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4 replies

3 months since takedown bm's still 20+

B BustingMember
It's been 3 months since my takedown and I'm still going to the bathroom 20 or more times a day. What the heck is going on? My dr. Keeps telling me it will get better but it doesn't seem to be doing so. I've been taking Metamucil powder and wafers, lomotil, eating what my doctor told my like apple sauce, rice, bananas, and toast. I even switched to lactaid milk cause regular gives me problems. It seems like nothing seems to work, I mean it helps but does not work.

Does anyone know when this will get better? Has anyone had these problems? Everyone seems to be doing why better than I am. This is making me so miserable I'm considering going back to a ileostomy bag and just giving up. I'm sick of putting hydrocortisone on my behind and changing my underwear 3 times a day, and running to the bathroom.

I've already went to the hospital cause of dehydration and they ran test like stool samples, ct scan, blood work, and urine test. They told me everything is fine and nothing is wrong with my j pouch. So I'm wondering what is really going on here. Someone please give me advice or word of experience of what's going on and what you would do. Thanks
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SpookySpookyMember
Hi Busting,

Sorry to hear you are having such a rough time. I know you don't want to hear it, but you are still very early post takedown, and at least some of what you're experiencing may still simply be your body's adjustment to the pouch; this will improve with time, though it can take up to a year or two for some people. That being said, I am wondering about the possibility of pouchitis. Has this been discussed with you? You may also have a spasmodic pouch, particularly if you notice you are going to the washroom more frequently shortly after eating. This is also common post takedown and usually resolves with time. But, in the meantime, you might need an antispasmodic like bentyl, which can help slow things down and reduce frequency. Finally, I see you are taking lomotil, but have you tried imodium? Some people have more success with one over another. Some take both, but these are all things to discuss with your doctor. I hope it gets better for you soon!
P PolypsAplentyMember
Sorry to hear about what you're going through Busting. I'm about the same amount of time out from my take down as you - know it definitely gets rough. I don't think 20+ times is normal for three months out. I was at 20+ times one month out, and my surgeon/surgical team told me that was not normal and basically trouble-shot it with metamucil/immodium (I don't have UC though, so maybe it's different.)

I don't have a ton of ideas, but for metamucil, are you taking it 1 tbsp per four ounces of water after your first and last meal? This is what they told me to do, and it's not the same dosage as the box says. It's less water than on the box, which will make you thicker. Also, sugar free metamucil is better because sugar will make you more liquid, which will make you go more. Finally, after taking the metamucil, I'd avoid drinking water for an hour because it'll lessen the effect. Never taken lotomil, so I don't know much about that (only on immodium so far.) Sorry I don't have a ton of advice, but that's where I'd start besides asking your doctors what they thought (which you've already done.)
B BustingMember
Thank you for the reply, I also don't have uc, I actually have colon cancer, or had, I'm in remmission right now. I've had radiation therapy and chemotherapy, so maybe that may be what's complicating things. I don't know for sure. I am takeing a heaping tablespoon of Metamucil 3 times a day, not with only 4 ounces of water though and I've been drinking after taking it. In going to try that tomorrow and see what happens. I'm going to research this spasmodic pouch as well. Thanks for the advice, anything helps cause I'm new to all this and still learning about the j pouch.
Holly MHolly MMember
My recovery has taken a full year. 3 months out and I was still going about 20 times myself. I still go about 10 times a day now but it is more controllable and it may just be my normal. I do take the probiotic VSL#3DS, I think that helps alot. I used to take imodium and chew gas x tablets like crazy. Now off everything but the VSL. I did a couple of rounds of cipro and a round of flagyl a few months back and that helped. But I would say 3 mths out is still very early. It will get better, try and focus on one day at a time for now I know that is hard. I too thought about going back to an ostomy many times. Just keep drinking your water , chew your food really good, keep your tush clean after each bm (a bidet is awesome) & I have found using baby powder with corn starch has helped me more than the ointments because it keeps the area dry. Keep us posted and I hope this helps.

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