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Hey everybody!
I hope to find some answers to my problems here or at least some opinions Wink Maybe some of you had the same problems.
I have to apologize for my English in advance as I'm from Germany and I'm not used to talk about a topic like this, so please forgive me if I use the wrong words for something Roll Eyes

First, to my person: I am 20 years old, male and was sick with Colitis Ulcerosa. The desease started in June 2010. Since then I was doctored with a lot of medicines like Cortison, Azathioprin, Salofalk and even Infliximab but nothing of this could cure my CU, it always came back. So I had a surgery in March 2012 where my whole colon got cut out and I got a stoma. In May 2013 I got a J-Pouch.
In the beginning everything went fine, I had no problems with holding back the stool for some time (1,5h were possible) and I had no pain. Also I had no problem with incontinence during the night. But after about half a year there occured some problems.
There are periods where it hurts to hold back the stool (I mean when I actively have to use my sphincter). It's not all the time, it's more like about a week or a little less where this problem occurs and after that week this problem disappears for some time (can't name a specific time, but about 3-4 weeks I guess). It's not a very strong pain that is really hurting very much but it makes it hard to hold back the stool. When I don't have to hold back stool there is no pain at all.
Furthermore I have problems with incontinence during the night for some months now. As I said in the beginning I didn't have these problems for about half a year after the surgery so I think it's quite strange that this problem appears now. My stool might be more liquid as in the beginning, but even if my stool is as it always was this incontinence appears during night. It's not a huge amount of stool but still very uncomfortable...
And my last problem is that sometimes there is blood in my stool. This doesn't/didn't occur very often but it was strange. The first time it happened I had no problems (except the incontinence over night but that problem existed before the blood as well) and I didn't feel any pain. But there was a huge amount of blood in my stool for about three bowel movements. Then I had a small Pouchitis where blood was in my stool as well. I doctored it with antibiotica and I felt better soon. And the third time there was blood in my stool it was like the first time, I had no problems and didn't feel any pain but there was blood in my stool again for about three bowel movements.
I visited a doctor twice, once after I first had this pain while holding back my stool. He said everything was fine. And second when I had the problem with this small Pouchitis, but except this everything was fine as well and he didn't have an explanation for my incontinence.

So, my questions are now:
Did you experience this pain while holding back your stool? Were you able to solve this problem?
What can I do against the incontinence? Did you have similar experiences that you first didn't have incontinence but then as well?

And some more general questions:
What do you do to have a less liquid stool?
How many times do you have to go to the toilet?

I know it's a long text but I hope a lot of people read it and have some help for me! Smiler

Greetings!

Replies sorted oldest to newest

When I have symptoms like that (other than the bleeding) it seems to mean that I have pouchitis. Some cases of pouchitis have to be treated all the time with antibiotics. Other people get it only occasionally.

I don't know about the bleeding. Has your doctor taken a look with a scope? Sometimes it's just hemorrhoids, sometimes it's cuffitis. It's not typical of pouchitis, but that can happen, too.

Strong probiotics can help prevent pouchitis. The best studied one is called VSL #3. A very low carbohydrate diet also seems to help.
Scott F
Well, I described the symptoms to my doctor and he took a look at it with the scope, yes. But he didn't find anything concerning the pain, that occurs when I hold back the stool. Furthermore he wasn't able to find a reason for my incontinence.
When I had blood in my stool more often I also felt really sick, that was when I got the light pouchitis. But as I told, that is not the problem. I know what was happening there but I don't know what's happening, when I have the pain while holding back the stool and I also have no idea why I have this incontinence over night.
But I'm sure it is no pouchitis as I had this kind of problems even after I cured the pouchitis with Minocyclin.
I contacted my doctor once again and he wants me to do a magnetic resonance imaging of my pelvis.
Does anybody have experiences with this?
E
quote:
But I'm sure it is no pouchitis as I had this kind of problems even after I cured the pouchitis with Minocyclin.


How do you know you cured the pouchitis if the symptoms persisted? Some antibiotics (Flagyl, Xifaxan) simply never worked on my pouchitis. Cipro, doxycycline, and Augmentin have worked pretty well. I know there might be more to the story than you've written, of course.

Jan periodically points out that the way the pouch looks seems to sometimes be very different from the severity of pouchitis.
Scott F
I'm sure that it's no pouchitis because I had it checked more than once with a scope and my doctor told me that everything looked just fine.
And it's not like I only had it checked when there were no problems anyway, but I also had it checked when this problem occured.

But is it right that nobody of you had this kind of symptoms (pain only while holding back the stool in periodic intervalls, incontinence over night after a quite long time with pretty well continence)?
E

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