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Total Proctocolectomy

So, I had a loop ileostomy last month and I'm starting to get the hang of this bag thing. Finally able to leave the house and participate in life. Woo hoo!

But lately I've been having Crohn's symptoms again (pain, urgency, passing blood into the toilet). And I haven't had the energy to do much of anything. My doctor said I will probably need a total proctocolectomy. I'm up for anything that will improve my quality of life. But the idea of taking everything out, never to be put back together again, is kind of scary. Any thoughts or suggestions?

Hi Amy,
Before my Proctocolectomy, I was like you descibe. Since my surgery, I am so far free of any Crohn's symptoms and feeling great. It's like before I had Crohns. Yes, it is a scary operation, but it worked out for me.

I had my surgery at Mt Sinai and I was satisifed with the experience there. The surgery is a two person effort, with one doing the top and one working on the butt.

I also had some complications where my perianal stitches opened up. Apparently that happens in some low percentage of cases. So, they just let it heal open - not really a fun experience. Most people seem to say that their butt healed just fine.

Another thing to be aware of is possible sexual complications as they are working very close to nerves in that area. Of course it is different for men and women. I consider myself lucky, my function is just about the same as before, but there is a difference. If anyone is interested in the details, just PM me. I've read that women can have issues related to removal of the rectum and internal support of the lady parts, resulting in differences during intercourse.

What do you think of the latest threads on stem cell therapy? Could literally save your butt.
Joe - thanks for your reply. I am so nervous about this surgery and not sure I'm ready for another one so close to my last surgery (Dec 20th). I've only just started to feel back to my old self again...

I'm going to look into stem cell therapy now that you've mentioned it. I wonder if I should put this surgery on hold? I wouldn't want to have everything taken out when there's hope around the corner, you know?
I know it - but it's too late for me :( No putting those parts back now. Anyway, have you read the two recent stem cell threads on here? One is a bit older and one is newer. The therapy is not a walk in the park and is still in trials, but maybe worth taking a look at.
Just read up on the stem cell threads. Very interesting. I found that Mt Sinai is recruiting for a Prochymal stem cell study which I am going to look into. I will let you know what comes of it. Thanks for your help, Joe!