Proctocolectomy

Hello All,

I was diagnosed with Crohns disease over two years ago and the disease has progressively gotten worse over time. I currently have a temporary loop ileostomy. I continue to have recurring perianal abscesses and fistulas - i have two setons in place right now.

During my last colorectal surgeon visit, the next step since the disease has progressed so much is a proctocolectomy. I was advised since the perianal disease is so bad, that they will need to perform a flap surgery as well by taking muscle from my thigh or stomach to close the perianal wound. I have tried Remicade, Entyvio, and am now on Humira 1x per week with little success. Imuran was not successful either.

Has anyone had or know someone who has had the flap surgery and what has the experience been like? I've been told that I may not be able to leave the hospital bed for up to three weeks post surgery.

Any comments would be greatly appreciated! Thank you all!

Originally I had a temporary loop ileo as well. But the disease got progressively worse with abscesses and fistualae. Got the permanent total proctocolectomy. Painful but very happy I did it. In June I had the flap surgery for an abscess. Its called a gracillis flap. They took the muscle from my left leg. Not as painful as proctocolectomy but still not fun. I left the hospital two days adter surgery. I still have the VNA coming though. Wemt from everyday to twice a week.

Any questions, just ask!

For a couple weeks after the muscle removal I was limping. The leg was more painful than the butt after surgery without a doubt. I was told the gracillis muscle is the muscle you use to cross your legs. I've crossed my legs since and its still a bit painful but I think that is more from the surgery itself than an inability to do so. Besides the limping all of my activities were normal after a week.

I went home with two drains one in the butt and one for the leg. The VNA is the visiting nurse who will come to your house and make sure everything looks good. They will come the day after you get home from surgery until they are no longer needed. I am about 9 weeks out from surgery and the nurse still comes to pack the butt wound and I handle every other day myself. Each person is individual, you may not need packing. The nursr is there basically to track your progress as well as check vitals, etc.

As far as the flap, for the first two weeks I wasn't allowed to sit at all. No driving. Bathroom wasn't easy. Once I was allowed to sit/drive I was thrilled, but there was still a lot of pain.

As with all surgeries your activities will be limited so as not to shake anything loose. Besides sitting, no other limits regarding the flap. The leg incision though did limit bending, socks and shoes, that kind of thing. Not only do you have a massive incision but you've lost a muscle. Anything you normally do that uses those leg muscles is going to be hard/painful.

Feel free to ask any other questions

The muscle has completely recovered. For me, there's no difference from before surgery as far as amy kind of limitations. The scar is a bit gnarly though. It's a bit over a foot long. First time seeing it, my Dad called it Frankensteinish and my Mom cried.