slipped valve k pouch

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maisymc
New Member


Date Joined Jan 2011
Total Posts : 2
   Posted 1/11/2011 7:13 PM (GMT -6)   
hi, im new here and was hoping to get some info on what a slipped valve of a k pouch op entails, I got my k pouch about 8 months ago, had a lot of complications, which was more to do with adhesions etc..... (having had several surgeries), i was able to intubate fine for about 4 months then it became increasingly difficult, ended up being hospitalised many times. At the moment i have my tube taped in every night and some days, the longer i leave the tube out the harder it is to intubate. My surgeon says i will probably need surgery but i have other health issues and dont feel i could cope with another surgery so soon, iv been unlucky and caught a virus while trying to recouperate from the surgery and have caught every bug, flu anything thats going and feel extremely weak at the moment. Iv been told it is a big surgery but my dr did not go into much detail. I cant go on like this indefinately but the thought of another surgery while im feeling so exhausted i cant even contemplate. I usually always see the positive in situations, 2010 was a tough year, so things can only get better. Anybody with any info on this procedure or just advice or thoughts would be greatly appreciated.
Thanks
maisy

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/11/2011 7:47 PM (GMT -6)   
I'm not sure we have any k-pouchers on this site but there is a very active k-pouch discussion board on www.j-pouch.org There are a lot of very long term 20-35 year pouchers on that site who would be able to answer your question.

Sue

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/11/2011 11:39 PM (GMT -6)   
Maisy,

Lizzie has had horrific issues and complications and is still having them. She had the K-pouch and the slipped valve and the adhesions. They tried to fix the K pouch valve one or two times but she ended up going with the ileostomy after all that. Then there were issues and she needed it redone and is in a big mess with adhesions and more issues. You may want to consider just going right to an ileostomy and forgetting about the internal pouches as there are apt to be issues with those. Plus each time you have surgery, you form more adhesions. Feel for you big time. I have an ileostomy and so far no problems. I travel everywhere. I was seriously injured during a surgery, that is how I ended up with an ileostomy. I also had adhesions very seriously and they used Seprafilm. So far so good, but one never knows. Am in the fingers crossed club for life. Hence all the travel.

Good luck, Rosemary

PS look under the total colectomy threads and you will find postings by Allie, a friend of Lizzie's, go back some pages and you will see her story.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/12/2011 9:12 AM (GMT -6)   
There are thousands of k-pouchers who are doing just fine. Don't let one person's failed experience guide you to make any rash decisions.

Sue

maisymc
New Member


Date Joined Jan 2011
Total Posts : 2
   Posted 1/12/2011 12:14 PM (GMT -6)   
Thanks, Sue and Rosemary, my fear is another surgery leading to more complications (having already had many surgeries through the years), i had a j pouch for many years tried to perservere but it failed miserably in the end and had my 2rd ileostomy which i was able to live a good life with apart from leaks etc...... when it was time for the removal of the j pouch i was offered the k pouch which sounded ideal, anyway the rest is history, it was a horrendous attempt at a recovery. I see my surgeon at the end of january and will hopefully feel more confident on the right way to proceed. I will check out the other posts and fingers crossed for you Rosemary x thanks sue for your advice x
Maisy.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/12/2011 5:26 PM (GMT -6)   
Maisy,

Yes, it is true don't let one person's bad experience dictate what you should do, I do agree. BUT, on the other hand, that is what these boards are all about, so that you can read of the vast range of experiences with the goal being to role all this input together and make the best decision you can for yourself. It's tricky. Wish you well, Rosemary
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