Suggestions for Patients of Ulcerative Colitis (UC)

The following list of suggestions was prepared by a longtime patient of ulcerative colitis. They are recommendations that he has found helpful in the control of his condition, and it is hoped that others, too, will find assistance with them. Although this disease is incurable, it can be controlled, and many things can be done to make the patient's life more comfortable. These are some of them.

1. First, one of the comforting things that help newly diagnosed people to feel easier about their state is that life is not perfect for anyone. No one passes through this arduous voyage called life without being touched by good things and unfortunate things. Our condition is definitely among the latter, but it can be dealt with and in fact reasonably held in check if one follows a very disciplined life.

2. Don't be depressed by the fact that UC cannot be cured. True, it is hereditary and therfore will probably always remain incurable, because genetic engineering (alteration of defective genes) thus far is not possible for elimination of most human illness. The summer, 2003, issue of Foundation Focus, p. 25, mentions that

   "geneticists believe that multiple genes are involved in IBD. Researchers must now hunt down the other genes that may play a role in IBD. They also must determine how these genes function in relation to the natural environment of the gut."

   Further, the fall, 2004 issue, p. 6, of Under the Microscope-Research News Bulletin from the Crohn's & Colitis Foundation of America states

   "A study of 272 patients with ulcerative colitis and 247 controls identified specific genetic mutations that predicted severe disease in ulcerative colitis. In additon, other investigators discovered a link between a mutated gene (MDR-l) and ulcerative colitis."

   However, to suspect and identify this genetic problem is one thing; to correct the defective aspect of the genes is quite another.

3. Since UC is genetic, it is probably wise for its sufferers to remain childless. After all, no one wants to pass along such a serious condition to a descendant. In my own family, one of my grandfathers had UC, his wife had diverticulitis, Dad had hemorrhoids, Mom has Crohn's, and I, of course, UC.

4. The theory that makes the most sense to me about the cause for UC is that the lining of the colon is somehow allergic to itself, as determined by heredity. In a way, it is trying to digest itself; therefore, inflammation develops. The body's immune system evidently is overly active, as in the case of nasal allergies. Logically and unfortunately, many patients of UC have severe allergies, also.

   The action of Azathiopriine or Imuran, a powerful drug that is used to prevent rejection of transplanted organs, is often used to treat UC. Its action is to reduce the strength of the immune system. Thus, the theory that an overactive immune system (doubtless a genetic defect), as mentioned above, is responsible for UC is indeed logical.

5. It is very important for sufferers of UC to realize that they must live a life much more disciplined than the average person. This is especially difficult or young men who want to prove their machismo by doing everything and eating everything. This is simply not possible with UC, and its sufferers must live a quiet, somewhat uneventful, perhaps artistic life, surrounded as much as possible by positive karma. Strenuous physical activity like long distance running and competitive, contact sports is simply not possible with this condition.

   In my youth, I knew a young man with UC who spent his life doing lengthy motocycle trips around the country and eating massive amounts of comida mexicana. Of course, his condition was quickly out of control. He refused to listen to his doctor's recommendations for a bland diet and subdued activity and was forced to have his colon removed at the age of 26. He was not happy about it.

6. In my experience the single most important factor in controlling UC is DIET. There is nothing so important. There are many good things that we can eat safely, but certain foods must be avoided at all times, even during periods of remission. Remember that eating the wrong thing and then using medications to resolve the inflammation they cause is not a good syndrome because of the negative side effects of the medications. One of my doctors once told me, "Take as little medication as possible to control your condition, and follow your diet above all."

7. Some doctors today say that UC sufferers can eat whatever they want because the partially digested food that enters the colon (called "chyme") is relatively generic in nature, regardless of what foods it consists. This is not true! My lengthy experience with this condition has shown that several foods must always be avoided. Such avoidance can dramatically improve our health. Here are some advisements:
   1. All raw vegetables, particularly lettuce and cabbage, are highly fibrous and therefore very irritating to the colon. Avoid them at all times. America's obsession with the high fiber diet is exactly the wrong thing for us. On the other hand, softly steamed vegetables of any kind (except corn because it is so fibrous) can be eaten in abundance and have wonderful nutrition.

   2. All raw fruits except one should be avoided. Like raw vegetables, they are too fibrous and acidic for us and should always be off limits. A raw apple, for instance, has more acid than a grapefruit and only a little less than battery acid! On the other hand, baked apples digest beautifully. The one raw fruit that is well tolerated is bananas (particularly very ripe ones), because they have no acid and possess less fiber than other fruits. In fact, they are soothing. Other fruits like peaches, pears, fruit cocktail, etc. can be enjoyed if canned and thus cooked. Canned pears (in natural fruit juices, not sugery syrups) are quite beneficial for UC. Also, a few drops of lemon juice in water every day have a soothing effect on the colon.

      All raw melons like watermelon and cantaloupe are very irritating for this condition and are off limits.

   3. Carbohydrates (breads, cereals, pastas) are fine for the condition, but avoid rough "seven-grain" breads and other whole wheat products like rye bread and whole wheat muffins. However, an occasional bran muffin is generally fine. Avoid dry, prepared cereals like Grape-Nuts (which are akin to eating gravel, although delicious gravel!), and go for the softly cooked cereals like Cream of Rice. Avoid Cream of Wheat, since it has added iron, which irritates the colon.

   4. All meats and poultry are excellent for UC and provide a great deal of nutrition. Many dieticians recommend the avoidance of beef and pork, but actually they are beneficial for UC, as is any kind of seafood. Of course, shellfish has harmful cholesterol, but seafood without a shell like halibut, tuna, and salmon digest very well and provide soothing fish oils for the colon.

   5. Avoid milk and cottage cheese of any kind. They are highly irritating to the colon. However, solid cheeses and ice cream digest beautifully and provide good nutrition. Ice cream has no irritating effect since it is prepared in a heating process that destroys the proteins present in raw milk that cause colonic irritation. In fact, ice cream is actually quite soothing for UC.

   6. Never eat nuts or seeds which are frequently present in certain breads and desserts. Nuts provide good protein for those who can digest them, but we cannot. Seeds really provide little nutrition, and like nuts, are very difficult to digest. Popcorn is even more harmful than seeds or nuts and should never be eaten. The smell of fresh popcorn in the theater is tempting, but it is one of most difficult foods to digest and should be avoided.

   7. Regarding spices for foods, avoid any kind of pepper (cayenne, black, etc.) or any generally spicy food like Indian dishes prepared with curry, but salt, onion powder, dill, lemon, orange, nutmeg, cinnamon, and many other mild spices are fine for the condition.

   8. Always eat slowly and chew your food thoroughly. This breaks down the fibrous material which can irritate digestion and reduces the potential problem of regurgitation.

   9. In regard to beverages, herbal teas, caffeine-free teas, water, and some juices like apple, cranberry, and raspberry are well tolerated. Only 100% juices should be used, not the "juice cocktails," which have only a small percentage of real juice. No more than one glass of juice should be drunk in a day's time to avoid problems. Citrus juices like orange and grapefruit usually are not tolerated because of their acidity, although sometimes a small glass of orange juice thinned with half water may be tolerated at the end of a meal. An occasional lemonade also may be tolerated.

      Of course, no alcohol at any time, including wine and beer, should ever be consumed. The process of fermentation that is required to produce alcohol is a process of spoilage, and we must face the fact that all alcohol is bad for the body. It accelerates aging, is negative for everyone's digestion, and, naturally, harms the liver. The studies that claim that some wine is good for the heart are flawed and questionable. The proof of this is that each study says at its conclusion, "If you don't presently drink, don't start!"

      Coffee, whether caffeinated or decaffeinated, should be shunned. It is an intestinal irritant and, further, has no nutritional value.

      Do drink lots of water every day, particularly if you are taking Azulfadine. This helps to flush the harmful effects of this medication and any others from your system.

8. Regarding all foods and beverages, it is important not to eat or drink anything simply because it's convenient and you're away from home and cannot prepare the appropriate items. Just wait until you're in a position to prepare or find the proper sustenance. Whether at home or away, it's always best to avoid "dietary indiscretions!"

9. It is advisable to take a multivitamin tablet each day or perhaps a number of individual vitamin pills like B-complex, C, A-D combination, and calcium. But be careful to avoid vitamin tablets with added minerals. Although zinc can be tolerated by UC patients, iron, iodine, and magnesium do cause colonic irritation and should be avoided. Magnesium is often added to calcium tablets to make them absorb better, but such a combination must not be taken. Instead, choose a calcium tablet with only calcium or perhaps with added vitamin D, which also helps in absorption.

   Many patients find that two Omega-3 Fish Oil tablets per day can be helpful for UC.

10. There is much to be said about exercise. Moderate weight training and cardiovascular exercises are very beneficial for UC, unless the patient is dealing with a flare-up. But when the inflammation improves, a regular exercise program should be resumed. A good weekly regimen to follow is to do weight training three days a week and cardiovascular training such as walking, outdoor biking, use of a stationary bike or a ski machine three other days of the week. The duration per day is appropriately about 60-90 minutes. One day off per week is beneficial.

    All types of exercises that are reasonable in nature are good for this condition except the following:

    1. The ab machines, "crunches," and sit-ups that many people use to create the great "six-pack" look in the abdominal area are exercises that should always be avoided. They can cause immediate inflammation in the colon because they crush the colonic tissue together. On the positive side, since UC tends to keep people thin, most of its sufferers do not develop significant abdominal weight, but having the really buff tummy look is not possible since these types of exercises cannot safely be done.

    2. Avoid long distance marathons or lengthy runs, particularly on concrete and ground surfaces. These types of exercises are simply too demanding, and the pounding on hard surfaces shakes and irritates the colon.

       Moderate runs on the carpeted surfaces of a gym track are usually well tolerated, however.

       One exercise that is particularly beneficial for UC is the standing pull-down. Stand in front of a horizontal bar, draw it slowly down to chest height, then let it return slowly upward to its resting point. This exercises tightens the stomach area but does not produce irritation like crunches and sit-ups and actually helps UC.

11. Never deny the urge to evacuate the colon. The colonic contents are waste products and should be eliminated as quickly as possible. We can eliminate many problems with excess gas, bloating, and backups.

12. Seek a conflict-free home environment. Live with pleasant people, family or mates or alone. Be pleasant and positive yourself, and you will find that most people will respond with like feelings. If they don't, avoid them.

13. The work environment should be kept as free of stress as possible. One way to avoid stress is to be well organized and timely with your assignments and duties. Don't procrastinate; accomplish your necessary activities early and with good organization, and maintain agreeable, cooperative relationships with your co-workers.

14. Sleeping position can influence how we feel. The least irritating position for UC is lying on the left side with the legs drawn up toward the stomach. When lying on the back, tilt the head slightly to the left, not to the right. You will find that you feel better!

15. If you must stand a lot, as in the case of teachers, barbers, cashiers, etc., shift your weight to the right foot. This eliminates stress on the left side of the colon where our problems usually exist.

16. It is very important that the UC sufferer not become overtired. Rest is a very significant factor in the treatment of UC. It helps the medications work better, and it reduces the need for so many medications.

    In some cases, one's condition may be so difficult that a full-time job is out of the question. In these cases, a Social Security disability should be sought. It is invaluable in supplementing the income of someone who is simply too weak to work a usual 8-5 schedule. If the patient is able to secure such a disability, he can then devote more of his life to restorative rest. Additionally, the frequently frail, vulnerable appearance of UC sufferers makes it difficult for them even to find full-time employment. After all, companies want healthy workers to fill their job openings. In these cases, the Social Security disability would give needed supplement to the patient's income.

    As discussed in the winter, 2005 issue of "Take Charge," on November 30, 2004, the current administration signed into law the "Research Review Act," a bill that deals with Crohn's disease and ulcerative colitis. This bill seeks to identify the prevalence of these two diseases in America, and it will study the degree to which Medicare and Medicaid cover treatments needed by the sufferers of these diseases. Further, it will report on the challenges that IBD patients find when they apply for Social Security Disability. There will be recommendations for improving disability coverage for these patients.

    At present, the process for applying for any Social Security disability is lengthy and complex. The many forms to be filled out are surprisingly lengthy, and even to apply for a disability requires that one earn an absurdly low salary. A patient might be in a full-time job (whose salary would not qualify for disability) and might believe that it is too much effort for him, considering his illness. However, making an income above the minimum would exempt him from even applying. Besides, the vast majority of claims are denied after a long wait, and the patient must fight on after the denial with an appeal. He will probably have to use a lawyer to assist in the process. Even then, many legitimate claims are denied.

    It is hoped that this new bill will reduce the paperwork needed to make application for a disability and the time required to await a decision. Further, a higher salary should be allowed to make application. Most importantly, the Social Security Administration must be educated to the fact that most UC and Crohn's patients simply do not have the energy to deal with the demands of a full-time job and should be helped with a disability. The SS Administration must be far more open in actually granting these patients the disability payments that they need.

17. A factor that is often associated with UC is diminished self-esteem and possibly depression. The fact that the condition is incurable and so recurrent can make one feel less confident in dealing with interpersonal relationships and work situations. The fact that UC ematiates the body during flare-ups since food is not digested properly further affects the ego, particularly during youth when physical adequacy is so important.

    An effective way to counteract these psychological factors is to seek family members and mates who are supportive and positive in their outlook and who will give the UC sufferer sincere support with his or her condition.

18. UC sufferers have great difficulty adjusting to significant changes in their lives, particularly the loss of family members who have been very supportive of their health problem. We usually settle into a routine of daily activities, job-related duties, family settings, etc., and find it difficult to adjust to changes in them. Again, the support of family members is essential in helping the patient to make these necessary psychological adjustments when change is unavoidable.

19. Regarding medications for UC, much can be said. I personally favor Azulfadine among all the oral medicines. It does have many side effects (headache, nausea, ringing in the ears, slight hearing loss, a small reduction in energy level, a bit of burning of the eyes, and intolerance to sunlight), but overall it is the least toxic that I have found. Always take the "enterically coated" tablets, as this type reduces the side effects (in particular, the nausea). Azulfadine tabs cost less than any other UC medication, perhaps because they've been in production longer than the others.

    Pentasa tablets heal the colon more completely than Azulfadine and do not make the patient intolerant to the sun but cause a very annoying peripheral neuropathy-numbness and tingling in the lips, tongue, and limbs, which persists long after the medication is stopped.

    Asacol tablets cause severe respiratory infections like bronchitis and are inadvisable. Also, they are far more costly than Azulfadine.

    A new drug called Colaza has just been introduced. I have not tried it, but my doctor says that is promising.

    Azathiaprine (Imuran), previously mentioned, is a very potent drug sometimes used in the treatment of UC. It reduces the strength of the immune system, as discussed on page 2, and remember that it is thought that an overly active immune system (as influenced by heredity) is part or all of the cause of UC. The secondary effects are unpleasant and include severe headache, a tendency to develop respiratory infections, weakness, and tiredness. However, the drug is highly effective, and the side effects disappear a few months after the medication is discontinued.

    A new medication, currently in clinical trials, works similarly to Azathia-prine in reducing an overactive immune system. It is called Daclizumab or Zenapax. Like Azathiaprine, it is used also to prevent rejection of transplanted kidneys. To join the trials for Daclizumab, just call 1-800-7720482, or visit www.prospectstudy.com.

    The costly Rowasa enemas are very helpful for topical treatment of inflammation. They are wonderfully soothing and help the patient to sleep better, particially due to the potassium they contain. As with Pentasa tablets, their major side effect is neuropathy. It is better to use about 1/3 of the enema each evening before retiring rather than the entire enema. It is less expensive and is expelled much less frequently. The medication should be retained in the colon all night if possible for maximum effectiveness.

    Avoid any medications with cortisone or steroids such as oral cortisteroids or Cortenema. These products are not really helpful in reducing inflammation, and like all cortisone and steroid preparations, can cause a devastating psycho-logical condition known as "steroid psychosis." The symptoms are severe anxiety attacks and must be treated with tranquilizers. The psychosis can last for years after the medication is stopped.

These tests require about a day's preparation that is somewhat unpleasant, but the tests themselves are done with full anesthetic and involve little or no discomfort.

In summation, we must realize that the human body is an excessively complicated and very delicate machine. If we had the power, we would make it much simpler and much stronger, but as far as we know, no new, improved model is coming out anytime soon! Ulcerative colitis patients have a further delicacy that must be dealt with for their lifetime.

But remember that with this disease, as with any chronic illness, our goal is to achieve a relatively symptom-free life, that is, a lasting remission without disfiguring, painful surgery or large amounts of troublesome medications. This objective is achievable by most patients if they are willing to follow the disci-plinied life outlined in these pages. In this way they can look to the future with hope and optimism.

As one of my doctors once said, "The best way to have a long, happy life is to have a chronic health problem and take care of it properly." Good advice!

If you have any questions or comments, please send me a note: Stephen Pallady