Pouchitis for a change

I'm sorry you are going through this especially with Christmas here.  You could try and see if your GI can get you either a stronger antibiotic to try and knock the pouchitis out or you could get a combination approach with Flagel and Cipro.  I know that works for some people, but for me the Flagel makes me nauseated. You might also want to discuss with him/her the idea of a biologic to keep the pouchitis at bay. Entyvio has helped me a lot.

Hopefully you can get something called in yet today to get some relief. Wish I had a magic wand to make it all go away!!

Thanks, Still Standing. I took Flagyl many years ago and was nauseated as well, so no go with that one. I'm on Remicade and have been for about 5 years. Maybe it's time to try something else, I might suggest it to him.

Probiotics, Visbiome or vsl3. I couldn't get off antibiotics, eventually I started on vsl3 and moved to Visbiome and taking one packet a day usually keeps me of antibiotics. Occasionally I need to get back on antibiotics but often enough I can tell that something is off and I take probiotics twice a day for a week and I don't need the antibiotics.

Also maybe Cipro is not enough, I always get that and flygal. The way my GI talks I'm surprised everyone doesn't just use both to make sure.

Never heard of Visbiome....I'll have to check that out. I've tried medical cannabis and it doesn't do a thing for me. Thanks for the info.

Sorry to hear that. I’ve heard of people being on low diesel antibiotics for long periods of time bc they just can’t kick the inflammation. I hope that won’t be the case with you. I’d say call and see if they can put u on something else like the others suggested. 

I would like to know what are the symptoms of Pouchitis. I’ve only had it once but wonder whether I have had it before and not known. I haven’t always felt that well and have just put it down to having a j pouche. Would appreciate your comment on this??

ps. I have had the j pouche for just on 5 years. 

For me it is bleeding and diarrhea, so that I can't leave my house. My anus gets so sore that I can barely touch it but I think that my stricture seems to open and that's what makes  it super sore. Other people say that they get a temp and feel achy. Maybe someone else can add to this.

I feel extra gassy, not sleeping well due to gut discomfort, some blood but not all the time, being exhausted from nothing. It's taken multiple times of me not knowing I have had pouchitis, to start figuring out what to look for in myself. My partner often notices before I do.

For me pouchitis causes urgency, greater frequency, and leakage (especially at night). 

Come to think of it, I'm gassy as well....I sometimes have  night time leakage even when I'm on antibiotics, but more so when I'm not. I'm wondering if I should speak to my doctor about being on another biologic...right now I'm on Remicade and it looks like I'm going to have to be on antibiotics for the rest of my life.

Thankyou for all your replies. I think for me I feel generally unwell, gassy, some leakage during the night, bilious and have a bit of a temperature. And also I feel like I feel like I need to urinate a lot because of pressure on my bladder. Does anyone else feel like that??

Also I have really bad problems with insomnia??  Not sure how this is connected to pouchitis maybe it isn’t?

Funny, you mention that you need to urinate a lot, and that you have insomnia....I have both, but don't think that it's pouch related....Scott, what do you think??

I wouldn't say that they are necessarily connected. I never need to pee when I have pouchitis, I wouldn't expect it to be much different for you. When you are flaring with pouchitis you are more likely sending any extra water you have out with a bowel movement. Pouchitis is also likely to cause your body to actually absorb less water, so having to urinate more means you are dehydrating more. It's only when I have been on antibiotics(after a flare) that I start needing to pee without a bowel movement. I don't know if that is slightly different for women and men?

Insomnia is more likely, although it's probably more of a by product of feeling unwell and just not being able to sleep or worrying about your health so you aren't sleeping.

I don’t think pouchitis directly increases urination for most of us. Some of us choose to urinate every time we have a bowel movement, and pouchitis certainly increases the frequency of those. Sometimes the sensation of fullness in the pouch can be associated with a sensation of fullness in the bladder (or vice-versa). And sometimes our water drinking habits will change when other things are going on with our bodies. Our bodies will each have unique (and sometimes confusing) ways of delivering these messages to us.

Thankyou for all your replies. I can relate to most of them and a lot of  your replies are good to hear. Things that a doctor would never tell you or wouldn’t know. I’ll have to work on my bladder probs. Never had an issue with UTIs until bowel surgery. Somehow I feel there might be some link between the two. I’ll write a check list for what you all have offered as being symptoms for Pouchitis and keep an eye on myself.  Cheers Francesca 🌷