Here is a sample of some of the questions you have asked with the answers below them.
Posted Jun 02 2009 4:38pm
Medications & Diet
I had my surgery 2 months ago (J-pouch) and I am still having discomfort. I have been taking Darvocet-N 100 and that seems to help me relax a little, but I am concerned that I may be getting addicted to it physically or mentally, I am not sure. I am planning to travel overseas for three weeks and I don't know if that is the right thing to do right now. I would also like to know if there are any medications that may help decrease number of bowel movements during the day. Also what kind of foods do you recommend at this time to help reduce the discomfort and irritation. Thank you.
Many of the people in our support group are placed on immodium and metamucil or citracil. Also, apple pectin helps to control the number of bowel movements. Pectin and metamucil are over the counter. You should not be having so much pain 2 months post-op. You may have a stricture at the site where your pouch joins the rectum. Some people have pouch spasms. You should keep a record of what you eat and the way your body reacts. Alcohol can cause problems and some people are lactose intolorent, which causes problems when milk and dairy products are consumed. Lactaid products could help with this. Otherwise have patience as the pouch needs time to mature. Travel is OK, but watch fresh foods, fruit and water. Pack bottled water and toilet paper.
Dear Grace, Hello. I have been diagnosed so far with ulcerative colitis. I was hospitalized for several weeks at Mount Sinai Hospital in New York City and recieved cyclosporine treatments and cortisteroids. I have now been home for 2 months on oral cyclosporine and prednisone. I have had every side affect you can have. My problem now is that they still cannot determine if i have Crohns disease, which my father has and there is a possibility that I may have it. Is it possible to have both ulcerative colitis and Crohn's disease? , and what about surgery? , Can I still have an ileo anal done? Or will this interfere with the Crohn's disease if I have it. I am very confused. If they could tell me I only had colitis I would be on the cutting table tommorow, but I donÕt know if Chron's will interfere. Can you help give advice on this matter. Thanks.
Thank you for your message. There are many people like yourself who have difficult to diagnose; ulcerative colitis vs Crohn's disease which is sometimes referred to as "indeterminate colitis". Whereas in most cases, the differential diagnosis is easily made with a biopsy, in indeterminate disease, this is not so. Additional evaluation is needed. This makes your care more complex and therefore understandably more confusing. Fortunately, you have selected a place where the doctors see many patients with inflammatory bowel disease and have a great deal of expertise in handling difficult situations like your own. Sometimes, it takes time to sort this diagnosis out.
It does sound like there is somewhat of a communication gap between your physician and you. It might be a good time for you to sit down and hash out the questions that you've raised with your physician. It's a good idea to take someone else with you and write down all of these questions ahead of time. It's very important for any patient to be able to talk comfortably with their doctor and get the information that they need. Not all the questions will necessarily have an answer right away, but patients should leave their office visit with a general understanding of their condition and course of evaluation or treatment.
In general, j-pouch surgery is only for patients with ulcerative colitis or familial polyposis. It is not for patients with Crohn's disease. There are approximately 10 percent of patients with Crohn's disease who have "Crohn's colitis" which is Crohn's disease that just involves the colon. J-pouch surgery is not indicated for these patients either. If your doctors determine that you most likely have ulcerative colitis, then the j-pouch may be the way to go.
Let us know how you make out. We wish you all the best! Good health, Grace
My husband is 1 year post op j pouch. Takes immodium, psyllium seed fiber, tinc. opium, iron, & still has 15 BM per day at least. Does not have pouchitis. Surgeon does not seem to know what else to try. My husband is very discouraged. Any suggestions? He has been to colon surgeon, gastroenterologist, internist, hypnotist, psychiatrist
People adjust at different rates to their pouches. It is hard to make the transition. I would suggest checking foods as this can sometimes be the culprit. Try something bland like pasta, rice, mashed potatoes and add vegetables and meat one at a time and check results. If diarrhea occurs, eliminate that food. Does he have a lactose intolerence? Also try Metamucil wafers instead of psyllium. Pectin (from apples) also has been found to be effective. He should also practice holding the urge to go for a time (10-15 minutes if possible), increasing the intervals to increase pouch capacity. Be aware he will have the urge 30-45 minutes after eating. Some people have tried biofeedback with some success. Sometimes, patients have irritable bowel syndrome along with their inflammatory bowel disease. Therefore , some physicians have tried to use medications that help with the irritable bowel syndrome and at the same time, improves their pouch function. Good luck, Grace
Surgery and Crohn's
Dear Grace, Can you try to explain why surgery is not permitted for Crohns patients? Can it cause the patient to get worse?
Thank you for your question. Keep in mind that Crohn's disease can involve any segment of the GI (gastro-intestinal) tract from mouth to anus and can effect all layers of the bowel ie. the mucosal, muscular and outer layer . Ulcerative Colitis effects only the large bowel or colon, and only involves the mucosal or inner layer of the colon.
Briefly, in ulcerative colitis, removing the colon removes the organ that is diseased and therefore removes the disease. It is "the cure" for ulcerative colitis. No more colon, no more disease. In Crohn's disease however, the small bowel (intestine) is frequently involved. Removing the colon in Crohn's disease patients does not eliminate their disease because the disease can flare up in the remaining small intestine. Therefore, this surgery would not be a cure or solution for Crohn's disease patients.
I have chronic pouchitis. Currently take Flagyl orally. Looking for alternatives. Thanks.
As you are probably aware, the cause of pouchitis is not known. One of the factors that may contribute to chronic pouchitis is that the pouch may not be emptying adequately with each bowel movement. This incomplete emptying causes stasis of the stool- in other words- stool lying in the pouch for prolonged periods of time, lending itself to overgrowth of certain bacteria causing pouchitis.
Sometimes by supplementing the diet with apple pectin (or other fiber products such as metamucil or citrocel) it helps with consistency and ability to eliminate the stool more completely. Also consider altering the body flora (with beneficial bacteria) by adding plain yogurt or acidophyllis milk or tablets. People on antibiotics for a long time upset the normal body flora. No promises, but hope this will help. Please keep in touch.
Good luck, Grace
Have you heard of anyone having small bowell obstructions at the site of reconnecting the stoma, or where the bag was. I seem to have blockages pretty frequently, about every weekend. I don't know exactly what causes it but I feel it is a combination of scar tissue at the area of reconnecting the small intestine, water loss, Gas, and foods not broken down enough with chewing. I have noticed that the obstructions are not as intense as they were 2-3 months after my 2nd step surgery. I am now in my 10th month after, and this is my biggest problem. I just lie down and watch the intestine swell up and bulge out at the site where my bag was. After about an hour I'll hear and feel a pop and the food will pass thru the area of the blockage and then all is ok.
The fact the blockages seem to occur mostly on the weekends makes me question your lifestyle changes on the weekend or any dietary changes. Some people do mention minor discomfort in the area where the stoma was located.
Keep in mind that during the time that patients have a diverting ileostomy, there is a segment of bowel connecting to the j-pouch that is "at rest". (Take a look at Figure 3 in "What is ileoanal surgery article?" on this website and look at the segment of bowel traveling down from the temporary ostomy to the j-pouch that is "at rest"- this is what I'm referring to). Because this portion of the bowel is not in use for a few months, it can lose some of it's tone. It can take up to 6 months or so for that tone to return to that section of bowel after the ostomy is "taken down" (removed), the bowel is reconnected and stool starts passing through the bowel again. During this time there may be some alterations in this segment of bowels' ability to move food smoothly forward towards the pouch. This may be part of the reason that you've had some what sounds like partial blockages. This motility improves with time. It sounds like you have experienced some relief already. Sometimes adhesions are involved but rarely does it require another surgery. Be sure to keep in touch with your surgeon about this as well.
For now, try placing a heating pad over the area when it causes discomfort. Smaller, more frequent meals (5-6 meals a day instead of three) also may give less of a bolus of food at any one time. You are correct to think about chewing your food well. Avoid heavy meals, drink plenty of fluids and lessen high fiber meals as they are harder to break down.
Take care and congratulations on sucessfully completing your surgery! Grace
I had my second surgery in August and everything is going pretty well except that I have a stricture where the J-Pouch is sutured to the top of my anus and I've had to be dilated 4 times already because of narrowing. I have no pain associated with this except for the dilation of course, but when it narrows I start to have a leakage problem. I don't have gross incontinence, but the leakage is annoying and somethimes causes irritation. Is this normal in some cases? My surgeon says that we will eventually win and it will stay open. Is he right? Thanks.
Anal strictures do occur, although not too often. Leakage occurs as it narrows, usually secondary to the pouch not being able to empty efficiently. Your surgeon is right. It will eventually stay open. The problem is caused by scar tissue which is broken up with the dilation. Eventually it no longer forms. Hang in there. Good health. Grace
Hello, I had j-pouch surgery 4 years ago due to Ulcertive Colitis and have been very happy with the results with one exception. About a year ago I began having some problems which my doctor suspected to be pouchitis but discovered that I had two anal fistulas during examination. I have been on antibiotics for one year now with the hope that the fistulas would go away but they have not and now my doctor is referring me to a surgeon.
Are anal fistulas common in persons that have pelvic pouches and what are the treatment options for the pelvic pouch patient with anal fistulas?
Fistulas are not uncommon. Sometimes they resolve with antibiotics. In persistent cases you may need a temporary ileostomy (6-8 weeks at least) to allow it to heal without stool irritation. Usually they heal on there own. Patience is a virtue here. Grace
I had the stoma reversal on 11/19, went home the weekend before Thanksgiving only to return on Thanksgiving Day with a fistula. Corrective surgery was done on Tuesday, 12/3, wherein 2 1/2 inches more of the bowl was removed. I have been at home less than 2 weeks and I am taking Lomotil Imodium. I am greatly concerned with the incontinence. Because I move so little stool at one time (with little control), I must stay on or near the toilet for an hour, or hour a half, before the urge to eliminate stops. Is this common? If so, how long before it improves? Is there anything else I can do to improve my situation in the meantime? Thank you for making the Q&A available. I feel there should be more discussions about all the potential problems one might incur after the J-Pouch Surgery. They should be discussed at length while still in the hospital. After having the surgery and returning home, one needs to know what is normal and what is not so normal. Thanks again!
Only wished that you lived closer to Philadelphia because we have a fantastic group that discusses the surgery and problems. You must be patient, the body has to adjust. Remember your large bowel has been removed and your small bowel is now trying to take over that function. A half hour to forty five minutes after eating you will probably get the urge to move your bowels. As the pouch matures the urge will lessen. Your mind set still goes back to the time of your U.C. and you are still afraid you cannot leave the bathroom. Practice holding your bowel movement for as long as you can 5 minutes, 10 minutes, 15 minutes and increase the length of time each episode. You will also learn how to discern between gas and stool. Usually it takes anywhere from 3 months to a year to finally adjust. Be patient with yourself, better days are coming. Grace