Proctocolectomy

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Jlang12
New Member


Date Joined Sep 2016
Total Posts : 12
   Posted 9/1/2017 3:52 PM (GMT -6)   
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!

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1529
   Posted 9/2/2017 7:09 AM (GMT -6)   
I had a proctocolectomy but not the flap surgery.

4 months after surgery my wound was still a little open and they mentioned this surgery as an option so I researched it a little. I think there was someone on the ostomy forum that may have had it done, there was also a YouTuber I found who talked about her experience.

You may want to post on the ostomy forum also.

I was very nervous about the perianal wound and the beginning was a little rough, I had one fistula repaired during my surgery. For me it was worth it, to no longer have pain down there is amazing.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 268
   Posted 9/3/2017 10:40 PM (GMT -6)   
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!
Sarah, 24 y/o
June 23, 2014 Total proctocolectomy w/ perm ileo
Temp Ileo since 2010
Thyroid Cancer, Crohn's Disease, Chest Masses, Undiagnosed Autonomic Dysfunction Condition, Undiagnosed Low SpO2 Rates, Heart Shunt, other unknown conditions

Current rx: Celexa, Pentasa, Remicade, Synthroid, Multivitamin, Calcium w/ D, Fentanyl, Dilaudid, Depo Provera, Zofran, Lansoprazole, Metoprolol, Benadryl

Jlang12
New Member


Date Joined Sep 2016
Total Posts : 12
   Posted 9/3/2017 11:03 PM (GMT -6)   
@riddlemethis Did you lose any mobility in your leg since they took muscle out? What is VNA and what was your recovery time to return t normal activities after the flap surgery? Also, do you have any limitations with the flap, i.e. running, bending over, etc?

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 268
   Posted 9/4/2017 3:23 PM (GMT -6)   
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 smile
Sarah, 27 y/o
June 23, 2014 Total proctocolectomy w/ perm ileo
Temp Ileo since 2010
Thyroid Cancer, Crohn's Disease, Autonomic Dysfunction, Heart Shunt, Chronic Kidney Stones, etc

Current rx: Celexa, Remicade, Synthroid, Multivitamin, Calcium w/ D, Dilaudid, Birth Control, Zofran, Lansoprazole, Metoprolol, Benadryl, Vitamin B12 Shots, Probiotic, Allergy Med, Xanax, Ambien, Loperamide

Jlang12
New Member


Date Joined Sep 2016
Total Posts : 12
   Posted 9/4/2017 3:34 PM (GMT -6)   
When you say limit bending because of the muscle, is that permanent? I have a little one and that would be very difficult having limitations wth bending over. I am also a golfer and that requires a lot of bending over/reaching down as well.

Has the muscle recovered or do you believe the limitation will be long term?

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 268
   Posted 9/4/2017 10:44 PM (GMT -6)   
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.
Sarah, 27 y/o
June 23, 2014 Total proctocolectomy w/ perm ileo
Temp Ileo since 2010
Thyroid Cancer, Crohn's Disease, Autonomic Dysfunction, Heart Shunt, Chronic Kidney Stones, etc

Current rx: Celexa, Remicade, Synthroid, Multivitamin, Calcium w/ D, Dilaudid, Birth Control, Zofran, Lansoprazole, Metoprolol, Benadryl, Vitamin B12 Shots, Probiotic, Allergy Med, Xanax, Ambien, Loperamide

DCCrohns
New Member


Date Joined Jul 2011
Total Posts : 14
   Posted 9/11/2017 6:40 PM (GMT -6)   
Wow...folks with similar stories!

I am a fellow fisutlizing Crohn's case (diagnosed 15+ years ago) and I have had a myriad of surgeries (and tried several biologics).

I most recently had a temp ileo and gracilis surgery to address the large (and in charge) fistula. Good news is that the gracilis procedure (though a pain to recover from) appears to have vastly improved that fistula. The bad news is that I subsequently developed a new, draining tract. I still have the ileo and have been exploring my medical and surgical options with second and third opinions.

To cut to the chase, going all out is on the table but I want to make other attempts before going there. Today, in fact, I (with my doctors) have decided to make the jump from Humira to Stelara, adding an immunosuppressant. My hope is that I will see some improvement and, if not, I may try a Martius flap before looking at proctocolectomy or potentially something more experimental like the Turnbull-Cutait procedure.

It may suck to go through all of this, but at least we're not the only ones!

Best to all.

Post Edited (DCCrohns) : 9/11/2017 7:25:43 PM (GMT-6)

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