Here is a sample of some of the questions you have asked with the answers below them.

I am sorry we can no longer answer private email as Grace has retired.

Please go to our discussion site where your questions will be answered online.

Bill




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.

Grace




Chronic Pouchitis

Dear Grace,

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




Obstructions

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



Strictures

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




Fistulas

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





Incontinence

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





The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


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