Surgery to remove J Pouch

Leanne, you are taking the right approach by looking into a second opinion.  The choice you make will have a significant affect on your quality of life.  It would be great if you cold get your J pouch to function well, so a consult with a surgeon who is well-experienced in dealing with J pouch problems is in order.  According to your earlier post, an end ileostomy with several options regarding the pouch were the only options presented to you.  Two other options that do not require having an external bag are the K pouch and the BCIR.  It is my understanding that there are 2 surgeons in Canada who do the K pouch.

I had to have my 30 year J pouch removed for medical reasons and opted to get a BCIR because I strongly did not want an end ileostomy.  I have had excellent results with it since my surgery 7 years ago.  Since my surgery, I have become very active in the continent ileostomy community and am a columnist in UOAA’s magazine. “The Phoenix”. One of my articles is entitled, “Researching My Options” which can be viewed at: https://j7d.873.myftpupload.co...chingMyOptions-1.pdf. .  This article is also available on the website of the Quality Life Association (www.qla-ostomy.org).  This website contains additional information about the BCIR procedure as well as a list of surgeons who perform continent ileostomies, including 2 in Canada.  I would be pleased to provide more information if you are interested.  Just send me a PM.  Bill

@Leann posted:

Not a lot more  information. I am getting a copy of the report... I walked out of the office without it.   I think I was disappointed and processing it all. But I will post when I have the correct wording. However he is referring me to another surgeon for another opinion. So that is great.

I am sorry to hear that! I understand your frustration, I hope everything ends well in the end. I hope he refers you to the right surgeon. Do you have any idea what you might want to choose? Is a permanent ileostomy sounding more appealing??? 

@BillV posted:

Leanne, you are taking the right approach by looking into a second opinion.  The choice you make will have a significant affect on your quality of life.  It would be great if you cold get your J pouch to function well, so a consult with a surgeon who is well-experienced in dealing with J pouch problems is in order.  According to your earlier post, an end ileostomy with several options regarding the pouch were the only options presented to you.  Two other options that do not require having an external bag are the K pouch and the BCIR.  It is my understanding that there are 2 surgeons in Canada who do the K pouch.

I had to have my 30 year J pouch removed for medical reasons and opted to get a BCIR because I strongly did not want an end ileostomy.  I have had excellent results with it since my surgery 7 years ago.  Since my surgery, I have become very active in the continent ileostomy community and am a columnist in UOAA’s magazine. “The Phoenix”. One of my articles is entitled, “Researching My Options” which can be viewed at: https://j7d.873.myftpupload.co...chingMyOptions-1.pdf. .  This article is also available on the website of the Quality Life Association (www.qla-ostomy.org).  This website contains additional information about the BCIR procedure as well as a list of surgeons who perform continent ileostomies, including 2 in Canada.  I would be pleased to provide more information if you are interested.  Just send me a PM.  Bill

I see you are very resilient!!! I would have probably gotten the ileostomy but I totally understand your choice! I am glad the K-pouch is working

What made your J-pouch fail after 30 years??? I never heard of that before after that long time

Lauren, I had recurrent high grade dysplasia and a malignant polyp next to the anal sphincter.  Surgery to remove the polyp eliminated the cancer, but significantly weakened the sphincter.

@BillV posted:

Lauren, I had recurrent high grade dysplasia and a malignant polyp next to the anal sphincter.  Surgery to remove the polyp eliminated the cancer, but significantly weakened the sphincter.

Oh my goodness! I am sorry to hear that! Thanks for sharing

Are you more happier with the K-pouch over the ileostomy/J-pouch???

I would definitely get a second opinion before making a decision!!!! I have a lot of confidence in the Mayo Clinic. One in Rochester MN is where I had my first surgery and they saved my life. There were others there that were getting repaired from bad surgery other places. I have also been to Jacksonville, Mayo Clinic. Though I have not been to the others mentioned I have heard good things about them.  Thoughts and prayers for you as you make this decision.

Lauren, I would have preferred to keep my J pouch if the high risk of cancer and leakage problems from a weak anal sphincter had not been present.  Getting the BCIR eliminated the risk of cancer and the leakage problems and significantly improved my quality of life.  I would never have been happy with and end ileostomy.

@BillV posted:

Lauren, I would have preferred to keep my J pouch if the high risk of cancer and leakage problems from a weak anal sphincter had not been present.  Getting the BCIR eliminated the risk of cancer and the leakage problems and significantly improved my quality of life.  I would never have been happy with and end ileostomy.

I totally understand! I am just glad you are doing better overall. It must be hard to have to keep the catheter clean all of the time, I am sure you do an amazing job at it though!