Hi guys...bumping this up bc I am a bit concerned about my symptoms. After 13 years of undiagnosed pouchitis, this is the first time I've been in remission. Therefore, I'm not very good yet at knowing when it might be creeping up on me again.

As of now, the itch seems to have stopped but my stomach is soooo distended. I have no idea why and it isn't excessive gas.

I do have a scope on Wednesday but my GI is short on words (tho technically very good) so any thoughts would be appreciated before I see her.

Thanks!

Just a couple of thoughts, far from complete:
1) That's a lot of simethicone. Consider the possibility that it might be more than optimal.
2) If you try to get rid of all the gas you will be disappointed.
3) Butt itch is sometimes a fungal infection (athlete's butt?).
4) Probiotics (like VSL) can help maintain remission from pouchitis.
5) Don't panic when you have sensations/sounds from your innards. Most of them are not harbingers of pouchitis.

Others may be able to contribute more...

I can identify with you so much as my stool has been too thick lately and I also have a distended belly. I know how you must feel because this "fullness" is really uncomfortable for me. The comment that the iron you take might be constipating seems like something to further explore. I think an opiate I take for pain management unrelated to the pouch may be the culprit for me. We pouchers have to be cautious about everything that goes in so think carefully about what you are eating. I use GasX for gas control and it seems to help quite a bit.
Savannah from Mpls.
UC and ruptured colon 2009
Total colectomy with illeostomy 2009
Two stage reversal 2010

Distention is usually from gas or obstruction. It does not sound like you are terribly obstructed, or you would be in more discomfort. Simethicone is pretty much the only OTC treatment for gas there is. It comes in many brands, but the active ingredient is always simethicone. It it not particularly effective for serious gas problems in my experience or knowledge base. It mostly just helps it move along so it can be expelled. It does not make it disappear.

Gas is best prevented rather than treated. This is where you may have heard about other products, such as Beano or digestive enzymes. They prevent gas by having the food more completely digested, leaving less for the bacteria to work on and create gas as a byproduct (primary source of gas). I would get terrible gas from psyllium fiber supplements (like Metamucil). All fiber supplements are a type of carbohydrate that is not digested and absorbed. Some are pretty much inert, like methylcellulose (Citrucel), while others, like psyllium are slightly purgative to some and gas forming. So something to think about if you are using fiber supplements.

Another option is to drastically reduce your carbohydrate intake and/or take probiotics for maintenance (but gas may be worse at first). Many people see a significant difference by reducing carbs, especially sugars and processed starches.

While all of this could possibly mean a return of your pouchitis, I would try these other methods of gas control before going on antibiotics again. But, I can tell you, when I have pouchitis, taking Flagyl completely shuts off the gas for me, telling me it is really true that it is all bacterial byproduct.

Jan

Thanks, guys. I'm still at a loss. I am and have been since March virtually carb free. I've known for years that's key for me, but didn't know it was key toward fighting pouchitis until I found this forum at the beginning of the year. So I don't let a single carb pass my lips now!

I take Culturelle (ins won't cover VSL...been round that one many times). I don't take fiber supplements bc I already know my system HATES them.

I really don't feel gassy or obstructed....just distended. It's a little uncomfy but mostly looks like I am carrying a beach ball. Not attractive.

Is this new? Maybe you have a big incisional (ventral) hernia? It can enlarge over time. Just a thought, since you do not believe you have gas distention or obstruction.

Jan

Ugh, I hope you are wrong Jan! lol. I guess I'll learn more at Wednesday's scope.

Be sure to have her take a look at your belly while standing up and laying down. I know that when you go in for a scope, you are laying down with just your butt hanging out by the time the doc comes in. So, an exam of your abdomen may not be on the menu unless you point out the issue.

Jan