Leaky Valve ?

Welcome to the group, and good luck with your scope.

Hi Aggie,
Welcome to the group...I hope that we will be able to help you in any way that we can...there is a wealth of knowlege, experience and love in this group.
Sharon

I see & feel this and thank you all.

Hi Aggie,
Just wondering how you managed to deal with leakage for 18 years? What did you use as a dressing to sop up the leakage? - Dixie

Hi Dixie,
It is pretty much like Russian Roulette, not constant & usually predictable. If I eat something I better be near a bathroom and what I eat make a big difference too. Also if I go too long without eating I leak a yellish bubbly empty stomach juices. I wear a piece of a Kotex Panti Liner cut into thirds - on top of that I put a cotton square (sold to remove makeup) - on top of that I fold 2 sheets of toilet pater and cover it all with double pieces of 3 inch paper tape. "Most" leaks never get through to my clothes because I can feel the leak happening and all this coverage gives me time to make my bathroom run. I carry an empty 16 once water bottle in my purse to use as a portable sink to clean my catheter if I need to use a public bathroom stall and carry baggies for soiled stuff too. Great name for a Soap Opera "The Edge of Wetness". Needless to say, I go very often - never miss a bathroom, is my motto.

Hi, I am new to this site. I was diagnosed with UC in 1996 when I was just 20 years old and began a multitude of surgeries. I had a colostomy and then and ileostomy and I had the Kock Pouch surgery in 2002 at the age of 27. It is the best thing that has happened to me. I have been experiencing some leakage and also having trouble with inserting my catheter. Most days I do well, but it seems here lately that I am having to empty my pouch more than enough times throughout the day. I am at a loss as to what to do. I am going to see a new GI doctor next week, I am hoping to get this resolved. Any thoughts?

Jennifer

Welcome to our corner. I have been having the same problem as you have for a long time too. I finally feel I have found the right doctors and will be going in for repairs in 2 weeks. My first thought for you is to make sure your GI knows how to scope a pouch and knows what to look for. My surgeon in NYC only recommended 2 doctors & I was amazed how different it was with a doctor with experience with K Pouches. This is where you will find out the cause of the leakage.

quote:

It is pretty much like Russian Roulette,

Aggie, What a great way to phrase it! I've had my kock pouch since 1983. I had a little leaking pretty early on but learned to live with it because in the early years it just wasn't to bad. It has been getting worse and worse over the last couple of years. At home I use a bounty paper towel folded and a small piece of thin plastic about 4 x 4" and like you, I know when I leak and can rush to the bathroom but I don't leave home without a stoma cap on. Leakage can be so bad sometimes that even the stoma cap adhesive fails. I finally saw a surgeon and he eliminated pouchitis and recommended Dr. Schiller in Los Angeles.

I'm curious what kind of repair you are having and hope you will report back on how things go. Dr. Schiller has recommended a valve revision & he uses the BCIR valve. If I decide to go with a valve revision it won't be until summer.

I had my pouch revision on Feb. 19, by Dr. Bauer at Mt. Sini in NYC. He redid my valve because it was slipped and enlarged my pouch. Also had my both ovaries & tubes removed at the same time. Still recuperating. Not a simple procedure.

Aggie,

Thanks for getting back to me. Hope you have a full recovery soon.