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Hi everyone..has anyone had a failed kpouch, gone (back) to an ileostomy and then decided to give the kpouch another try?
I am honestly so completely miserable with this bag. It is my second ileostomy, had the first one for 3 years then decided to try the kpouch and after 5 revisions, i couldnt handle the constant surgeries anymore and had an ileostomy made. I was then diagnosed with pyoderma gangrenosum which took steroid injections (luckily that was all it took) for months to clear up, now have a bad rash on my skin.. i just hate it. I am scared to try the kpouch again (ive given it 5 tries already). If anyone has any suggestions or advice id be really happy to hear it. thanks
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You have to be under 2 meters to be at risk for short gut syndrome. Usually people that had their stomachs removed and intestine face issues more. I mean there is a guy at my clinic that has 2 feet left of small intestine and a tumor resides in it that they have to take out more. He's living and doesn't have major short gut issues that he need to be on TPN all the time just yet. Good luck!
Ris,
I dealt with it like everyone else...some days good, some days awful...hope in the morning, depression in the evening....
In other words as long as Dr C said that it could be fixed, could be repaired or that there was hope I was like a young and naive soldier going off to war thinking only of the glory...then the realities hit...I was strong when it came to pain, post op and yuck and guts...I was less courageous when it came to slipped stitches, popped hernias, sunk valves, split skin and suture lines, occlusions, infections and all of the other post op complications...not to mention the physcial price and cost...but I am a pit bull when it comes to my K pouch...I do not let go! I wanted it 33yrs ago and still want it and fight for it daily....so somewhere along the way I do what has to be done and bite the bullit...always keep the eye on the prize as they say...plus, a really good surgeon and support group helps (you guys here and my very best friend who has lived this hell alongside me)...If there is hope then please go for it if feasible...SGS is not as frequent as you think and there are tons of suppliments...Also your k pouch takes over the role of absorption very quickly and will help a lot in that aspect so do not worry so much about that as about the rest...make sure that you are physically and mentally as strong as possible going in to it and make sure that you baby it...and yourself for the first 3 months coming out of it.
PM me if you need any help
Sharon
Wow.. Sounds like you've been through a lot and know yourself as well as anyone possibly can. I like the term "naïve little soldier." You are the first person I've talked to who really seems to understand the fight to have a k pouch. I did whatever it took also.. I kept saying eye on the prize each time. I'm going to PM you when I have my computer back in a few days. Thanks so much for your support.
I echo what Sharon has to say. I too have been through an end ileostomy, conversion to a kp, multiple revisions and multiple valve re-dos (lost count..), plus many adhesional lyses and a few surgical hernia repairs. The good and the bad, but Sharon said it well, keep your eye on the prize, have a great surgeon and go for it. I would never consider going back...

john

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