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Hello..I'm new to this site.

So..i really need as many opinions as possible cuz I will loose my mind.

Sorry for my bad english, its not my first language..

So..I have a loop ileostomy and a j-pouch created for over a year now.

 I also have mild cuffitis which I can't get rid of..

My question is: Is it normal to have watery leaks every day or I have this because of my cuffitis? I know it's normal to pass mucus from time to time but I pass few spoons of clear  water at least 5 times a day. So it looks like clear water, not mucus. Has anyone experienced that? Should i be worried? Cuz I am, and i have to wear pads all the time. I have couple of friends who said they would only pass mucus on the toilet once or twice a week so I think this is not normal. What do you think?

Also, if I am taking a bath or swim, later on when I get out of the water I must expell much more water than usual..Like its getting inside. I know this is weird, but its like that every single time! Any opinions?

TIA!

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I had chronic cuffitis and didn't have the water problem. It appears as you have several problems going on. I don't know how experienced your doctor is and don't mean to offend but maybe it is time for you to go to a j-pouch/IBD specialist.  My local GI referred me to the Mayo Clinic when my cuffitis wouldn't go away under conventional treatment. He said he was a generalist and I needed a specialist.

Do you live in the U.S.A.? I ask because there are 3 Mayo Clinics and 3 Cleveland Clinics in the U.S. There are more specialists out there but I know these 6 will all have them.  I don't recall anyone else on here passing so much water like you are.  It doesn't sound right :-( 

TE Marie

Thanks you for your answers and will to help..

I Iive in a small european country so we have just one pouch specialist and therefore I came here for advice. I feel he isnt sure whats going on, the pouchoscopy shows cuffitis..

I have a feeling that you havent read that I have an unconnected pouch and ileostomy, so I didnt have my takedown yet.

The water is coming from my bum/pouch that is not connected yet.. I know this is somewhat normal but it has been coming in very large ammount lately..my surgeon said it would be normal if two spoons of water came out daily.. 

 

Adelle007
Last edited by Adelle007

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