Post Edited (Irish_Mom) : 6/21/2008 6:42:43 PM (GMT-6)
I have had crohn's disease for 16 yrs now. In august 2001 I got a resection surgery done and I ended up with a permanent ileostomy. I have regreted getting it done since day one. I thought that by having it done i will not need another surgery or i won't be in so much pain anymore...not so. since then i have had another bowel resection, and 2 parastomial surgerys done. The latest resection i had done, crohn's returned the following check up about 2 months later i was sick again...needless to say..i am depressed..and have been diagnosed with that too because I am so unhappy with wearing this bag on my side. There have been problems associated with that too. So since August I've begged my surgeon to give me other options rather than having to wear this bag..he said there are NO other options..I came across the BCIR procedure and my spirits lifted..I know that it is not normally done for crohn's disease patients..but i am hoping to hear some success stories with people who have crohn's disease and had the BCIR procedure done...As far as i know there are no surgeons in my province that do BCIR's, so i live in Canada..anyone know a good surgeon i can contact to evaluate my situation...I would love to hear from anyone who knows what i am talking about...thank you ..................posted June 2008
If I were you I would continue to do searches of BCIR on the web and I would also contact the Cleveland Clininc and the other hospitals that do the procedure to give them your story. From what little I know about it, it sounds that they are trying to find the "right" candidates in a series of different situations as the trial candidates. That means that you may fit into the criteria of one of these areas. By now they may even have a surgeon or two in Canada that is trained in this procedure. Even if not it would be nothing I am sure to have you come to the states to have it done.
I can understand your frustration with the bag on your side and hope that through perseverance that you can make your situation work for you. I will warn though, watch what you wish for. It sounds like with this procedure there may be a whole host of new side effects that go along with it so make sure you can handle what it could possibly dish out.
If this is truly what you think will work for your situation then don't give up. Your surgeon saying there is no other options means that there is no reason to talk to him any more, find a new surgeon who does have options. If it is determined that you wouldn't be a good candidate for BCIR then look for other possible options, like the Koch's pouch if they still do it.
Good luck and keep us posted on any discoveries that you make.
p.s. On the bag and depression thing, just remember that the bag is only part of your exterior make-up kind of like a pair of work shoes you don't like or pair of glasses that keep falling off. Since it is an add-on it has nothing to do with your internal make-up which is the most important part of you.
Total Colectomy with End Ileostomy May 27th, 2008