Bless you. Please don't give up asking questions. Don't sit back and just hope. Keep fighting. Keep asking those questions and get 2nd and 3rd opinions if you have to from everyone you can. Don't try to hold on to having the pouch, for the sake of not wanting to have a bag. I can tell you from personal experience that you can live, and I mean really LIVE, with a bag, if it comes to it. Please read all the posts about having the pouch out/perm ileo. They are really helpful. Just don't let them decide your fate, keep fighting, keep asking those questions. And if the best doctor you can find, says have the pouch out, then don't hesitate. Best wishes to you xxxx 

By 'them' I mean the doctors and surgeons, who don't always know what the best thing to do is, sometimes our own instinct tell us when enough is enough...

Hi Patti Ann,

I concur with the recommendation to get an opinion from Cleveland Clinic since they have an excellent reputation for dealing with problematic j pouches. Hopefully, they will be able to provide treatment that will allow you to have a satisfactory j pouch. You may be aware that there are two alternatives to an end ileostomy in the event you are unable to keep your j pouch: the k pouch and the similar BCIR.  There is lots of information about both of these procedures that avoid the need for an external bag.  In some cases, the surgeon can use the j pouch to make a k pouch or BCIR.

I went to Mayo Clinic in Rochester for a second opinion after being advised that recurrent high grade dysplasia in the anal canal made retaining my j pouch extremely risky.  The surgeon at Mayo said they would only give me an ileostomy, which I strongly did not want for its quality of life issues.  I continued my search and found a surgeon who gave me a BCIR that has allowed me to have a very good quality of life.  Please send me a PM if you have any questions about these two options.  Best of luck to you with whatever you decide to do.

Bill