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3 years after total proctocolectomy, still having skin issues

Sun, April 19, 2015 9:24 PM

I am 32 years old, and I've suffered with crohns, UC, and perianal disease since I was 10 years old. 3 years ago I decided to have surgery to remove my entire colon, rectum, and anus. Now, 3 years later, the anus is still open, skin is breaking down, really never healed, and my doctors just keep prescribing me steroid creams. I don't mind having the Ostomy, but this skin break down is really painful and uncomfortable, not to mention unattractive. Has anyone out there had this surgery and experienced similar symptoms? I'm curious if maybe some of the diseased tissues weren't all removed. But I'm tired of my C&R surgeon and dermatologist tell me it's my Crohns attacking my skin... I feel like I'm this rare case and no one knows what to do, please any help or advise would be greatly appreciated. I've been on every IBD med out there. Currently, been on Cimzia and 6-MP (purinethol) but stopped the Cimzia after being on it for 5 years because I'm not seeing a change. HELP!! :)

jsmith0913
Joined Dec 14, 2010

Tue, May 26, 2015 1:41 PM

Just to let you know that I had the same surgery over 35 years ago. I am now 66 and do not take any medication, even though perhaps I should. I really don't have the issues that you seem to be having, and I can't remember that long ago. Even though the surgery was rough, it did give my life back. I do sometimes have skin breakdown from leakage from my appliance. Perhaps you should follow the same protocol. call up your appliance provider to discuss. good luck.

osteobubby
Joined May 26, 2015

Wed, April 29, 2015 1:53 PM

Reply posted for jsmith0913.

I understand about not wanting to deal with particular doctors anymore. I went through everything you are going through, and to that extent you are rare. I was also extremely rare as my problems began when i was 5. When i was 18 after many resections strictures perforations fissures and thousands of fistulas they decided to do a total collectomy on the remaining portion of my large bowel and rectum, i said no and never went back, at 23 i couldnt run any more because my insides had been overrun with more fissures fistuals and 12 abcesses to the point i could no longer urinate. After my total colectomy i ran as far as i could from doctors because i felt the same way as you. In the end i ended up going to harvard guys to get my issues dealt with properly. It seems like alot of the medical world has their own misconceptions about this illness.

scotlemay
Joined Apr 29, 2015

Wed, April 29, 2015 1:47 PM

Reply posted for jsmith0913.

Yes, I had the same thing done 15 years ago, and it took about 4 years or so to heal enough that it didnt bother me to much anymore. I actually ended up regulating my own sits baths. I'm sorry your going through this. It can be very uncomfortable and annoying.

scotlemay
Joined Apr 29, 2015

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