Hello all,

Quick update. My husband had his first of two surgeries to remove his colon, rectum and create his J-Pouch January 30, 2018.

His surgeon felt he was not healing as well as he should and performed a surgical debridement on April 26, 2018

On June 26, 2018 he had surgery to remove the small area that refused to heal, pulled down some healthy tissue from the small intestines and attached this healthy tissue to what was left of his rectum in the hopes of getting things to heal.  This is where I left off.

My husband has since seen a second surgeon for a second opinion.  The surgeon ran a bunch of test to assess my husband's situation, determine where exactly he was and how to proceed.  The second surgeon told him that he needed to go back to his original surgeon.  Sounds to us like he doesn't want to touch my husband with a 10 foot pole.  

So to wrap it all up.  This past January was a year from his initial surgery.  He has given up on his surgeon(s) and has resigned himself to living with a bag for the rest of his life.  

Here is my question(s).  Do things need to be made more "permanent" like removing the J-Pouch or sewing things shut?   

On a positive note... We took our first vacation since his surgery and he even went snorkeling, 4-wheeling and had a blast (oops you can see his bag peeking out)!!!!!!!! 

Life goes on.....

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I am sorry that your husband has had poor results with his J pouch.  Although I did not opt to get an ileostomy when my J pouch needed to be removed, perhaps relating my experience would be helpful.  I had my J pouch for 30 years and had 3 operations.  Undoubtedly, those surgeries were a factor for creating numerous dense adhesions that made J pouch removal more difficult for my surgeon.  It is not an easy operation and some people find that it can take quite a while for their bottom to heal. I had no problems with this and no infections developed. I would not recommend leaving the J pouch in because future problems could develop with it.  Some people have had their anal sphincter retained with the thought that they may want to try another J pouch in the future.

Although many people have had good results with ileostomies and there have been improvements in the appliances, I decided to get a BCIR (very similar to a Kock pouch) based on the quality of life it offers. This procedure does not require having an exterior bag and avoids many of the issues that those with conventional ileostomies can have.  There is a high success rate with these procedures and they have a high degree of patient satisfaction.  There is considerable information about both of these procedures on the internet.  It is likely that neither of your doctors did not discuss alternatives to a conventional ileostomy.

I wrote an article for UOAA’s magazine “The Phoenix” entitled “Researching My Options” that you may find to be helpful.  It is available on the Quality Life Association’s web page (www.qla-ostomy.org)  under the news tab.  This web site has additional information about continent ileostomies.  Please feel free to send me a PM if I you have any additional questions.

Bill

First I'd say if you're doing fine with the bag you can stick to it for sometime. People live with unconnected pouch for very long time. There's a minimum period to let it heal but no maximum for it. The poop and mucus may sometime leak through into the pouch making him want to use the bathroom to get it out. When they seal it they completely remove the pouch and shut the anus never to be used again. Ask some expert and give it another year to heal. There are some advanced procedures like BCIR which don't need a bag. His body's been through much so its fine if he doesnt want to get another surgery for sometime.

BillV posted:

I am sorry that your husband has had poor results with his J pouch.  Although I did not opt to get an ileostomy when my J pouch needed to be removed, perhaps relating my experience would be helpful.  I had my J pouch for 30 years and had 3 operations.  Undoubtedly, those surgeries were a factor for creating numerous dense adhesions that made J pouch removal more difficult for my surgeon.  It is not an easy operation and some people find that it can take quite a while for their bottom to heal. I had no problems with this and no infections developed. I would not recommend leaving the J pouch in because future problems could develop with it.  Some people have had their anal sphincter retained with the thought that they may want to try another J pouch in the future.

Although many people have had good results with ileostomies and there have been improvements in the appliances, I decided to get a BCIR (very similar to a Kock pouch) based on the quality of life it offers. This procedure does not require having an exterior bag and avoids many of the issues that those with conventional ileostomies can have.  There is a high success rate with these procedures and they have a high degree of patient satisfaction.  There is considerable information about both of these procedures on the internet.  It is likely that neither of your doctors did not discuss alternatives to a conventional ileostomy.

I wrote an article for UOAA’s magazine “The Phoenix” entitled “Researching My Options” that you may find to be helpful.  It is available on the Quality Life Association’s web page (www.qla-ostomy.org)  under the news tab.  This web site has additional information about continent ileostomies.  Please feel free to send me a PM if I you have any additional questions.

Bill

Hi Bill

Thanks for the your reply.  We will have to have a look at that article.  

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