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Possible pouchitis? Been in hospital since Sunday after dehydration from a day of diarrhea (& some vomiting as it progressed). Kidneys functioning again properly now from 9 bags of fluid. After being better for over a day and eating (with more formed output) I had breakfast yesterday and had stomach pains from then on and back to just water stool. I have an unsettled scratchy pain in lower tummy (guessing it's pouch!) feel a little sick and gassy. I'm in a small hospital with no experience of pouches, with my surgeon 1.5 hours away. Does it sound like pouchitis, or still cuffitis? (Diagnosed with cuffitis last April, and had unexplained sick feeling for months now, but pouch been ok except for some straining... but not had pouchitis before and had pouch 10 years). Is it best to get myself to a bigger hospital, since so far they have said it is a virus/food poisoning and not even considered pouch. Was in isolation but now been put on a bowel ward... Just concerned about whether small hospitals can treat this as effectively, as not sure whether to let them check pouch with camera if not done it before. 

I have an appointment next Thursday with a pouch clinic where my surgeon is, so could discharge myself if I can keep liquids down to then and just put up with the constant pain. Just worried it could be something more serious... And can't do another 9 hour wait in A&E for a drip! 

Can an they treat pouchitis without checking first with camera, just as a way of finding out if it is that? 

When my body gets Ill it does it very quickly, so is making me anxious!! 

Thank you for reading and for any thoughts anyone has! 

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If I'm reading correctly: Since this (mostly) came on quickly and hasn't (yet) lasted very long, I'd bet on some sort of GI infection - it could be viral, bacterial, or parasitic. I'd be surprised if it were basic pouchitis. Have you been tested for C. Diff? Salmonella? Giardiasis? Shigella? The good news is that any hospital will have plenty of experience with these kinds of things, since they aren't pouch-specific.

I'm glad your kidneys are okay. That's the biggest risk with dehydration (other than hitting your head lethally while fainting).

Scott F

Thanks so much Scott. It is day 5 so yes, early days. I've been worried that the untreated cuffitis and/or undiagnosed symptoms I had  triggered this, as have felt sick many days since January and had the same pain I now have lower down in body, which is an itchy/burning feeling. As well as the initial arthritis that was triggered in December that still flares up, every week or two. 

It was a bit of a shock to find my kidneys failing to do their thing after just a day of loose stool! So am certainly glad that they sorted that for me!  Still waiting for stool sample results, c diff was checked for again today, so will have to see what tomorrow brings. 

Thanks again, it's reassuring to ask people who have felt these symptoms rather than for me to read textbook info... I'm one of those who struggle to fall under text book criteria sometimes I'll let you know when I solve the mystery! X

 

J

Jane, it also sounds like you might be a bit dehydrated most of the time. If you're not peeing light-colored fluid 3-4 times daily then you need better/more hydration.

The more chronic discomfort probably is your cuffitis. Best to get that under control, after this storm has passed. Is it being treated properly, do you think?

Scott F

Thanks again Scott! Not really had much treatment, as had (10 days I think it was) of pred suppositories when it was found, by the person who did the scope. But not been able to get hold of anyone to help since, so just been waiting it out till I have a pouch appointment next week. This hospital haven't managed to get hold of them for my notes yet either! Been finding it quite frustrating! Still on the list for scope here by a more experienced person (but no mention of having checked pouches before), but won't be till Monday at earliest! So I need to practise being a patient patient over a weekend like the old days!

Being on sulfasalazine makes it difficult to know what colour urine is, which doesn't help! Xxx

J

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