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My fight against Ulcerative Colitis

I was diagnosed with ulcerative colitis in 1993 at the age of 23. It was so aggressive I was told by my gastroenterologist that I would have colon cancer within 10 years if I didn’t get my entire colon removed. 1993-1998 I dealt with the side effects of high doses of prednisone until it became unbearable. At the age of 28, I decided to have surgery. The surgeon removed my entire large intestine and most of my rectum to construct an ileal pouch anal anastomosis (IPAA or J-pouch) along with a temporary ileostomy. I had a somewhat normal life for about 2 years with several small pouchitis flares.

Surgery After Surgery

I started having fistulas after fistulas with every fibrin glue repair resulting in failure within months of each takedown. 1998 to 2010 I had totaled  27 (twenty-seven) surgeries. 3 temporary ileostomy, 3 takedowns, 1 incisional hernia and a total of 20 abscess/fistula repairs all done in Birmingham, Al. In 2010, I traveled to the Mayo Clinic in Jacksonville Fl. Dr. Metzger did a temporary ileostomy. 1 month later a rubber band seton for abscess-anal fistulas (Of which I had to pull daily to help create scar tissue where the fistulas were). My fistula was in the form of a horseshoe. After studying everything my previous surgeon did, the surgeon at the Mayo Clinic looked closely and realized the reason behind the last unsuccessful surgery. My surgeon failed to see the horse shoe. I actually had 3 fistulas instead of 2.

The next month he implanted an anal fistula plug for the 3rd fistula and 6 months later I had the takedown. A total of 31(thirty-one)surgeries. I can proudly say the last 8 1/2 years I’ve been surgery free, however I continue to have many pouchitis flares (10 to 15 bm) and occasional c diff from the antibiotics. In 2 months I’ll celebrate my 49th birthday and I must say I persevered through my darkest moments. Stay encouraged everyone!

“You never know how strong you are until being strong is the only choice you have.” —Bob Marley 

-Sheila

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    7 months ago

    Thank you so much for sharing your story with the community. You are such an inspiration. Keep moving forward. Keep being a light to others. You’re a gem. Love that you remain positive despite your hardships.

    Brava, warrior.

    Always dancing,
    Elizabeth (team member)

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