Lomotil/Imodium

Was it Benefiber by chance?

How much anti-diarrheal have you taken?

I don't have any advise for you as I don't have a j-pouch yet.

Hi AngieB. Could you clarify what you mean by anal pressure and cramping? Does it feel as though you aren't emptying your pouch? Like you have to go even though you just finished? 

Hi AIMC no it’s pain and pressure on the anus followed be cramping in the lower abdomen.

Yes it was benefiber

This sounds like pouchitis. In my case most antibiotics failed completely - only Cipro worked. Which antibiotics have you tried?

Hi Scott Cipro 500 mg I actually have a new rx I have not taken.

I’ve had Pouchitis before and took Cipro . I refilled it just in case but the anal pressure and pain didn’t think could be Pouchitis.

Are you having the pressure and pain all the time, or just when there’s something in the pouch to empty?

The pressure and pain comes and then I have to empty and this goes on about 3 times before it stops

Sorry it’s everyday 

Hi. Sorry to hear of your troubles. Here are a few ideas:

- If it's pouchitis that didn't resolve with Cipro, you could try the VSL3 probiotic powder and also using Rowasa enemas. That worked for me when I had mild pouchitis. (I can't take Cipro because I get such bad side effects.)

- Metamucil has a fiber cookie that is both tasty and, I think, more effective than the powder. At least, it is for me. The chocolate flavor ones are great.

- Going cold turkey off immodium if you've been taking it for years, like some of us, can actually cause you to go through some mild withdrawal symptoms. It's odd but no doctor I've spoken with knows about it but I've found tales of it online and I definitely accidentally put myself through it. So taper off, if you've been on it for a while.

- The pain/pressure-- I get this too sometimes though it's not bad. In the beginning after my take down it was unbearable. I actually went to get acupuncture to help treat the nerves of my coccyx area. It helped a lot. But it wasn't pouchitis then; it was something having to do with the surgery recovery, I'm pretty sure.

- I had some leakage in the first year and it's gradually got better and stopped. Things really do continue to get better even after the first year. Hang in there.

avoiding sugar and carbs completely has done it for me.  I take one lomotil every other day and have been good on this regimen. 

Sugar I understand but why no carbs? I don't poop with my J-pouch yet but I find potatoes, bread, pasta and rice is the best stool thickener. What else is there? Vegetables, meat? I know for me I can't digest veggies at all. 

For some people carbs promote pouchitis (I haven’t noticed this effect). Starchy carbs digest directly to sugars, so they are nutritionally nearly identical, though some starches increase blood sugar a bit more slowly. The mechanical (stool thickening) effect is also a factor, though I prefer to handle that independently with psyllium.

Yes, meat and veggies, cheese.  I pretty much do a keto lifestyle.  I also have celiac so have been gluten free for 15 years.  The gf products added 50 pounds to my small frame, so I needed to lose weight as well.  I do fine with this eating pattern, most of the time.  All carbs turn to sugar which is highly inflammatory.  I know they tell you the pastas, rices, breads are easily digestible and help with the pouch, and for some people that may be true, but I have not had pouchitis since stopping all carbs.