Hi to all of you, it's me again. Having had a 1step IRA surgery on December 11th.

It's been 9 months now, and one should think that everything should have adjusted by now. Still, life isn't as it should be, and I'm getting more and more frustrated and depressed about it.

I'm taking 2 Imodium in the morning and at 10pm and have Metamucil after lunch and after (early) dinner. That way I have mostly no urge at all until something like 4pm or 5pm. Whenever I start to eat anything at that time (usually even if I don't) I run and run to the bathroom 6 or 7 times in a row. What is worse: my urge situation is more or less unpredictable at any time after that, and at night I never sleep without 5-8 bathroom interruptions.

I am a pro musician, and every time I've had to perform or rehearse after 8pm (which is basically quite often) I was mostly unable to stand through it without heavy discomfort, sometimes even heavily painful urge in the middle of a concert.

Taking Metamucil and/or Imodium before shows helps a little, but usually I can only be fairly sure to stand through the show if I eat nothing (or very little) for lunch and if I am able to "empty" several times before the shows as well.

So most of the time I've been conducting either heavily hungry or in permanent painful urge or fear about this.

The same applies when I'm trying to visit a concert (in the audience). It's simply not possible to leave the auditorium several times during a classical concert. Several times I left before the intermission and missed most of the concert.

This can't be the way it's supposed to be. I don't see myself being unable to stand or sit through anything at evening time for the rest of my life. Of course, 9 months is still not such a long time, but I think that things should be better by now.

I have tried most things recommended here, but it seems that whenever I eat more than hardly nothing, my intestine goes wild at first chance in the evening, and won't calm down even if it would really be needed.

Any ideas? Colestyramine usually puts in a plug, but that way I'm running to the toilet constantly next morning until the usual afternoon chaos time. Opium tincture sometimes helps at night, but during the evening it just makes things worse, as the chaos is only slightly delayed (and then even worse).

I have noticed my performance quality decline due to the fear and painful urge on the podium. I don't think I can take this much longer.

Thanks for listening, any advice would be appreciated.

Tommok (Germany)

My primary question to you would be what the status of your rectum is. It seems that you are merely treating symptoms without addressing what your potential underlying problem likely is- chronic proctitis. This is common when IRA is done in the presence of UC. Sounds like you need proctoscopy for diagnostics and appropriate treatment if there is inflammation. This would mean either topical or oral UC medications, not just antidiarrheals and/or bulking agents.

Yes, you have given it enough time and you should be having better function by now. I forget, why did you have the IRA instead of the j-pouch, which is generally indicated in nearly all cases of UC requiring surgical treatment? It is possible that you may need to have your rectum removed and go for the j-pouch. But if you are not bleeding, conservative medical treatment may be adequate.

Jan

Hello Jan, thank you for answering!

I took the opportunity and did a little internet research on IRA, and looked into my surgery protocol as well.

It seems that usually with an IRA the rectum is left where it is. Yet, in my case the rectum was cut off 2cm above the anus! Which makes it an ileo-anastomosis rather than an ileo-rectal anastomosis.

My surgeon told me that things would improve and eventually be fine, and a scope recently showed no sign of inflammation on the remaining 2cms. The reason why they didn't do a JPouch was, according to the protocol, the blood vessel situation (my colon area must have been a very, very horrible mess at the time they did the surgery).

So, apart from having a permanent ileostomy installed, are there any other options, be it medical or surgical, that you can think of?

Thank you very much for your support,

Tommok
(Germany)

If I get your description correctly, what you had was a straight ileoanal anastomosis. The 2cm rectal cuff is the high end range for retained rectal cuff that is considered appropriate to retain good continency (typically 1-2cm).

Also, it sounds like you had issues with what is called mesenteric reach, precluding j-pouch formation. This is when the blood vessels of the mesentery (which supply the blood to the intestines) could not be freed up enough to reach deep into the pelvis without tension. If the j-pouch is constructed under tension, there is a high risk of leaks and serious infection.

Sometimes when a surgeon is faced with this dilema he opts for an s-pouch or w-pouch, which can reach to the anal anastomosis area better without tension. Either this was not possible for you, or the surgeon did not have this skill in his "bag of tricks."

By now you should have seen some major improvement in function, if it was going to happen, although things can continue to improve for several years. It all depends on how long you are willing to wait to find out. It looks like you have experimented with the various bowel slowers, but your primary problem is a lack of resevoir. If your rectum had been left, you would at least have that, but if it was diseased, it would not be much good.

The way I see it you have few options without surgery. You can revert to an end ileostomy, or a continent ileostomy if they are done in Germany, or get some other opinions from other surgeons who do s or w pouches.

There is a reason that the straight connection was virtually abandoned--it did not work very well, for reasons you now know.

Jan