Hey all. I had my j-pouch surgery in September this year. The first month was a nightmare of pretty much going to the toilet at least once every two hours.
However, after seven weeks I was in much better shape. Amazingly my stool was nearly always well formed - not far off normal stools and rarely causing me issues in passsing. There was some issues with gas and some nights were a lot worse than others. But i was taking no more than 3 immodium a day and sometimes just one. Doctors agreed i was doing great.
However... 2 weeks ago i had terrible diarrhoea for the best part of two days and since then i have had no more hard stools. Everything is like my old stoma discharge and often its very diarrhoea-ey. I have episodes where i really need to dash to the loo - sometimes three or four times in a hour. The acid is destroying my bum too.
I am not eating or drinking anything different.
Has anyone else had a similar experience, particularly with the change of consistency in stool? Did it ever come back to formed or formed-ish as its killing me how it is atm.
I feel like i have gone backwards so quickly having had such a good start.
Not being able to enjoy a day out as im not sure if an episode will strike is very sad for me. And yes, i know it's early days. Hoping for some light.
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There’s a good chance that you just picked up a GI virus or food poisoning. It can take us J-pouchers longer to recover from these things. Other possibilities include pouchitis or a more significant GI infection (C. diff, giardia, salmonella, shigella, amebiasis,...). I hope you feel better soon!
Possibly the start of pouchitis? It can be hard for your gut to recover from viruses etc, and then develop pouchitis. I hope not for your sake.
Thanks for the replies. My first thought was an infection but apart from the diarrhoea i feel ok.
And i did a lot of reading about pouchitis. This may seem silly but if i had it would i know i had it? I mean would i feel so bad or be so bad that i would know something is wrong?
I have seen typical symptoms and perhaps i could argue i have one or two but im just not sure. How can anyone diagnose it 100%?
Thanks again
Pouchitis is sometimes diagnosed by symptoms, but a pouchoscopy with biopsies is somewhat more reliable. I’m not sure what you believe pouchitis feels like, but for many of us it’s just urgency and leakage.
Thanks Scott. Sorry for all the questions. I have googled this but can't get an answer. Can pouchitis go away on its own or must it be treated with anti-biotics?
We’ve had a few people claim to get pouchitis to go away without antibiotics, but I think it requires a course of antibiotics (usually 10-14 days) in the vast majority of cases. It’s important to rule out an infection first.
I didn't know that I had pouchitis for approximately 2 years, at least that is what my Dr thinks as I only started seeing him when I went to emerg with a bowel obstruction. I have found some luck in keeping pouchitis away with probiotics, but I often miss my symptoms and end up taking a course of antibiotics, flagyl and Cipro.
I don't always have increased output or notice a change in consistency. I usually get more gas and trouble sleeping, longer visits to the toilet.