Support?

hey there,

my name is Clark and I had my oleo stony reversal after a total collectomy in February. I didn't have a great time getting used to my pouch and am suffering from cuffitis which did not respond to treatment. I go in in 2 weeks for a rectal stripping procedure to see if the scar tissue will protect/save the little bit of rectum they left. I am still pretty sick all the time and in pain meds to get me sort of functional but I'm really not happy with my quality of life right now.

im weak and I can't do the things I love and I can't be out for too long unless I don't eat.

i know many people have permenant oleostomies but I am terrified that that is going to be my outcome. I had a few blockages when I had my stoma and those were pretty painful and scary. I'm just really tired and running low on being positive about my situation. I feel like it's all I talk about half the time and I feel like my friends have probably had enough. I feel like I'm right back where I started before I had my first surgery a year ago. I think I'm beginning to get really depressed about it and I just don't know what to do. I thought maybe it would be helpful to talk to other people who struggle with these kinds of things instead of leaning on my friends so much. I really just want to have a fucking life.

7/3/1610:44 PM

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BillVMember

Hi Clark,

I know how discouraging it is when a surgery designed to improve your quality of life does not turn out close to what you expected. I was one of the early ones to get a j pouch after a straight connection did not work out. It’s a long story, but I hung in there since I strongly did not want an ileostomy. When problems like this happen, you want to be treated by a surgeon who has lots of experience in dealing with j pouch problems. It is my understanding that the Cleveland Clinic is an excellent place to consider if the upcoming rectal stripping procedure does not produce the desired results. The feelings you express are normal when faced with a situation like you now have, but hang in there. There are others on this forum who can provide helpful information on cuffitis, a condition that I did not have. Keep in mind that your latest surgery was only a few months ago and it often takes quite a bit more time for your body to adapt to its new plumbing.

There are two surgical procedures that avoid getting the bag that you so strongly want to avoid. These procedures are the k pouch and the similar BCIR. There is a lot of information on both of these procedures that you can check out in the event your j pouch does not work out, but you are not at that decision point now. I wish you the best of luck.

Bill

7/4/1612:32 AM

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Scott FMember

Clark, I'm sorry that cuffitis is giving you so much trouble. It's amazing how miserable that tiny bit of tissue can make you. The stripping proceduere sounds like a mucosectomy, which removes the lining layer of the rectal cuff. That's the part that gets inflamed in cuffitis. The additional surgical option is pouch advancement, in which the rectal cuff is removed and the pouch is hand-sewn to the anus. This can work very well as long as the surgeon is extremely well-trained and experienced with the procedure. The options Bill describes above (which are excellent ways to avoid an external bag) would generally be chosen only if both the mucosectomy and pouch advancement failed.

Good luck!

7/4/1611:26 AM

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