Crohn's Disease Forum » Your Story » Loop Illeostomy Reversal Surgery- Scared

04-23-2017, 06:33 PM   #1
Join Date: Apr 2017
Loop Illeostomy Reversal Surgery- Scared

I am 21 years old, a female, and was diagnosed with severe complex Crohn's approximently 2 years ago.

Since I was diagnosed I have gone through Remicade, Humira, Methotrxate, Cimzia, and plently of steroids- nothing worked. I was forced to have a loop illeostomy 7 months ago because I was extremely ill and could not recover on my own. I dropped to 82 lbs (43 lb weight loss) and could not walk or stand long on my own. They wanted to do TPN along with the surgery but I refused. I am an active and very social college aged girl (had to drop out due to being so sick for so long.

I started Stellara about a month ago and gained much of the weight back since the surgery. I am active now, still with chronic pain. The Drs know how badly I did not want an illeostomy and are allowing a reversal in two weeks. I am so scared to go back to being so sick again and having to use the restroom 15+ times a day. Being in that much pain everyday and not being able to live my life is extremely scary to me, but living with an illeostomy is also extremely scary. I am here to look for opinions and thoughts- maybe some comfort as well…

Should I have the reversal surgery? Has anyone gone through something similar? Is the risk worth the reward?
05-01-2017, 04:45 AM   #2
Senior Member
Join Date: Feb 2016

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I was 19 when I was forced to have a permanent ileostomy due to a Toxic Megacolon. I was devastated at the time. Everything in my world changed.

17 years on from the creation of my first Ileostomy I realise that it was necessary and in the long run it has made a positive difference to my life. It's difficult facing up to change and any point in life but some times it is for the best.

I would encourage you to try and talk to someone around your age with an Ileostomy. There are normally local support groups that your Surgeon can put you in touch with.

In the meantime, all the best.

05-01-2017, 06:40 AM   #3
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I have not had one but I wish you the best. There is a surgery section in here that you might check also
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.

Crohn's Disease Forum » Your Story » Loop Illeostomy Reversal Surgery- Scared
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