 1994 WESTLAW 285039 (E.D.Pa. 1994) – SSI appeal by man with Crohn’s disease. Administrative Law Judge found that he was capable of light work. The court found that treating physicians’ opinions should be given great weight unless a history of conservative treatment is inconsistent with the opinion that the claimant is totally disabled or when the opinion is conclusory. The court agreed with the ALJ that the claimant’s bouts of Crohn’s disease were intermittent and controlled by medication, that he would not need excessive bathroom breaks, and that he had not lost a lot of weight. The court said that subjective complaints of pain are to be considered to the extent they are not inconsistent with medical or other evidence.

Phillips v. Chater, 1996 WESTLAW 457183 (D.N.J. 1996) – SSDI appeal by male with diverticulosis and osteoarthritis. Although the Administrative Law Judge found that his impairments were severe, he also found that he could perform the functions of his prior job as a sales representative. The court found that substantial evidence supported this conclusion. The court said that the treating physician’s opinion will be given controlling weight if it is well supported by medically acceptable clinical and laboratory diagnostic techniques and is not inconsistent with the other substantial evidence in the record. Also, subjective claims of pain are considered when the pain stems from a medically determinable impairment which can reasonably be expected to product the pain complained of.

Ricci v. Apfel, 159 F.Supp.2d 12 (E.D.Pa. 2001) – SSI appeal by claimant with Crohn’s disease, schizophrenia, and sacroilitis seeking Disabled Child’s Benefits. The court explained that this particular benefit only applied if the impairment was disabling prior to the claimant’s 22nd birthday. Here, there was insufficient medical evidence to support such a conclusion.

Romani v. Commissioner, 35 Fed. Appx. 39 (3rd Cir. 2002) (unpublished decision, not binding authority) – SSDI appeal by claimant with ulcerative colitis. The court found that the Administrative Law Judge failed to give sufficient weight to the opinion of the treating physician, which was supported by other medical evidence, and because the ALJ failed to give due consideration to the claimant’s reports of pain, which were consistent with the diagnosis.

Fourth Circuit (Maryland, Virginia, North Carolina, South Carolina, West Virginia)

Peck v. Ribicoff, 193 F.Supp. 450 (E.D.Va. 1961) – SSDI appeal by male with ulcerative colitis, accompanied by hemorrhagic bleeding and extreme weight loss. The claimant had been hospitalized for long periods of time. However, after claimant’s application for disability was denied, his doctor wrote the Secretary reporting some improvement in his condition, but later, it again worsened. A number of ups and downs followed. The court found that the claimant could not engage in substantial gainful activity.

Caldwell v. Celebrezze, 238 F.Supp. 696 (W.D.S.C. 1964) – SSDI appeal by claimant with ulcerative colitis. Claimant’s treating physicians opined that she was permanently disabled, and there was nothing in the record contradicting this. The claimant’s complaints included uncontrollable diarrhea, and she was unable to do housework. The court found that it was unreasonable to think that anyone would hire this woman due to concerns about attendance and potential liability. Thus, she was disabled.

Brown v. Sullivan, 927 F.2d 595 (4th Cir. 1991) – SSDI and SSI appeal by male with ulcerative colitis and other impairments. He testified to 10-15 bowel movements per day, incontinence at least 3 times per week, and other symptoms. The Administrative Law Judge found him capable of performing light work. Subjective complaints were disregarded because the claimant was not credible based on numerous inconsistencies in the record. The court also stated that the treating physician rule in the Fourth Circuit is that the treating physician’s opinion is given great weight and may be disregarded only if there is persuasive contradictory evidence, as there was in this case. Finally, the ALJ properly considered the combined effects of the claimant’s impairments.

Fox v. Shalala, 30 F.3d 129 (4th Cir. 1994) (unpublished opinion, not binding authority) – SSDI appeal by woman with ulcerative colitis and chronic fatigue. The court found that substantial evidence supported the conclusion that she was not disabled because she only required hospitalization once, and responded well to medication most of the time.

Barina v. Shalala, 35 F.3d 555 (4th Cir. 1994) (unpublished opinion, not binding authority) – claimant with Crohn’s disease appealed denial of SSDI benefits. The court affirmed the denial on the ground that the claimant was working at the time of her application, and there was no continuous 12-month period when she was unable to work, nor was she forced to quit her job due to her impairment.

McCoy v. Apfel, 1998 WESTLAW 213701 (W.D.Va. 1998) – SSDI appeal by a female claimant with Crohn’s disease. The Administrative Law Judge found that found that the claimant was capable of performing sedentary work. The court said a treating physician’s statement is accorded great weight, but not controlling weight if it is not supported by substantial evidence or if it is inconsistent with substantial evidence. The ALJ found that the claimant’s subjective claims of pain were not credible, and the court found that this finding was supported by substantial evidence. The court said that the treating physician’s opinion can be called into question if it “overly derives from a claimant’s subjective reports of pain.”

Williamson v. A.T Massey Coal Co., Inc., 56 F.Supp.2d 656 (S.D.W.Va. 1998) – coal miner brought claim for long-term disability benefits for leg pain, depression, Crohn’s disease and stress. This case was brought under ERISA. The court found that the Plan did not properly analyze the medical evidence. The decision pertains to an analysis of the claimant’s back pain, with essentially no discussion of Crohn’s disease.

Hawkins v. Massanari, 2001 WESTLAW 1191107 (W.D.N.C. 2001) – SSDI appeal by female claimant with Crohn’s disease, back problems, and other impairments. The Administrative Law Judge found that the claimant had a severe disability, but was able to perform light work as long as she was near a restroom. The ALJ also pointed to the fact that she had not lost a significant amount of weight. The court found that the treating physician rule only applies to the doctor who is treating the patient over time, not a consultant who examines her for purposes of SSDI. The finding that the claimant had the residual functional capacity for light work was supported by substantial evidence that she was able to walk and engage in a range of daily activities.

Williamson v. Barnhart, 2002 WESTLAW 165105 (W.D.N.C. 2002) – SSDI appeal by a female claimant with fibromyalgia, arthritis, TMJ, migraines, and “possible” Crohn’s disease or irritable bowel syndrome. The Administrative Law Judge found that the claimant had sufficient residual functional capacity to work without standing, walking or sitting for more than 6 hours, and without exposure to cold temperatures. The ALJ questioned the claimant’s credibility. The court found that the credibility determination was supported by substantial evidence, and that the ALJ was correct in finding that there was objective medical evidence to indicate that subjective claims of pain were not determinative in the absence of objective medical evidence. Finally, the court found that the treating physician’s opinion could be disregarded to the extent it pertained to vocational conclusions rather than medical ones.

Walls v. Barnhart, 296 F.3d 287 (4th Cir. 2002) – SSDI appeal by male claimant with Crohn’s disease who claimed that his condition requires that he be able to sit or stand at his option during a regular work day. The Administrative Law Judge concluded that he was not disabled because there are a number of jobs he could perform, even with that restriction. This conclusion was based on testimony of a vocational expert. A SSA policy statement noted that unskilled and light work was typically structured so as to preclude a sit/stand option, so the claimant argued that the vocational expert’s testimony contradicted this SSA policy statement. The court found that the two were not necessarily contradictory, and that the ALJ’s conclusion was supported by substantial evidence.

Fifth Circuit (Texas, Louisiana, Mississippi)

Scharlow v. Schweiker, 655 F.2d 645 (5th Cir. 1981) – SSI disability appeal by a 56-year old woman with anxiety and an unspecified gastrointestinal problem, variously diagnosed as ulcerative colitis or regional ileitis. The claimant argued that her subjective symptoms were not given adequate consideration. The court said that pain itself can be disabling, even when its existence is unsupported by objective medical evidence if linked to a medically determinable impairment. In this particular case, the court found that the claimant’s subjective evidence of pain was not adequately considered.

Bierman v. Bowen, 1987 WESTLAW 6267 (S.D.Tex. 1987) – SSDI disability appeal by a patient with an ileostomy due to ulcerative colitis, according to the court. First, the court explained the burden of proof. The claimant has to burden of proving the disability. Once the claimant proves that he no longer can perform his previous work, the burden of proof shifts to the Secretary to prove that the claimant can perform other work. The court found that the fact that the claimant performs some work on a sporadic basis does not defeat his claim of disability.

Lopez v. Secretary of HHS, 1992 WESTLKAW 317394 (N.D.Tex. 1992) – SSDI and SSI appeal by 49 year old with ulcerative colitis and other impairments. The issue was the date of disability onset. The court explained the importance of treating physicians’ statements, which should be accorded “considerable weight” unless it is so brief and conclusory, and unsupported by clinical evidence, so as not to be reliable.

Eaves v. Secretary of HHS, 877 F.Supp. 334 (E.D.Tex. 1995) – SSDI appeal by patient with Crohn’s disease and other impairments. The court explained that its role is to decide if substantial evidence supports the SSA’s determination. In answering that question, the court should look to objective medical facts, diagnoses and opinions of treating physicians, claimant’s subjective evidence of pain, and claimant’s educational and employment history. The claimant must show that he or she suffers from an impairment and that the impairment precludes him or her from engaging in substantial gainful employment. The court reviewed both the objective medical evidence and the claimant’s subjective symptoms, including diarrhea and pain. The Administrative Law Judge had secured an independent medical examiner, who found little documented evidence of Crohn’s disease. The court said that pain itself is considered disabling “only when it is constant, unremitting, and wholly unresponsive to therapeutic treatment.” Where there is no objective confirmation of subjective complaints of pain, the subjective complaints can be discounted. The court found that substantial evidence supported the denial of disability benefits.

Cummings v. Apfel, 2000 WESTLAW 343357 (E.D.La. 2000) – SSI appeal by female claimant with non-specific gastrointestinal complaints and other impairments, including back pain and depression. The court explained that an individual’s combined impairments may constitute a disability, even when each individual impairment alone does not. Because the claimant’s impairments were “fragmented” and viewed in isolation by the Administrative Law Judge, the court rejected the ALJ’s conclusions.

Sixth Circuit (Ohio, Michigan, Tennessee, Kentucky)

Sheets v. Bowen, 875 F.2d 867 (6th Cir. 1989) – SSDI appeal of female claimant with Crohn’s disease. The court affirmed the denial of benefits. The claimant alleged that she suffered from recurrent, intermittent, unpredictable and variable diarrhea, bloating, swelling, nausea, and pain. She used the bathroom 7-8 times per day in normal circumstances, and 10-14 times during a flare. The Administrative Law Judge did not find her claim that her symptoms precluded her from working to be credible. The court found that the claimant’s condition did not meet the definition of regional enteritis in section 5.07, set forth in Appendix A, nor was it the “medical equivalent” because she could not show persistent or recurrent obstruction, fistula formation, abscesses, or ulceration. The treating physician’s opinion must be supported by objective evidence to be entitled to deference, and subjective complaints of pain also must be supported by objective medical evidence that could be expected to cause disabling pain.

Robbins v. Secretary, 876 F.2d 895 (6th Cir. 1989) (unpublished decision, not binding authority) – SSDI appeal by a female with Crohn’s disease, hepatitis, hypertension, and other impairments. The Administrative Law Judge found that the claimant has the residual functional capacity to perform sedentary work. The court affirmed the basic rule that the role of a reviewing court is only to determine if substantial evidence supports the decision of the SSA, not to reexamine the evidence de novo, anew.

Kinney v. Secretary, 953 F.2d 644 (6th Cir. 1992) (unpublished decision, not binding authority) – SSDI appeal by a male with Crohn’s disease and back pain. The Administrative Law Judge found that the claimant retained the ability to perform sedentary work. The claimant argued that testimony of a vocational expert was necessary to evaluate the effects of Crohn’s disease, a non-exertional impairment. The court said the claimant had the burden of showing he could not perform sedentary work due to his non-exertional impairment.

Stone v. Secretary, 1992 WESTLAW 466907 (N.D.Ohio 1992) – SSDI appeal by male with “Krohn’s Disease,” which the court thought was another name for ulcerative colitis. The claimant had spent 6 months in a hospital, and had undergone surgery. However, also during the years in question, the claimant had engaged in work in one of two businesses he owned. Absent proof of a continuous 12-month period during which the impairment prevented him from working, he cannot be considered disabled, said the court.

Fitchet v. Chater, 89 F.3d 833 (6th Cir. 1996) (unpublished decision, not binding authority) – SSDI appeal by a female claimant with Crohn’s disease. The court explained that a treating physician’s opinion is afforded more weight than the opinion of a physician who is employed by the government, although the final decision rests with the Administrative Law Judge. Finally, objective evidence did not confirm that the claimant was disabled by pain. The finding of no disability was ffirmed.

Kaufman v. SMA Life Assurance Co., 114 F.3d 1187 (6th Cir. 1997) (unpublished decision, not binding authority) – claim for enforcement of a disability insurance policy by an attorney with a policy that defined disability as inability to engage in the insured’s regular occupation, i.e., the occupation the insured was in when the disability begins. The insured had ulcerative colitis, forcing him to stop working as a trial attorney, and to take a job as an appellate lawyer for a Legal Services organization and eventually to claim total disability. Although the jury found for the plaintiff, the court reversed the jury’s decision, finding that there was no evidence that the plaintiff could not engage in any aspect of trial lawyering.

Cousins v. Spartan Chemical Co., 142 F.3d 432 (6th Cir. 1998) (unpublished decision, not binding authority) – denial of long-term disability benefits to a male with Crohn’s disease, on the ground that he had not yet been disabled for more than 90 consecutive days, as the policy required. The insured argued that the employer had allowed him to go back to work so that it could fire him without him qualifying for long-term disability benefits. The court rejected this claim based on the record. The court said “[w]e have no doubt that the medical condition from which the plaintiff suffers is periodically debilitating and that it makes his working life more difficult than it would otherwise be.” However, the court found that he was not disabled under the policy definition.

Risner v. Commissioner, 168 F.3d 490 (6th Cir. 1998) (unpublished decision, not binding authority) – SSDI and SSI appeal by female claimant with Crohn’s disease. The Administrative Law Judge found that she could perform a significant number of jobs in the economy. Her treating physician supported the conclusion that she could perform sedentary work.

Kerwin v. Paul Revere Life Ins. Co., 6 Fed. Appx. 233 (6th Cir. 2001) (unpublished decision, not binding authority) – insured with Crohn’s disease brought an action for disability insurance benefits. The plaintiff was a criminal defense attorney. The policy defined “total disability” as the inability to perform the important duties of the insured’s occupation and the insured is under the care of a physician. The plaintiff was in so much pain that he turned his cases over to other lawyers and even refunded fees to some clients because he could no longer do his job. He eventually had a colostomy, after which he had no active disease, but had the possibility of recurrence. The insurer paid benefits until the insured began full-time work as a judge in a temporary position, when the insurer terminated benefits. The insurer claimed that the insured chose not to return to work as a criminal defense attorney, even on a part-time basis with a modified work schedule. The court considered the insured law practice prior to his disability, as well as the nature of the temporary judicial position he had accepted, and found that being a judge is less stressful than being a litigator. The court found no evidence that the insured made a lifestyle choice, as opposed to making a decision based on his disability. Thus, the court found that disability benefits should be granted, although the question was not so clear as to warrant an award of statutory interest. The court needed more briefing on the issue of attorneys fees.

Sieggreen v. Unum Provident Corp., 2002 WESTLAW 31357045 (E.D.Mich. 2002) – insured was an ob-gyn physician with ulcerative colitis. He had cut his hours in half and curtailed the obstetrical part of his practice. He filed a claim for disability benefits, which was approved as a claim for partial disability. The dispute centered on the proper amount of disability payments, which was contingent on the amount of the insured’s basic monthly earnings, reduced by any pension plan payments. The policy definition of “disability” was that the insured was unable to engage in any subsequent gainful activity due to a permanent disfigurement, permanent loss, loss of use of a member or bodily function, or any other medically determined impairment that can be expected to result in death or be of a long, continued, and indefinite nature. The court found that there was no provision in the plan for partial disability. The rest of the decision is technical.


Seventh Circuit (Illinois, Indiana, Wisconsin)

Zaccardo v. Sullivan, 1992 WESTLAW 122780 (N.D.Ill. 1992) – SSDI appeal by female with Crohn’s disease. The Administrative Law Judge found that she could have performed her last job as clerk/typist beyond the time she claimed to be disabled. There was substantial evidence that the plaintiff’s complaints were not credible since she didn’t seek medical attention, which she would have done if she really was disabled.

Lang v. Shalala, 1995 WESTLAW 358642 (N.D.Ill. 1995) – SSI appeal by male claimant with Crohn’s disease, and burns from a work-related accident, accompanied by some neurological deficits as a result. The opinion contains an exhaustive review of years worth of medical records, and a recitation of the activities the claimant is able to engage in, including taking and passing college courses, driving, cooking, going to restaurants, attending legal and medical appointments, walking, standing for short times, sitting for 15 minutes before he must stretch, carrying groceries, etc. A vocational expert testified that, even with the limits the claimant suffered, he could perform a number of jobs. The main issue was the effects of memory loss, frustration and temper, all resulting from the work accident. The ALJ found that he could perform substantial gainful activity since he retained the residual functional capacity to do certain kinds of jobs. The court affirmed this decision. Although direct application of the SSA grid was inappropriate here, it could be used as a framework. A treating physician’s opinion is entitled to controlling weight only if supported by medically acceptable clinical and laboratory diagnostic evidence.

Neely v. Apfel, 2000 WESTLAW 1285427 (N.D.Ill. 2000) – SSI appeal by female with Crohn’s disease and asthma. Claimant testified that her condition came and went, and that she experienced pain. She cooked, made her bed, did the grocery shopping, but did no other household chores. She had applied for jobs but had not obtained one. The Administrative Law Judge noted that her asthma was not severe and had not required hospitalization, she had undergone surgery for one bowel obstruction, but her condition then improved. There was no medical evidence to support complaints of pain, weakness, shortness of breath, and the ALJ discounted claimant’s testimony accordingly. Claimant’s testimony that she had applied for jobs contradicted her claim that she could not work. The court found that the ALJ’s decision was supported by substantial evidence. The most recent colonoscopy prior to the hearing showed a normal intestine, and the need to use a nebulizer for claimant’s asthma did not preclude all work.

Eighth Circuit (Minnesota, Arkansas, Iowa, Missouri, Nebraska, North Dakota, South Dakota)

Paris v. Schweiker, 674 F.2d 707 (8th Cir. 1982) – SSDI and widow’s benefits appeal by female with IBD (one doctor said Crohn’s, one say ulcerative colitis, at different periods of time). She had a colectomy and ileostomy, followed by an obstruction. She had worked briefly over the years, albeit with difficulty. There was no evidence of a medical determination that the claimant was disabled for a continuous 12 month period. The court said that evidence that impairments are chronic and recurring should be considered in evaluating the combined effects of her impairments.

Mackinaw v. Bowen, 866 F.2d 1023 (8th Cir. 1989) – SSDI and SSI appeal by male with ulcerative colitis, for which he had a colectomy and an ileostomy. Because he was unable to perform all of the elements of sedentary work, including sitting for long times, lifting more than 10 pounds, standing for more than ½ hour, or sitting more than an hour, the impairment had characteristics that differ in a material respect from the guidelines (the grid), so testimony of a vocational expert is required.

Dix v. Sullivan, 900 F.2d 135 (8th Cir. 1990) – SSI appeal by female with Crohn’s disease whose flare-ups lasted from a day to several weeks. She had an ileostomy. She was able to work for a nine year period when her disease was in remission, but when it became more active, she applied for SSI benefits. At that time, the longest she had gone without a flare-up was a month. During flare-ups, she suffered severe abdominal pain, cramps, nausea, diarrhea, and difficulty sleeping. She also had developed 4 fistulas. The Administrative Law Judge found that she was not disabled, finding that his subjective complaints were not credible. When faced with a complaint of pain, the ALJ should consider the claimant’s daily activities; the duration, frequency and intensity of the pain; precipitating and aggravating factors; dosage, effectiveness and side effects of medication; and functional restrictions. “Subjective complaints may be discounted if there are inconsistencies in the evidence as a whole.” The court found that the claimant was unable to work on a regular basis. Sporadic or transitory activity does not disprove disability, the court said. The court granted benefits.

Arkin v. MedCenters Health Care, Inc., 1990 WESTLAW 608203 (D.Minn. 1990) – plaintiff claimed health insurance coverage for his child’s hospital treatment for Crohn’s disease. The employer’s health plan covered treatment in Minnesota, but the plaintiff and his family lived in Ohio, so the insurer would not pay. The State court claims were removed to federal court on the ground that the health insurance plan was governed by ERISA, and ERISA cases must be adjudicated in federal courts. Then the employer claimed that it was not liable because it was not a “fiduciary” under ERISA. The court agreed because the employer did not exercise discretion over the plan. [Again, if you have a case in which this matters, you need a lawyer.]

Soth v. Shalala, 827 F.Supp. 1415 (S.D.Iowa 1993) – SSDI appeal by male claimant with ulcerative colitis, with pain, bleeding, and diarrhea. He also had gout, dementia, and anxiety disorder. The Administrative Law Judge found that his subjective complaints of pain were not fully credible because they were not supported by medical evidence. The ALJ found that he could not work in contact with the public, coworkers or supervisors, and needed access to a bathroom as needed, but that he could perform a number of jobs at medium-level. The court stated the rule that, once a claimant shows he cannot perform his past job, the SSA must show that the claimant has residual functional capacity and that there are jobs available in the economy that the claimant can perform. The court found that there was no medical evidence confirming the finding of residual functional capacity, and remanded the case for further medical examinations of claimant. In March 1996, the case again came to the court at 937 F.Supp. 840 (S.D.Iowa 1996), after the ALJ again decided against the claimant. The court said that since the SSA was unable to prove on remand that the plaintiff was able to perform medium-level work, the ALJ could not deny benefits.

Sales v. Apfel, 188 F.3d 982 (8th Cir. 1999) – SSDI appeal by female claimant with Crohn’s disease. The Administrative Law Judge concluded that she had not performed gainful activity for at least 12 months, and that her Crohn’s disease constituted a severe impairment, but found that her subjective complaints of pain were not credible, and that she retained the residual functional capacity to perform her past work, as well as other light and sedentary work. Medical evidence showed that the claimant had a partial obstruction accompanied by pain, which was recurrent; there was “stenosis” or stricture of the intestine, along with ulcerations. Therefore, claimant meets the requirements of the listing at section 5.07 (see Appendix A). When the listing is met entirely, no further inquiry is necessary.

Harris v. Apfel, 198 F.3d 250 (8th Cir. 1999) (unpublished decision, not binding authority) – SSDI appeal by male claimant with back problems and ulcerative colitis. The Administrative Law Judge discounted the subjective complaints of pain based on inconsistencies in the record, including the fact that medical treatment was sought only intermittently, and that his conditions had been managed with medication over the years. He also reported daily activities like making breakfast, washing dishes, driving, socializing without physical restrictions. The court found that the ALJ had properly applied the legal tests and that substantial evidence supported his conclusion. Because the ALJ discounted the subjective complaints of non-exertional impairments like pain and “colon problem,” it was appropriate to use the grid to determine whether the claimant had sufficient residual functional capacity to perform jobs in the economy.

Taylor v. Apfel, 2001 WESTLAW 13292 (8th Cir. 2001) – SSI appeal by male claimant with ulcerative colitis, multiple sclerosis, and prostate problems. The question was the date when claimant became disabled. Although the record supported the allegation that the claimant suffered symptoms for some time before he sought medical treatment, it was not until that time that he became disabled.

Ninth Circuit (California, Arizona, Oregon, Washington, Idaho, Alaska, Guam, Hawaii, Montana, Nevada)

Wilson v. Schweiker, 553 F.Supp. 728 (E.D.Wash. 1982) – SSDI appeal by male claimant with ulcerative colitis, arthritis, aortic aneurysm, emphysema and heart problems. The Administrative Law Judge found that he could return to his former work as an academic administrator. When he first had symptoms of ulcerative colitis, claimant had 15-20 bowel movements a day and lost about 35 pounds. He was treated with lomotil, prednisone and Azulfadine. He suffered symptoms on and off over the years, treated with steroids. He suffered a number of other impairments, including stress-related fatigue. The Administrative Law Judge found that the claimant’s impairments were not so severe as to prevent him from performing his past employment. The court found that the claimant’s impairments in combination are severe enough to preclude him from engaging in substantial gainful activity. If a number of impairments in combination equal a listed impairment (see Appendix A), the claimant is disabled. The court said that the Secretary is not bound by a medical expert’s opinion, but only if the rejection of that opinion is accompanied by clear and convincing reasons, which were absent in this case.

Goodrich v. Sullivan, 1992 WESTLAW 188812 (D.Ariz. 1992) – SSDI appeal by male claimant with Crohn’s disease, as well as a number of other impairments. The issue was the disability onset date. The Administrative Law Judge found that the claimant’s impairments did not meet or equal the listed impairments (see Appendix A), and he retained residual functional capacity, until some time after he claimed he was unable to work. The ALJ had discredited a medical expert’s testimony on the ground that it was based largely on the subjective complaints of the claimant, which were not credible, according to the ALJ. The court disagreed, instead finding that the medical expert’s opinion was based on clinical evidence. Not only did the court reverse the ALJ, but since the record was complete with all the necessary medical evidence, the court was able to rule on the merits without sending it back to the ALJ, so the court found the earlier onset date was appropriate.

Abrar v. Secretary. 1992 WESTLAW 389004 (C.D.Cal. 1992) – SSI appeal by female with Crohn’s disease, and no other impairments, physical or mental. The Administrative Law Judge found that claimant was not disabled because she did not meet or equal a listed impairment. The ALJ found that she was physically capable of performing sedentary work where there was little or no stress. The ALJ also did not find the subjective complaints of pain to be credible because her testimony was inconsistent, and her medications were more effective than she allowed. The court said that if the ALJ’s decision is based on a credibility assessment, there has to be an explicit finding as to whether the plaintiff’s testimony was believed or not, and the testimony cannot be discounted simply because it is not confirmed by objective evidence. The decision of the treating physician is entitled to special weight, although it can be rejected based on specific legitimate reasons, based on substantial evidence. There was no evidence to show that the claimant could not work at the time of the hearing. The physicians indicated there was no disabling impairment. The fact that the claimant attended school three days a week for at least 4 hours a day is properly considered as evidence that the claimant is not disabled.

Cornblath v. Shalala. 39 F.3d 1186 (9th Cir. 1994) (unpublished decision, not binding) – SSDI appeal by male with Crohn’s disease. The court said opinions of treating physicians are given greater weight, but those opinions are not conclusive. The Administrative Law Judge must carefully explain the reasons for rejecting a treating physician’s opinion. Where the ALJ noted that the opinion was cryptic and the clinical notes were no help, that was sufficient. The ALJ had to consider subjective evidence of pain, but subjective evidence can be rejected if the ALJ gives good reasons, and he failed to do so in this case.

Mongeluzo v. Baxter Travenol Long Term Disability Benefit Plan, 46 F.3d 938 (9th Cir. 1995) – plaintiff with ulcerative colitis and chronic fatigue syndrome, who worked as a hospital information specialist, sued for long term disability benefits under ERISA. Although his claim for disability benefits was granted, it was limited to 24 months based on the insurer’s determination that the disability was caused by a mental illness or a functional nervous disorder. He appealed on the ground that he had ulcerative colitis, which was not a mental disorder, and further argued that chronic fatigue was not a mental disorder, either. The court found that the terms of the plan concerning what constitutes mental illness or functional nervous disorder were ambiguous, so there had to be a trial for the court to decide what the terms mean. The diagnosis of chronic fatigue syndrome was obtained after the case was filed, but the court said that it should be considered.

McNeil v. Apfel, 34 F.Supp.2d 1255 (D.Or. 1998) – SSDI appeal by male claimant with Crohn’s disease, amputated fingers and forgetfulness. Claimant testified that he has up to 14 stools a day. He had tried a number of medications, including prednisone and dipentum. Surgery was recommended, but he declined. The claimant had a criminal history, and while in prison, he swallowed balloons filled with drugs and regurgitated them at will. At least one doctor found that he had gastric emptying disorder caused by this practice. The most recent reports from doctors said that the claimant could perform sedentary work. The Administrative Law Judge discredited all of the claimant’s testimony regarding its symptoms. The court said subjective symptom testimony could only be discredited for clear and convincing reasons. The ALJ’s reasons included the facts that the claimant’s weight was stable, there were prolonged periods of time when he did not seek treatment, and the physicians opined that he could work if he had bathroom access. The court found that this was acceptable.

Moore v. Halter, 168 F.Supp.2d 1137 (N.D.Cal. 2001) – SSI appeal by male claimant with colitis and numerous orthopedic problems. The Administrative Law Judge found that claimant’s impairments did not meet a listing, but that he retained the residual functional capacity to perform light work with additional limitations, including being near a restroom at all times. The claimant had a “Koch pouch” that required him to use a restroom 8 to 10 times per day, each lasting up to 15 minutes. The court found that this should have been explained to the vocational expert who opined that there were jobs in the economy that claimant could perform.

Tenth Circuit (Colorado, Kansas, New Mexico, Oklahoma, Utah, Wyoming)

Veesart v. Sullivan, 1989 WESTLAW 134459 (D.Kan. 1989) – SSDI appeal by female with bladder and bowel frequency, accompanied by incontinence. She testified that she goes to the bathroom at least once per hour, that her social life is minimal, that she can drive to the grocery store, and that she does household chores. The medical evidence showed that, at the time of the hearing, claimant was not on any medication. The Administrative Law Judge found that she did not meet a listed impairment, and that the combination of her impairments was not medically equivalent to a listed impairment. The ALJ also found the claimant’s subjective complaints were not credible in that they conflicted with objective medical information. The court found that it was inappropriate to weigh claimant’s daily activities against a finding of disability since she only performed those tasks that were necessary. However, substantial evidence supported the ALJ’s determination that the claimant’s impairments are episodic rather than constant.

Oulds v. Principal Mutual Life Ins. Co., 813 F.Supp. 768 (W.D.Okla. 1991) – insured with ulcerative colitis brought action against health insurer. The insurer claimed that the insured failed to disclose her diagnosis of ulcerative colitis on the application for insurance. The insured claimed that she told the insurance representative of her diagnosis, but the insurer denied this claim. The insurer attempted to rescind the policy. The court found that a jury could find that the insurer did not act in bad faith in rescinding the policy.

Kiely v. Shores Group, Inc., 1994 WESTLAW 544358 (D.Kan. 1994) – The Defendant , an association of employers, had a health insurance plan for employees of member employers and their dependents. Plaintiff’s children had Crohn’s disease. The court found that the plan was not governed by ERISA, so the plaintiff could assert their State law claims. [Again, if this matters to you, you need a lawyer.]

Houston v. Chater, 56 F.3d 77 (10th Cir. 1995) (unpublished decision, not binding authority) – SSDI appeal by male claimant with Crohn’s disease and back problems. Claimant had lost 60 pounds in 10 months, and xrays confirmed back problems. After a lengthy period on SSDI, claimant’s condition improved, and an Administrative Law Judge found that he no longer was disabled because he had regained residual functional capacity sufficient to perform substantial gainful activity. The record supported these conclusions. The grids cannot be used when a claimant’s exertional capacity is further restricted by non-exertional limitations, as is the case with Crohn’s disease, according to the court.

Kelley v. Chater, 62 F.3d 335 (10th Cir. 1995) – SSDI appeal by male claimant with Crohn’s disease and a hip problem. He had a hip replacement, which greatly improved that condition. Also, his Crohn’s was being controlled by medication. No doctor opined that he was disabled. Accordingly, the court found that substantial evidence supported the finding that he was not disabled.

McNamar v. Apfel, 172 F.3d 764 (10th Cir. 1999) – SSDI appeal by female with Crohn’s disease challenging the offset of SSDI benefits by the amount of claimant’s Civil Service disability benefits. As a matter of law, benefits from another federal government plan would be offset against SSDI benefits.

Smith v. Apfel, 2000 WESTLAW 360126 (D.Kan. 2000) – SSDI appeal by male with Crohn’s disease, hernia, high blood pressure, fibromyalgia, and other impairments. His primary complaint was Crohn’s disease, and particularly symptoms he began experiencing after a small bowel resection. Claimant testified he has 6 to 8 bowel movements a day, is incontinent, vomits after meals, and has cramping stomach pain, fluctuating weight, and fatigue. The Administrative Law Judge found no disability because claimant’s impairments, alone or in combination, were not severe. The court found that the ALJ erred. The ALJ improperly rejected subjective complaints of pain and discounted a treating physician’s opinion because there was substantial evidence in the record, including medical evidence, supporting claimant’s position.

Barrow v. Massanari, 2001 WESTLAW 741718 (D.Kan. 2001) – SSDI appeal by female claimant with colitis, migraine headaches, mild mitro valve prolapse, and possible connective tissue disease. All clinical tests were normal except for a biopsy taken during a colonoscopy, which showed colitis. A later biopsy was normal. She also had a mildly elevated sed rate. She developed daily migraines that were alleviated with medication, and eventually was diagnosed with fibromyalgia, and complained of fatigue. Subjective complaints of pain are evaluated according the following test: (1) whether claimant proves with objective evidence an impairment that causes the subjective condition; (2) whether a loose nexus exists between the impairment and the subjective condition; and (3) whether the subjective condition is disabling based on all of the evidence. In assessing credibility, an Administrative Law Judge should consider the level of medication, the extensiveness of the attempts to obtain relief, the frequency of medical contacts, the nature of daily activities, the consistency of nonmedical testimony with objective medical evidence, and subjective measures of credibility within the judgment of the ALJ. An ALJ has to explain why specific evidence supports a conclusion that a claimant’s subjective complaints are not credible. An ALJ must give substantial weight to the opinion of a treating physician unless good cause is shown to disregard it, considering factors such as the length of the treatment relationship, the frequency of examination, the nature and extent of the treatment relationship, the degree to which the physician’s opinion is supported by relevant evidence, the consistency between the opinion and the record as a whole, whether or not the physician is a specialist in the ears, and other factors brought to the ALJ’s attention which tend to support or contradict the opinion.

Robbins v. Barnhart, 205 F.Supp.2d 1189 (D.Kan. 2002) – SSDI appeal by female claimant with Crohn’s disease. SSA terminated benefits, and claimant contested, arguing that there was no improvement in her condition. The question presented was as follows: Who has the burden of proof in an improvement case? The court placed the burden on the SSA. Medical improvement must be determined based on medical evidence showing changes in signs, symptoms, or laboratory findings. The Administrative Law Judge had found improvement based on less frequent hospital visits and the claimant’s lack of credibility. The court said lack of hospitalization does not mean claimant was better since she had been taught how to resolve temporary bowel obstructions herself with clear liquids and rest. The court also found that a treating physician’s opinion as to the nature and severity of a claimant’s impairments is to be given controlling weight when it is well-supported by medically acceptable clinical and laboratory diagnostic techniques and is not inconsistent with the substantial evidence in the record. The ALJ must give specific, legitimate reasons for rejecting the treating physician’s opinion. The evidence showed that, due to the fact that claimant would miss work for several days per month, she remained unable to work.

Eleventh Circuit (Florida, Alabama, Georgia)

Duckett v. Blue Cross and Blue Shield of Alabama, 75 F.Supp.2d 1310 (M.D.Ala. 1999) – health insurance claim by employee whose son had ulcerative colitis, later diagnosed as Crohn’s disease. The insurer denied claims that arose during a waiting period for pre-existing conditions when the insured changed plans. The insured filed suit in State court. The insurer said that the plan was governed by ERISA, and, thus, could only be brought in federal court. The court dismissed the State law claims and gave the insured a chance to amend her complaint to state a claim under ERISA.

Denson v. Apfel, 2000 WESTLAW 1848077 (S.D.Ala. 2000) – SSDI and SSI appeal by female claimant with Crohn’s disease and other impairments. The Administrative Law Judge found that she suffered from a severe impairment, but not one that is listed or is medically equivalent to one listed in Appendix A. The ALJ also found that claimant’s subjective complaints of pain were inconsistent and disproportionate to the medical evidence. Thus, the ALJ found that she had residual functional capacity to perform medium work with some restrictions. Subjective complaints of pain are evaluated to determine whether there is evidence of an underlying medical condition and either (1) objective medical evidence confirming severity of the pain; or (2) that the objectively determined medical condition is of such a severity that it can be reasonably expected to give rise to the alleged pain. In assessing credibility, the ALJ should consider the claimant’s daily activities; the location, duration, frequency and intensity of the pain; factors that precipitate and aggravate the symptoms; the type, dosage, effectiveness and side effects of medication; treatment other than medication; any measures other than treatment the individual uses or has used to relieve pain. A treating physician’s opinion is entitled to considerable weight unless there is good cause to the contrary, i.e., unless it is not accompanied by objective medical evidence or it is wholly conclusory, or when the evidence supports a contrary conclusion. The need to use a bathroom frequently would constitute a significant non-exertional limitation which should be considered by a vocational expert when determining if work exists in the national economy.

Martinez v. Apfel, 2000 WESTLAW 718815 (S.D.Ala. 2000) – SSDI and SSI appeal by female claimant with ulcerative colitis, substance addiction, and other impairments. Most of the medical reports supported a finding of some residual functional capacity. The court found that substantial evidence in the record supports the Administrative Law Judge’s conclusion that the claimant was capable of performing sedentary, light work.

D.C. Circuit (District of Columbia)

Morris v. Sullivan, 897 F.3d 553 (D.C.Cir. 1990) – petition to reopen claim for childhood disability benefits filed more than 12 months after the decision on the original claim. The claimant had Crohn’s disease. The Administrative Law Judge found that there was not “good cause” to reopen the prior claim. The court lacks jurisdiction to hear appeal of denial of petition to reopen. It can only hear appeals of denials after a hearing.
 

Conclusion



Although I am sure that I have not answered every question IBD patients might have about health and disability insurance and SSDI, I hope I have given patients enough information to understand the system when they cannot obtain the assistance of an attorney. Remember – it is up to us to be our own advocates, even when we have attorneys. Indeed, you may have to advocate with your attorney! Use what is here as a guide to help you ensure that you get the best possible results for yourself. Good luck!

Jennifer C. Jaff, Esq.
Killian, Donohue & Jaff, LLC
363 Main Street
Hartford, CT 06106
Jennifer@kdjlaw.com

 

Appendix A: SSDI Criteria



5.00 Digestive System

A. Disorders of the Digestive System which result in a marked impairment usually do so because of interference with nutrition, multiple recurrent inflammatory lesions, or complications of disease, such as fistulae, abscesses, or recurrent obstruction. Such complications usually respond to treatment. These complications must be shown to persist on repeated examinations despite therapy for a reasonable presumption to be made that a marked impairment will last for a continuous period of at least 12 months.

B. Malnutrition or Weight Loss from gastrointestinal disorders. When the primary disorder of the digestive tract has been established (e.g., enterocolitis, chronic pancreatitis, postgastrointestinal resection, or esophageal stricture, stenosis, or obstruction), the resultant interference with nutrition will be considered under the criteria in 5.08. This will apply whether the weight loss is due to primary or secondary disorders of malabsorption, malassimilation or obstruction.

C. Surgical Diversion of the Intestinal Tract, including colostomy or ileostomy, are not listed since they do not represent impairments which preclude all work activity if the individual is able to maintain adequate nutrition and function of the stoma. Dumping syndrome which may follow gastric resection rarely represents a marked impairment which would continue for 12 months. Peptic ulcer disease with recurrent ulceration after definitive surgery ordinarily responds to treatment. A recurrent ulcer after definitive surgery must be demonstrated on repeated upper gastrointestinal roentgenograms or gastroscopic examinations despite therapy. To be considered a severe impairment which will last for at least 12 months, a recurrent ulcer after definitive surgery must be demonstrated, despite therapy, by repeated appropriate medically acceptable imaging of the upper gastrointestinal tract or by gastroscopic examinations. Medically acceptable imaging includes, but is not limited to, x-ray imaging, computerized axial tomography (CAT scan) or magnetic resonance imaging (MRI), with or without contrast material, myelography, and radionuclear bone scans. "Appropriate" means that the technique used is the proper one to support the evaluation and diagnosis of the impairment.

Definitive surgical procedures are those designed to control the ulcer disease process (i.e, vagotomy and pyloroplasty, subtotal gastrectomy, etc.). Simple closure of a perforated ulcer does not constitute definitive surgical therapy for peptic ulcer disease.

5.01 Category of Impairments, Digestive System

5.02 Recurrent upper gastrointestinal hemorrhage from undetermined cause with anemia manifested by hematocrit of 30 percent or less on repeated examinations.

5.03 Stricture, stenosis, or obstruction of the esophagus (demonstrated by endoscopy or other appropriate medically acceptable imaging) with weight loss as described under listing 5.08.

5.04 Peptic ulcer disease (demonstrated by endoscopy or other appropriate medially acceptable imaging). With:

A. Recurrent ulceration after definitive surgery persistent despite therapy; or

B. Inoperable fistula formation; or

C. Recurrent obstruction demonstrated by endoscopy or other appropriate medically acceptable imaging; or,

D. Weight loss as described under 5.08.

5.05 Chronic liver disease (e.g., portal, postnecrotic, or biliary cirrhosis; chronic active hepatitis; Wilson's disease). With:

A. Esophageal Varices (demonstrated by endoscopy or other appropriate medically acceptable imaging) with a documented history of massive hemorrhage attributable to these varices. Consider under disability for 3 years following the last massive hemorrhage; thereafter, evaluate the residual impairment; or

B. Performance of a shunt operation for esophageal varices. Consider under a disability for 3 years following surgery; thereafter, evaluate the residual impairment; or

C. Serum bilirubin of 2.5 mg. per deciliter (100 ml.) or greater persisting on repeated examinations for at least 5 months; or

D. Ascites, not attributable to other causes, recurrent or persisting for at least 5 months, demonstrated by abdominal paracentesis or associated with persistent hypoalbuminemia of 3.0 gm. per deciliter (100 ml.) or less; or

E. Hepatic encephalopathy. Evaluate under the criteria in Listing 12.02; or

F. Confirmation of chronic liver disease by liver biopsy (obtained independent of Social Security disability evaluation) and one of the following:

1. Ascites not attributable to other causes, recurrent or persisting for at least 3 months, demonstrated by abdominal paracentesis or associated with persistent hypoalbuminemia of 3.0 gm. per deciliter (100 ml.) or less; or

2. Serum bilirubin of 2.5 mg. per deciliter (100 ml.) or greater on repeated examinations for at least 3 months; or

3. Hepatic cell necrosis or inflammation, persisting for at least 3 months, documented by repeated abnormalities of prothrombin time and enzymes indicative of hepatic dysfunction.

5.06 Chronic ulcerative or granulomatous colitis (demonstrated by endoscopy barium enema, biopsy, or operative findings). With:

A. Recurrent Bloody Stools documented on repeated examinations and anemia manifested by hematocrit of 30 percent or less on repeated examinations; or

B. Persistent or recurrent systemic manifestations. such as arthritis, iritis, fever, or liver dysfunction, not attributable to other causes; or

C. Intermittent obstruction due to intractable abscess, fistula formation, or stenosis; or

D. Recurrence of findings of A, B, or C, above after total colectomy: or

E. Weight loss as described under 5.08.

5.07 Regional enteritis (Demonstrated by operative findings, barium studies, biopsy, or endoscopy). With:

A. Persistent or recurrent intestinal obstruction evidenced by abdominal pain, distention, nausea, and vomiting and accompanied by stenotic areas of small bowel with proximal intestinal dilation; or

B. Persistent or recurrent systemic manifestations such as arthritis, iritis, fever, or liver dysfunction, not attributable to other causes; or

C. Intermittent obstruction due to intractable abscess or fistula formation; or

D. Weight loss as described under 5.08.

5.08 Weight loss due to any persisting gastrointestinal disorder: (The following weights are to be demonstrated to have persisted for at least 3 months despite prescribed therapy and expected to persist at this level for at least 12 months.) With:

A. Weight equal to or less than the values specified in Table I or II; or

B. Weight equal to or less than the values specified in Table III or IV and one of the following abnormal findings on repeated examinations:

1. Serum albumin of 3.0 gm. per deciliter (100 ml.) or less; or

2. Hematocrit of 30 percent or less; or

3. Serum calcium of 8.0 mg. per deciliter (100 ml.) (4.0 mEq./L) or less; or

4. Uncontrolled diabetes mellitus due to pancreatic dysfunction with repeated hyperglycemia, hypoglycemia, or ketosis; or

5. Fat in stool of 7 gm. or greater per 24-hour stool specimen; or

6. Nitrogen in stool of 3 gm. or greater per 24-hour specimen; or

7. Persistent or recurrent ascites or edema not attributable to other causes.

Tables of Weight Reflecting Malnutrition Scaled According to Height and Sex--to be used only in connection with 5.08.





5.09 Liver transplant. Consider under a disability for 12 months following the date of surgery; thereafter, evaluate the residual impairment(s).

Appendix B: CCFA Doctors’ Letters



January 3, 2002

Commissioner of Social Security
P. O. Box 17703
Baltimore, MD 21235-7703

Dear Commissioner,

I am replying to the proposed 'Revised Medical Criteria for Evaluating Impairments of the Digestive System' (20 CFR Part 404, Regulations No. 4, RIN 0960-AF28). My comments are directed at the rules applying to disability secondary to Inflammatory Bowel Disease. I am a Professor of Medicine in the Division of Gastroenterology and Hepatology at the University of Alabama at Birmingham. I have a long-standing clinical and research interest in Inflammatory Bowel Disease (IBD) and currently serve as Chairman of the National Scientific Advisory Committee of the Crohn's and Colitis Foundation of America (CCFA). I believe that my remarks reflect the opinion of many if not most of my peers, and of the membership of the CCFA.

Most individuals with IBD respond to current medical and/or surgical therapy and lead fairly normal lives. However, there is a small subset of patients who have recurring and persistent disease that is refractory to current therapy, which renders them unable to maintain any substantial gainful activity. Neither the existing nor the proposed revisions to the SSA regulations are fair to these patients with IBD. My experience over some 25 years of practice is that even patients devastated by IBD are routinely and repeatedly denied disability by the SSA. In virtually every case in which SSA disability status has been granted, the patient and his or her family has had to hire an attorney to plead their case, adding to the burdens and costs of their disease. This is wrong and needs to be corrected.

The height and weight tables in the regulations do not reflect the chronicity and severity of disease in IBD patients who are routinely treated with corticosteroids. These drugs cause fluid retention and increase fatty tissue accumulation. It is not uncommon for patients with crippling symptoms, hypoalbuminemia, anemia, nutritional deficiencies, etc., to have 'normal' or increased weight due to the corticosteroids.

There are a number of forms of intractable IBD, but only recurrent intestinal obstruction or fistulae are recognized as grounds for disability under the proposed revised regulations. This is too narrow a definition. These diseases can cause other recurring, persistent, and treatment-refractory symptoms that preclude substantial gainful activity.

I urge strongly that the regulations regarding disability in IBD be broadened to include other forms of chronic IBD with recurring, persistent, and severe symptoms that are refractory to medical and/or surgical therapy. These would include chronic severe diarrhea, with or without incontinence, abdominal pain, recurrent obstruction, anemia, fatigue, fistulae, abscess, or other perineal or intra abdominal complications.

I realize that some of these crippling symptoms do not lend themselves to objective verification via imaging studies or laboratory tests. Thus, these broadened criteria will be more difficult to administer. However, this is the nature of the illness and it is entirely unfair and wrong to limit disability to only those individuals whose suffering can be easily validated by X-ray. Perhaps the medical community could assist the SSA via expert consultant panels. I would be happy to discuss these issues further with you or with other officials of the SSA.

Sincerely yours,
Charles O. Elson, M.D.

Basil I. Hirschowitz Chair in Gastroenterology
Professor of Medicine
University of Alabama at Birmingham
Chairman, National Scientific Advisory Committee
Crohn's and Colitis Foundation of America

January 14, 2002

Commissioner of Social Security
P.O. Box 17703
Baltimore, MD 21235-7703

Dear Commissioner,

I am writing to comment on the proposed "Revised Medical Criteria for Evaluating Impairments of the Digestive System"(20 CFR PART 404, Regulations No. 4, RIN 0960-AF28) and express my concern about the rules applied to disability secondary to inflammatory bowel disease. As a Professor of Medicine at the Harvard Medical School and Chief of the Division of Gastroenterology at Massachusetts General Hospital, I have had long standing special interest in inflammatory bowel disease, and currently serve as both Professional Affairs Liaison of the Crohn's and Colitis Foundation of America (CCFA) and Vice-president of the American Gastroenterological Association (AGA).

While most patients with major forms of inflammatory bowel disease (ulcerative colitis and Crohn's disease) respond well to available therapeutic approaches and are able to maintain an active life, regrettably there are still many of patients for whom these available treatments remain inadequate and who are consequently unable to maintain any semblance of work activity. Based on my extensive experience in caring for these patients over more than 20 years, I believe that the proposed revisions, as well as the pre-existing SSA regulations, are unfair to these patients in failing to recognize the full variety of ways in which they are afflicted that render them unable to undertake meaningful work. As I reviewed these regulations, I now have a better understanding why many of my patients over the years have been repeatedly denied what otherwise would seem easily justified support through SSA. Indeed, virtually each of my patients over these many years who has ultimately successfully gained SSA disability status has done so through engaging an attorney. Other patients, who are simply too weak and discouraged by their underlying illness and/or without the resources to engage proper representation, have simply given up, adding the stress of their financial isolation to the burden of their disease. I believe this is clearly wrong and unfair, and I hope that you will move to make suitable corrections so that this will not continue into the future.

I believe there are two major shortcomings with the regulations as they would be formulated after revision. First, focusing on recurrent intestinal obstruction or fistulae as the almost sole criteria for disability in inflammatory bowel disease overlooks many of the recurrent severe symptoms that can be refractory to medical and surgical therapy. In my experience these certainly include (much more commonly than symptoms of obstruction) recurring and persisting severe diarrhea, which makes it impossible to sustain any activity for even modest periods of time. In addition, many of these patients, especially those with Crohn's disease, can be incapacitated by persistent abdominal pain, which may be unassociated with either obstruction or fistulae. Profound fatigue on the basis of the underlying inflammatory disease or the resulting and often complex nutritional deficiencies that accompany these disorders in many patients may also be incapacitating. Secondly, I note that the other criteria upon which IBD patients might qualify for SSA disability under the proposed revision, i.e. weight loss, may ironically be confounded by effects of medicines, e.g. corticosteroids, which lead to substantial salt and water retention so that nutritionally depleted patients may have artificially sustained weight.

Finally, I note that many of these most challenging symptoms cannot be directly quantified by usual objective studies, including imaging or laboratory tests. Nonetheless, as someone who has regularly been interacting with patients whose lives have been devastated by these symptoms I am persuaded that SSA essentially excludes "out of hand" relief to many who need and deserve it. I have no doubt that many members of the medical community would gladly lend assistance to the SSA in establishing approaches to providing reasonable mechanisms for evaluating the merits of requests for disability by IBD patients. Certainly, the CCFA and the AGA, as organizations that have engaged physicians committed to helping their patients cope with these distressing medical conditions would welcome the chance to work with you in the best interest of the patients.

Sincerely,
Daniel K. Podolsky, M.D.

August 27, 2002

Karen Ezrine, M.D.
Medical Officer – Internal Medicine
Social Security Administration
Office of Disability – Div. of Medical and Vocational Policy
Operations Building 3A8

6401 Security Blvd.
Baltimore, MD 21235

Dear Dr. Ezrine,

I am writing on behalf of both the Crohn’s and Colitis Foundation of America (CCFA) and American Gastroenterological Association (AGA) in follow up to our discussion regarding the challenges that current guidelines for determination of disability present for patients suffering from inflammatory bowel diseases as viewed by physicians involved in their care. As discussed, we believe that the present criteria do not fully reflect the spectrum of clinical manifestations of Inflammatory Bowel Diseases. We also recognize the challenge the SSA/SSI faces in developing criteria that can be effectively implemented to assure accurate determination of disability as defined by the agency. We are very grateful for your interest in considering language that might be incorporated in revised guidelines to address the problems highlighted in our earlier letters. Accordingly we are writing to provide draft language for your consideration.

In view of the symptomatic manifestations of ulcerative colitis or Crohn’s disease (Crohn’s colitis*, enteritis, or enterocolitis) that may effectively render patients disabled (per SSA/SSI definitions) in the absence of currently stipulated criteria, we suggest the following additions to the guidelines provided in “Disability Evaluation Under Social Security”:

5.06 Chronic Ulcerative or Granulomatous Colitis*

E. Weight loss as described under 5.08 or evidence of significant and sustained significant nutritional deficiency or chronic blood loss in the absence of weight loss as manifest by albumin <2.5g/dl, hematocrit <30 despite treatment, hypokalemia, hypocalcemia and hypomagnesaemia, ascites or edema despite treatment with diuretics.

F. Diarrhea and/or urgency of frequency and/or fecal incontinence despite use of anti-diarrheal medications that prevent sustained work activity or adequate sleep.

G. Chronic pain, incompletely controlled or requiring use of narcotic medications that preclude sustained work.

5.07 Regional enteritis

D. Weight loss or nutritional deficiency as described under 5.06

E. Diarrhea as described under 5.06

F. Chronic as described under 5.06

105.07 Chronic inflammatory bowel disease (in children)

B. Malnutrition as described under 105.08 in the absence of weight loss per 5.06 in context of chronic treatment with corticosteroids.

D. Diarrhea as described under 5.06

I hope you will find these useful and welcome the opportunity for any further discussion that may be helpful to you and your colleagues. Thanks once again for your consideration.

Sincerely yours,

Daniel K. Podolsky, M.D.
President Elect, American Gastroenterological Association
Member-at-Large, National Scientific Advisory Committee,
Crohn’s & Colitis Foundation of America

Charles O. Elson, M.D.
Chairperson, National Scientific Advisory Committee,
Crohn’s & Colitis Foundation of America



_____________________
* Granulomatous colitis should be replaed with “Crohn’s colitis” insofar as 20-50% of patients with this disease will not have evidence of granulomas on routine biopsies and granulomata are not a requisite diagnostic feature.

DKP/cv

Appendix C: Sample SSDI Application Responses



Thanks to Sari Jo Mogol Legge for allowing me to reprint her materials here. Sari was granted SSDI at the application stage, without the need to appeal, and without the assistance of an attorney. I reprint her materials here not so you can copy them, but so you can see the level of graphic detail that is required. Nothing is too personal or too private.

Sari also has some very practical tips for patients applying for SSDI. She asked me to include them here:

1. If possible, choose the face-to-face option when applying for SSDI. Call your local SSA office and make an appointment. They will ask if you want a face-to-face or telephone interview. Sari says to choose the face-to-face option.

2. Don’t dress up or wear a lot of make-up. While you don’t want to exaggerate your symptoms, you also don’t want to minimize them.

3. Get the interviewer to see you as a human being. They may be in a hurry; don’t let them rush you. If you need to use the bathroom, do so.

4. Be as honest and detailed as you possibly can. Don’t forget to talk about the emotional toll the disease takes on you. If it has affected your sex life, make sure to say that.

You can get other tips from patients by logging onto www.ibdsucks.org and going to the “Disability” folder under the heading “Working & Insurance.”

* * * * *



THIS REPORT WAS USED IN THE PREPARATION OF THE FIRST SSA INTERVIEW DONE IN PERSON

My Crohn’s disease started near puberty from 1972 onwards. I did not have a diagnosis until age 22. This was sporadic through early teen years and more frequent as I aged. My parents did not take me to the doctor for my condition. In 1983, I was referred at age 22 to a Gastroenterologist in Brainerd, Doctor Ronald M. Sorenson MD of Brainerd Medical Center. Doctor Sorenson ordered several tests including blood labs, Endoscopy, Flex Sigmoidoscopy, and Small Bowel Follow Through with barium, Barium enema and Colonoscopy. The definitive diagnosis was Crohn’s Disease.

My medications included Sulfasalazine, Azulfadine, Prednisone and occasional pain medications. Prednisone was the only effective thing to combat a flare at first, but I had bad side effects from long term usage. Through out a period from 1983 – 1987, you will see comprehensive hospitalization and clinic records. There are also episodes of Pancreatitis, depression and other auto immune illness conditions associated with Crohn’s. My menstruation cycle would coincide with a Crohn’s flaring episode with each ovulation.

1987. I was newly 27 years old. I weighed 87 pounds on average. I was hospitalized two weeks out of each month from January to July. July 5, 1987 I was in St. Joseph’s Medical Center in Brainerd. Dr. Sorenson informed me that my colon was destroyed. I was sent to Abbott Northwestern Medical Center on July 15, 1987 and was operated on July 17, 1987 by Doctor Fredric Nemer, MD a colon rectal specialty surgeon. I was given a total permanent Ileostomy. My appendix, entire large intestine, rectum, anus and 13 inches of Small bowel Terminal Ileum were removed. I was given a stoma for the Ileostomy on my right side.

I remained in good remission and health from 1987 to 1991. Sometime in the late 80’s or early 90’s I had a hospitalization for Pancreatitis – see records. In 1991 I was turned down for a BCIR continent ostomy operation due to the diagnosed return of Crohn’s disease with an SBFT test at St. Joseph’s. In 1993, I gave birth to my son with a trouble free pregnancy but distressed labor of 17 hours. Due to my ostomy, the local OB/GYN preformed a vaginal sectioning which was about 100 stitches inside and out to bring the baby through the birth canal instead of cutting my abdomen area.

In the fall of 1993, I had breast reduction surgery. My Crohn’s condition affected scar tissue build up issues. See records from Dr. Smith of Midsota Plastic Surgeons. I had to go back and have some revision work done on one breast due to adhesions and Keloid scar factors.

I had/have an issue with dehydration due to the ostomy. There have been several hospitalizations or ER visits pertaining to becoming dehydrated from 1990 onwards. My records will indicate an ambulance call to my home in Nisswa sometime in 1993 or 1994 from complete and dangerous dehydration. In hot weather, even with all precautions, there are dangerous issues with hydration maintenance. This is a severe and on going issue in the present day and part of my reason for seeking SSDI qualifications.

1995 I started to have constant fatigue issues. My ostomy waste output became acidic and appliances would not adhere as they had before. My health quality was declining. Various attempts with doctors and medical supply to solve the increasing amount of problems were unsuccessful. This interfered with my job as a cashier at Walmart in Baxter. I was frequently late or sick towards the end of my work for them and they were not good at allowing me bathroom breaks as they had no understanding of my ostomy needs. At the time, I had continuous, acidic and painful water output into the appliance bag. I eventually quit working for Walmart and sought other employment. I went back to part time radio jobs and finally found secure employment at Cragun’s Resort. I had no idea that the Crohn’s was active again due to the lack of pain. All other symptoms were present and constant up to 1997. My constant appliance failure due to acidic waste was alarming and interrupted all aspects of work and home life. I blamed my fatigue and problems on pushing myself as a single mother with a full time job. This did not account for the bloating and weight gain when everything I ate was either vomited out or turned to water acid through my dying ileostomy stoma. Had I had the typical abdominal pain of years past, I would have sought answers for IBD sooner. I was naïve in thinking it was not Crohn’s and was not educated enough at that point to understand that the illness can return after surgical intervention. It was determined that my stoma was no longer functional.

On April 4, 1997 I had Pancreatitis and was hospitalized.

In June of 1997 I had surgery for stoma revision at St. Joseph’s with general surgeon Doctor Donald Wennberg, MD. It was to be a day surgery. I got abscessed at the surgical wound site and the stoma created by Dr. Wennberg failed. I was in St. Joseph’s for 4-5 days. With infections not responding to medications, and my Ileostomy infected so badly, I was transferred down to Abbott Northwestern Hospital in Minneapolis and Doctor Fredric Nemer did an emergency operation which included opening me up fully and removing another large section of diseased Terminal Ileum small bowel resecting back to healthy intestine to form a new ostomy site on the left abdomen side of my body. I now have only 17 feet of working small intestine.

I continue to have annual wellness Ileoscopic exams with Doctor Ronald Sorenson to check for Crohn’s activity. It was again discovered in summer of 2002.

1995-1998 I was treated for various gynecological and menstruation difficulties.

December 30, 1998 I had a partial Hysterectomy for Uterus removal done by Doctor Stephen Larson, GYN/MD at Fairview Southdale Hospital in Minneapolis. Doctor Nemer assisted in the surgery due to ostomy issue concerns. I had been diagnosed by Doctor Leland with bleeding into the uterine muscle wall. I had massive adhesions which stuck the uterus to various organs surrounding it and I had fibroids inside of it.

1998-present: I continue to have pain from inner adhesions and vomiting. I have constant fatigue and hydration/nutrition issues since the 1997 operation. I am frequently ill which upsets work situations greatly. My ability to maintain a full time job that would bring a living wage to contribute to the well being of my family is something I can no longer do with any guarantee of consistent health. When I work outside the home I seem to catch colds and viruses that others around me have due to the Auto Immune issues associated with Crohn’s Disease. My ability to concentrate on several tasks at once has diminished due to interruptions for bathroom visits (3 an hour at times) and always seeking to replenish fluid intake. I can not eat properly in a work setting due to ostomy issues such as frequent bathroom visits after food intake and nausea. If I do not eat, I become dizzy or begin to dehydrate. Office clothing constraining my abdomen is difficult to tolerate during an eight hour work day. If an office is not properly ventilated during extreme heat conditions outdoors, I become very dizzy and have passed out in the work place. If I do not tell an employer that I have needs due to the Ileostomy, I quickly let them down with health problems that develop. If I am forthcoming with health information, I do not get hired. This has been a huge problem since the second surgery with the further loss of small bowel. I have insomnia, which contributes to fatigue if I have to keep to a strict schedule. All I do is sleep on the weekends. I can not care for the family or home when I work outside of it. Part of the reason we closed Europa in 2001, our repair garage is because I was too sick too often to help Peter run the office portion. I stated this during our Chapter 7 hearing so it is on record.

I had sporadic vomiting issues for unknown reasons. This problem increased greatly in February 2002 and by early June with more testing from Doctor Sorenson, including an SBFT, Endoscopy and Ileoscopic exam concluded that I have a hernia in the small intestine close to the stoma, and the return of Crohn’s Disease present from the stoma back into the small intestine by 40cm (nearly two feet). I am currently on Pentasa at 250mg pills, 9 a day.

 

* * * * *

 

THIS WAS AN EXTRA ATTACHMENT TO QUESTION E WITHIN PACKET TO MAIL FOR ROUND TWO OF QUESTIONS THAT FOLLOWED FACE TO FACE APPLICATION INTERVIEW



August 21, 2002

Form ADL (Rev. 12/94) ES-80333-02 SSA Questionnaire.

DETAILED ATTACHMENT FROM SARI LEGGE

Question E. “What do you do on a typical day (include household chores, recreational activities, spending time with friends, etc.)? Be specific. Give an hour by hour description of a typical day, if possible.

My typical day is comprised of home based things these days. Usually, I will have gotten to sleep between 3 or 4 am depending on being finished with digestion from the ostomy and being done running to the bathroom to empty the pouch. There are nights when vomiting is a contributing factor to finally being able to lie down and stay in bed. I require some background noise such as a fan or our clock radio features ‘nature’ sounds in order to fall asleep. Most nights I will take 50-75 mgs of Benadryl to assist my insomnia. If left to sleep, I usually wake at around 6 or 7 to use the bathroom, smoke a cigarette and then go back to the bedroom. I will sleep for an additional 5 hours if I am allowed to depending on the needs of our son, or past work needs or appointment/commitments. Sleep is always something I look forward to but do not do very well. The ostomy seems to have hardwired itself into my subconscious as I wake up with a need to empty it if it has become full. Very seldom do I have an accident in bed from a leaking or blown appliance.

Sexual relations with my husband are catch as catch can in good moments. I do not have pain which prevents sexual intimacy, but if you tried to make love and feel sexual with water pouring out of your body into a little bag …it is rather hard to be spontaneous. Getting up during sexual intimacy to use the bathroom is also a challenge. My husband is ready for Sainthood for several different reasons. I tell my new ostomates that their sex lives are better after surgery, for the most part that is true, but, for my own circumstance of late with active disease in a short gut, I will say that sex comes with new challenges.

I have to wonder what’s in it for my husband, but he seems to love me regardless so, that endears him to my heart every day I wake up to find that we have an excellent marriage and are very much in love with each other.

Since the vomiting incidents have increased in March 2002, I have unfortunately been having some urination leak/urgency issues. Both Dr. Li and Dr. Sorenson feel that this is a result of straining and pressure on the body to vomit. So, there are times when I need to wake up to urinate too. Most of the time, I pee when I am in the bathroom to empty the pouch. In the day, the pressure to urinate is greater than the need to empty the bag of waste from the ostomy.

Once I am awake for the duration of the day, I have a cigarette, use the bathroom, come back to the bedroom, make the bed and then brush my hair and teeth in the upstairs bathroom. I also take my first Pentasa and some vitamins from upstairs. If my son is at home, I check in with him to see to his needs. If he is not home, I check the answering machine and return telephone calls. I will then come to the computer, turn it on and check email. I drink water and then will attend to the bathroom shortly thereafter. I do not handle food well several hours after waking up. If I eat at rising, I usually do end up vomiting.

I go retrieve email from the computer and start to correspond to people from www.ibdsucks.com, or MN (Crohn’s and Colitis Foundation of America) or National CCFA messages and duties. I also belong to an IBD Quilt Project organization in which I handle the PR and Marketing as a volunteer person. This is due to my media background and I can be effective for the CCFA, IBDSucks or the Quilt from my home. I make calls as required or not by the emails I receive. I check the IBD Sucks website for “Dear Baggy” my ostomy discussion folder to help other ostomates and IBD patients. This may take the remainder of the day at times until I begin to prepare dinner for my family. I do not get paid for these services as they are all volunteer based or non profit organizations. If I had to leave the house to ‘work’ for any of these things, I’d let them down greatly.

In the evenings, I try not to get back on the computer after dinner to be on www.ibdsucks.com. This is a patient to patient Crohn’s and Colitis website for support that I am known as Dear Baggy on. I am on this website nearly daily as a veteran ostomate voluntarily using my time to help others in the same situation. I used to sign back on the computer onto Sucks nightly, but find that I can not get off the computer with patient needs sometimes taking a few hours to discuss and resolve where ever possible. I have given this duty to others who are on in the evening. We are a global website and usually there is patient help available from another patient. I used to be worried no one else could handle the duties of ostomy help, but over the years, we have quiet a few good veteran patients whom I trust to mind things in the evening.

In the midst of all this, I do varied tasks such as eat something, take meds, clean the house a bit – like dusting or vacuuming if it is needed. I do laundry loads once a week and tend to that. I may, pending on weather go out and water the garden and pull a couple weeds or bring flowers in if there are any suitable. I do garden as my main hobby when the energy is there for me to enjoy. I have a perennial garden which requires little maintenance once established. With all that going on, there are required bathroom breaks, at least 2 an hour to empty the ostomy appliance pouch. I parent my son during all this too. He’s a good kid, I am very lucky in that regard but worry about my ability to keep a strong and connected parental eye on him as he approaches his teen years. He is 10 in January of 2003. Auto pilot mode will not suffice in keeping a teen safe and directed from hazards they face. My husband can not be expected to take up all the slack, can he? No, he can not.

What I notice most is that I used to be able to talk on the telephone and correspond with email or do bookwork (family bills) at the same time. I can no longer concentrate on two things at once. I get a little frustrated when I get a phone call that is social in nature when I have things that I must concentrate on to finish or answer back in a timely manner. The telephone seems to put back my timing in accomplishing things. I can do dishes or empty the dishwasher, fold laundry or house clean while on the phone, but I keep my house pretty orderly and my husband and son also help with the housework – so usually, any business minded thinking or more formal writing in answering letters or tasks can not be done while I am on the phone. Pending on who it is on the phone, I have been known to take the cordless into the bathroom with me. Certain callers, I must by necessity tell them that I will call them right back to excuse myself to the bathroom.

I drink water or tea during the day. Mostly I like water best because it stays down and hydrates me best. Medication schedules are adhered to for the daily instructions even if they are not at the same time each day. I still get them in me properly. I think.

When I prepare a family meal to coordinate with my husband’s return from work, we 3 like to sit down together. This is a very important time to us as a family. I pop up at least once a meal to the bathroom. My son, who is healthy, seems to have picked up this habit for some strange reason too. It’s a family joke. After any meal, I do not like dishes in the sink or food items not cleaned and put away properly. I will do this either alone or with my husband and son helping out too. I clean the stove and counter tops and wipe up floor spills.

After dinner or any big meal, there are several times an hour bathroom visits. With 17 feet left of my intestine, any meal I eat will immediately push out old food left from earlier meals from the intestine into the pouch. That’s the first empty during the meal. Likely 15 minutes later, I will start eliminating the food I just ate minutes earlier. At home, this is not a problem. At work place situations or social situations, this is a little bit of a dance to coordinate eating and bathroom. I used to skip lunches at work places because it is just too hard to continue to press on with any productivity after a full meal is consumed. I will eat smaller snack items if possible. Some work places do not allow this on non-break times, some do. I do not work at a job if there is not water allowed at the work desk I am at. I dehydrate and become quite ill if not allowed water. If I eat small snack items, there are times when I don’t have to pop up and down to the bathroom. Sometimes it works, sometimes it doesn’t. Dietary changes or adjustments don’t matter. One day a food that was thick enough to stay in with out coming right through, will not be successful another time. I never know. There are absolutely foods that I avoid at all costs at home or out of the house.

In the evening at home, I like to watch television. Usually it is the soap operas I have taped earlier in the day. That comes later in the evening when the house is quiet because I will be up and down frequently to stop the tape to go to the bathroom. In the hours when my son and husband are home with me, that time is spent together if possible. We will watch a program, talk, and play with the 2 cats we have or the boys will make model planes in the hobby room Peter has. After 8pm, I really do not like phone calls, but will take them from a patient or friend because that is when they can talk.

Sometimes, I don’t have any mental juice left to talk and I feel guilty, but have learned to let the machine pick up the call. We don’t have caller ID or Call Waiting.

On days when I am required to leave the house, I usually try and make the appointment for later in the day. This allows for sleep from the night before to be covered and it also gives me some lead time to make myself ready to leave. The Pentasa and Crohn’s itself has been very cruel to my skin. I usually have some form of break out evident on my face or chest. Not only is this painful, but it takes time with to cover with cosmetics. Showering with an ostomy is not that big a deal, but it does take some time to dry and insure that the seal is still ‘watertight’ to put clothing on and go out. Clothing is something I really do not like any more. At home, I am ‘deconstructed’ by wearing loose tee-shirts, no bra or underwear, and I wear boxer shorts that are loose or sweat pants. The bras I wear now will never be considered for Victoria’s Secret. I wear a sports type bra with no underwire and can not contend with any clothing item that binds me in the least. When I dress to go out, the minute I hit the door at home, I go and put on my comfort clothing.

In recent months there have been more incidents than I care to recall where I have had to call and cancel or reschedule an outing because of either a rough night or deep fatigue or that I did eat that day and was having runs.

Diarrhea to an ostomate may seem redundant, but I can tell you that it isn’t. To a person with a colon, the definition of diarrhea is fairly straight forward. This is not the case with a person who has an Ileostomy. A person with a colostomy which is hooked up directly from the colon usually has thicker waste that comes into the appliance from the stoma (intestine that comes to the outside of the body to stick out to frame with an ostomy appliance product) see illustrations:



For an Ileostomate, the stoma is created from the small intestine. Without the colon to absorb the water and digestive acids which are made in the stomach and small intestine to distribute food to the body, the Ileostomate always has LOOSE stool. The colonic process of serving as the body’s waste plant is not available to the Ileostomy patient. The normal waste consistency from my ostomy may be that of a milk shake. When an Ileostomate gets the runs, the waste into the pouch is much more like acid water. Much of the time, now, this is what my output consists of.

An ostomate can not eat roughage without the danger of obstruction in the intestines. We try to balance our food intake to ensure that it is used as nutritional fuel before the body eliminates it. This is where MY case has become very difficult to maintain.

The SHORTER the small intestine is in the body, the faster food I consume runs through my stomach for distribution to the body. I have 17 feet of the normal 21 feet of small gut a healthy adult has to work with. I no longer have a colon. This further speeds up the elimination of waste before my body has gotten any worth from what I eat. Vitamins are not absorbed properly either before they are expelled. Sometimes they are expelled whole as I swallow them unless it is a gel vitamin which has a chance to be used somewhat more effectively.

In 1987, with the first surgery, I lost my entire colon, rectum and anal passage. As well, a foot and a half of small intestine was removed to cut out disease which had begun to attack my small intestine at the Terminal Ileum. My surgeon spliced back to health gut to create a stoma that ran back to healthy small intestine. I functioned at a reasonably high rate of lifestyle with little to slow me down for the very first time in my whole life. I actually HAD a life for the first time!

Until 1995.

I began to have acid runs all day and appliances would fall off daily when they are supposed to (and had) lasted 5-7 days for each appliance. I did not realize at that time that Crohn’s was again present. I did not realize that it CAN AND DOES come back even after a radical surgery to eradicate it. I had no pain as I did in the years before the first surgery. I had deep fatigue and hydration issues. I passed this off to life as a single mother with a full time job. In 1997 after a botched stoma revision surgery at St. Joseph’s Medical Center in Brainerd by Donald Wennberg (see records) I was rushed down to Abbott Northwestern where Surgeon Fredric Nemer (see records) had to cut out several more feet of Ileum and recreate a working stoma to the LEFT side of my body.

Since this time, I have found that daily life is much different from the first surgery which was life giving after nearly a whole life of Crohn’s infirmities. Since 1997, my life is vastly different and difficult to maintain any levels of sustained activities and full schedules. Now, in 2002, Dr. Ronald M. Sorenson has found not only a hernia by the stoma, but also of Crohn’s flare including the stoma and two more feet directly behind it. This greatly explains the even larger lack of energy and ability to gain nutritional value from the foods I consume. And, the vomiting of foods also is deeply problematic on several medical and emotional levels.

I have had to come to terms with the reality that I can not work at a full time or part time job outside the home where I can not be close to water, toilet, and replacement foods or a bed if I have to lay down. Further, if I throw up or need the bathroom, the only interruption or disappointment to meet deadlines is my own personal problem and not that of a productive work place.

When Peter, my husband and I owned our own family business from 1997-2001, I can tell you with absolute certainty that part of the reason our business ended up failing was that I could not be relied upon to be consistent in keeping that office running to keep Peter’s mechanics hands on the job in order to repair vehicles. As I was absent more and more, Peter was interrupted with phone calls and customer billing needs to the point where he could not work on the cars with any speed to get the jobs out in a timely manner. We did not lose our business due to bad work! We lost our business because one man was over-run and over worked in being unable to do it all ALONE. We lost our business August 2001. We filed and were discharged of Chapter 7 bankruptcy (see records) as of January 8, 2002. Much of this occurred because of my IBD illness becoming unstable.

I have become consistent with daily inconsistencies. I am reliable to let myself down and others around me.

So, now, today, I don’t do much in the way that earns our family money, but I do what I can on a volunteer basis for IBD awareness and patient to patient interaction from the safety and convenience of my home. That way I do not let anyone down but myself.

When I have to absolutely make it out of the house to pick up Jake from school or an activity such as Day Camp this summer, there have been several days when I had to call Peter from work at the very last minute before the 6:30 deadline crying because I was too ill to even do that 20 minute task. I have had to interrupt my husband taking him off a repair, away from work and go pick up our son. Thank God the company he works for is sympathetic towards our family and does not penalize Peter at such times. They have participated in CCFA fund raisers. This summer, during an especially hot spell, I was on my way to pick up Jake from Day Camp. It was 5:30pm; the deadline is 6pm to retrieve the kids. Pete’s work is between our house and the Day Camp location. The humidity and heat index were quite high and I’d felt sick all day from dehydration despite being in our air conditioned home and drinking fluids with vitamins added. I was driving and started to feel as though I was driving on marshmallows instead of car tires. The car AC was not producing enough cool air. I got scared and made it to the garage, got out of the car, went into the shop, and was feeling faint. I could not spot my husband but spotted his supervisor, Brian. I made my way over to his desk and started to speak to him, but was later told I was deadly white and then fainted in front of the desk.

Fainting was not the best move to make on a dirty and hard cement garage shop floor, but I did it anyhow. I was revived by the mechanics and began to panic as I knew I had to get Jake and did not know the time, nor did I know where my husband was. I was told that Day Care was called, and Peter who was out on a test drive did not go get Jake, but that Jim Pace, the boss went to get our son. Mr. Pace drove me and Jacob back to our home leaving my car parked at the garage lot.

THAT is what my days have become in 2002 with the disease back and active.

Let me tell you that on a good day where I feel energy and health, I try to make the best of the day in some activity like gardening or boating in season or going to a movie, going out to dinner with Peter, maybe a social visit to friends or cleaning house in a burst of frenzy so I can get something, ANYTHING accomplished. What usually follows after is deep fatigue and diarrhea again so that I pay for my good day with several bad ones. On Sunday’s Peter is home and lets me sleep as late as I need to, sometimes the whole day. It’s a great way to spend his only day off. NOT. His taking extra jobs for car repairs in our home garage after he works a 14 hour day is also because of me and my Crohn’s becoming no longer manageable.

This is what OUR daily lives are all about.

Your questions to daily living in Question E went on to ask me what was life like BEFORE my “impairment” began and I am here to tell you that there has been no BEFORE in my life. I have always managed to fake my way through life with Crohn’s Disease. Past years, I have managed to do very well. I neglected to add earlier my 1998 partial hysterectomy surgery because of the uterine adhesions (from Auto Immune based IBD) caused. I had organs sticking to intestines and other body organs (see records). Chalk up another loss to Crohn’s. These days, as I age, and due to further loss of intestine in 1997 along with the Crohn’s Disease returning time and again to what intestine I do have remaining, I can no longer fake appearing normal and productive in my day to day life.

If you think that I like it this way and that I enjoy not participating in my son or husband’s life at full tilt, you are mistaken. If you think that I enjoy not working at a career I loved dearly, you are mistaken.

If there was any other way that I could financially help my family rather than apply for SSA, I would do it.

You wanted a picture of my day to day life, and I have done my level best to give you that picture with honesty and integrity.

* * * * *

THIS WAS SENT IN THE SECOND ROUND OF QUESTIONS AFTER FIRST INTERVIEW AND WAS MAILED TO THE OUT OF TOWN CASE WORKER DECIDING THE CLAIM

To Whom It May Concern:

I HAVE DONE MY UTMOST TO FILL OUT THESE FORMS AS THEY ARE WRITTEN.

MOST OF THESE FORMS DO NOT FIT WHO I AM IN ANY JOB OR PERSONAL SITUATION.

I HAVE BEEN SICK ON AND OFF SINCE AGE 13-14 (PUBERTY) WITH CROHN’S DISEASE.

IN MY WORKING CAREER BEGUN IN 1979, I HAD PROBLEMS DURING TIMES OF DISEASE FLARE, BUT THERE WAS ALWAYS A DIFFICULTY IN MAINTAINING A BALANCE OF NUTRITION OR MANAGING PERMANENT DIARREAH UNTIL 1987 WHEN I HAD THE FIRST ILEOSTOMY SURGERY REMOVING SOME SMALL INTESTINE (AT TERMINAL ILEUM), ENTIRE LARGE INTESTINE (COLON), RECTUM AND ANUS.

AFTER THE 1987 OSTOMY SURGERY, NUTRITION AND HYDRATION WAS ALWAYS A CONCERN. BATHROOM BREAKS WERE FREQUENT DUE TO HIGH ILEUM LOOSE STOOL RELEASED INTO THE OSTOMY POUCH WHICH MUST BE EMPTIED OR AN ACCIDENT WILL OCCUR WITH THE POUCH LEAKING OR BURSTING. SOME EMPLOYERS DID NOT RESPECT OR HAVE REGARD FOR NON BREAK TIME BATHROOM NEEDS. SOME EMPLOYERS WOULD NOT ALLOW WATER TO BE PRESENT IN WORK STATION.

IN 1997, AFTER BEING SICK FOR NEARLY TWO YEARS PRIOR, I HAD FURTHER SURGERY TO REMOVE MORE TERMINAL ILEUM SMALL INTESTINE. I NOW HAVE 17 OF THE NORMAL ADULT 21 FEET. THIS MADE PHYSICAL WORK SOMETHING TO PROTECT MYSELF FROM AND MOST EMPLOYERS DO NOT UNDERSTAND BECAUSE MY ILLNESS IS INSIDE, MY OSTOMY BAG DOES NOT SHOW OUTSIDE CLOTHING. I “LOOK” HEALTHY, AS A WOMAN I CAN WEAR FACIAL COSMETICS TO FURTHER “SELL” THE LIE OF HEALTH. SINCE THE 1997 SURGERY, I AM ALWAYS FATIGUED. I HAVE MALNUTRITION ISSUES AND HYDRATION PROBLEMS DUE TO SHORT INTESTINE AND FOOD DIGESTING AND BEING ELIMINATED TOO QUICKLY AFTER EATING OR DRINKING.

I DO NOT HAVE AN ‘AFFLICTION’. I HAVE A CHRONIC DIBILITATING ILLNESS WHICH CONTINUES TO DESTROY REMAINING INTESTINAL FOOTAGE. I HAVE HAD CROHN’S SINCE PUBERTY. AT AGE 41, I CAN NO LONGER FAKE IT OR MANAGE EVEN PART TIME WORK ON A REGULAR SCHEDULE OUTSIDE THE HOME. THE CURRENT SSA DEFINITIONS FOR CROHN’S DISEASE ARE NOT CURRENT WITH LEGAL MEDICAL FACT AND I FEAR THAT I WILL NOT MEET WRONGLY SET PARAMETERS TO QUALIFY AS DISABLED. THE ILLNESS IS NOT COMMONLY KNOWN AS ‘REGIONAL ENTERITIS’ AS YOU HAVE IT LISTED IN YOUR RULES. IT HAS NOT BEEN CALLED THAT FOR AT LEAST 30 YEARS.

PLEASE READ ALL SUBMITTED PERSONAL MATERIALS TO PROVE TO YOU THAT I TRULY AM ILL.

I WISH I WAS HEALTHY. I WISH I WAS HEALTHY BECAUSE I HAVE A YOUNG SON I FEEL IS STUCK WITH A MOTHER WHO CAN NOT DO ALL THE THINGS MOST MOMS CAN DO. I HAVE A WONDERFUL HUSBAND WHO WORKS HIMSELF TOO HARD TO MAKE UP FOR MY LACK OF DECENT FINANCIAL CONTRIBUTION. I WOULD WISH FOR HEALTH TO NEVER BE IN A HELPLESS POSITION TO BEG FOR SOMEONE ELSE TO JUDGE ME AS DISABLED. I WISH I WAS NOT DISABLED.

BUT CROHN’S DISEASE AS IT HAS ATTACKED MY BODY HAS DIMINISHED MY CAPACITY TO BE CONSIDERED ABLE BODIED TO CARRY FORTH A FULL TIME JOB OUTSIDE THE HOME.

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[1] Jennifer C. Jaff is a partner in the Hartford, Connecticut law firm of Killian, Donohue & Jaff, LLC, and is a patient with CrohnƠs disease. She is admitted to practice law in Connecticut, New York, and the District of Columbia.

[2] There may be some special circumstances in which a patient is not entitled to records, i.e., when state law says that a doctor need not provide records to the patient if the doctor thinks it would be harmful to do so. However, in such circumstances, there is a procedure for contesting this determination in state law.

[3] Many private disability insurance policies require that you apply for SSDI, which is then offset against the private disability insurance benefits you receive.

[4] The following are the cases available as of November 2002. If you need access to the military/veteransƠ decisions or the employment cases, let me know and I can copy and mail the ones in your jurisdiction. The employment cases in particular require a fair amount of work and research to analyze and the subject matter is beyond the scope of this Handbook.

[5] This research was conducted in November 2002. New cases are decided every day. Attorneys should update the research.