Hi,
I have had problems with strictures in the past. I have had my J pouch for 23 years. I had surgery to remove a structured portion of small intestine, had multiple scopes to try to open up strictures in past, and lastly had bottom end of pouch re-done b/c stricture/fistula. My diagnosis was changed from UC to Crohn's about 4 years ago. Now I am having all kinds of problems with fistulas/abscesses/setons. I am going to be going out to Cleveland b/c my GI doctor says I should get another opinion before getting the j pouch removed/permanent ileo. Remicade was a big help but I developed the lupus like antibodies. Humira and currently Comzia are not helping me personally. I am ready for the bag but want to make sure it will solve my problems before going forward. I think I have another stricture near the pouch outlet b/c I have been having trouble emptying lately. So frustrating! I am going for IV and PO MRI next week. Can't wait to see what that shows. Good luck to you!! Wish all this evil stuff would just leave us alone!! I have kids too and am tired of missing out on the fun times because I don't feel well.

thanks for the reply. I wish you great success and am right behind you to get to the Cleveland Clinic. I can no longer put myself or family through this shitty quality of life. My biggest concern is also if I will continue to have issues after I get a bag. I am also concerned about how much of my small intestine is still usable, I have at least 3 known active strictures. I am trying to expedite a visit to CClinic and hope to get answers. Good Luck my friend, I will reach out if I find a magic cure for us

Hi!

 

Somehow I totally missed your last post or I would have responded sooner!! So I went out to Cleveland Clinic this week and spoke with colon/rectal surgeon, Dr. Gorgun. I didn't choose him for any special reason...just was able to get an appointment quickly with him. He is recommending I get a temporary ileostomy to let everything quiet down and help regain some strength/quality of life. He said I am not ready physically or mentally for removal of pouch and getting rid of rectal region (whatever the medical term for that is!!). He also said he wouldn't do all that surgery the way my rectal region looks right now with the setons in. I had 2 MRIs done and they are showing stricture at the pouch inlet and some inflammation. He said we shouldn't burn any bridges at this point but I am honestly scared about leaving the diverted pouch in since that doesn't sound like it turns out so awesome for people. I keep trying to tell myself that this is Cleveland Clinic and I really do need to trust someone. I am just so burned out medically and full of anxiety and distrust because I feel like I have been telling everyone locally what I want done instead of them telling me what I should do. This visit made me realize that I need to go to Cleveland to get this done. The local hospital I work for and need to use just don't have enough experience with J pouches as far as I am concerned. It sounds like Cleveland doesn't even know what my fate will be; they plan on examining my rectal region, pouch, and some of the small intestine while I am under for surgery. The most fabulous new is they may be able to do the temp ileostomy laparoscopic...all depends on scar tissue. I know I have a lot of scar tissue b/c I have been cut open a number of times but I am still hoping for a miracle and no open abdomen which usually leads to the dreaded NG tube!!  As far as I know, my insurance is only going to cover 50% of the expense so that is another stressor I am trying not to focus on but is definitely in the back of my mind somewhere. I hate that everything has gone so wrong and I don't know how much more I can take. I am really thankful for all the time with my pouch but my attitude has definitely gotten worse as time has gone on. I realize that you have more of a stricture problem than anything else, but I thought you might appreciate what info I got at Cleveland. I know everyone is different but I do like hearing what other people have gone through in case I can relate to it or if it is something that happens to me in the future. Good luck with your cranky intestines and keep me posted!! The saving thought of having the permanent ileostomy is knowing you will feel better after....I hope someone can give you an answer to that question!!