How could you have *no* cuff?  Some rectal ring has to be kept to attach the pouch to.

What is your diet like/what are you eating? 

You actually can get pouchitis at any time, even when diverted or immediately after surgery. If nothing is working, and you exhaust all the things to slow stuff down, I wouldn't think it crazy to try a round of Flagyl or Cipro. (I see you do have Cipro to try.)

Am eating sensibly as advised. Lots of white bread, potatoes, rice, peanut butter or cream cheese sandwiches, sometimes yogurt, eggs, and soft meat, that kind of thing.

As for the cuff issue, I'm just repeating what the surgeon told me. I know that my case was "interesting" (something you never want to be in a medical context), given how low down the tumor was, so they probably leave barely anything there and strip it, lowering the chances of cuffitis to something like 5% apparently.

Pink or bright red blood? Pressure, pain, gas? I am 12 weeks post takedown down and have had presumed pouchitis every month. So, is this worse or better then a month ago.  That is pouchitis three times for me....fear not the cipro! Have you been scoped?

I can't speak of your bleeding issue but if I eat too much white bread it makes me go to the bathroom A LOT. When I cut it back I'm fine. You said you eat  a lot of white bread. 

Not that much bread, but will maybe see what happens if I cut it out.

Not been scoped. If the metamucil and the cipro don't work, then he'll scope.

Your diet may not matter much, but if it does it will need a lot more careful experimentation. The word "sensible" is misleading here - what matters it what seems to work best for you. Not everyone thrives on the fairly high level of carbohydrates you're eating.

 

That's an awful lot of bowel slowers. Are you sure they're doing you any good? At that dose of opium + Lomotil you've more than maxed out that benefit, I think.

 

In my early months I was encouraged to "stretch the pouch." This involved delaying bathroom trips a bit even when going immediately would have been more comfortable. Are you able to hold it a bit, or will you promptly have an accident? If you can't hold it, one thing you can do is many, many kegels, to tone up the anal sphincter. If you really have no rectal cuff then you may have had a hand-sewn procedure, and the risk of incontinence is higher with such a procedure. Your sphincter is your last line of defense.

 

If stool is coming out too liquid then a thickener should help, making your sphincter's job easier. Psyllium (Metamucil or Konsyl) works for me, but others get better results from Benefiber or Citrucel. 

 

Cipro is probably worth a try. The good news is that it usually works surprisingly quickly if it's going to work - a day or two.

 

Don't make too many changes at once, or you won't know what probably caused whatever effect you see. Good luck!

If I was guessing and I am, I would guess you probably have several things going on. You should get scoped to see if it is pouchitis and or a mechanical issue such as a stricture, surgical issue or something else.  It sounds like the surgeon had difficulties and these J pouches need to be constructed properly to work correctly.  I would guess the radiation is  a factor and the more or less direct connect to the anus, both of these can be problematic for good function. 

 

Not to discourage you but our case histories are very similar though I am older, UC 25 years, rectal cancer, chemo radiation, J pouch surgical difficulties. Your problems seem worse than mine were, too early for you but I eventually went back to an end ileo.  Tincture of Opium really did help me and at what seems a lower dose, .6 ml. ( are you sure you have the dose right?) Get the scope and see what is going on, good luck

Thanks for all the responses on this.

I'm from the UK originally and came to NY 8 years ago, so I'm still a bit English in the "don't make a fuss" and "stiff upper lip" sense. I realize that it's still relatively early days, so don't want to panic too early or anything, but I just get the feeling that with everything I'm taking, I should be seeing some sort of small improvement by now.

If the metamucil and cipro don't work, I'll go for the scope.