The Ugly Fistula

Last updated: February 2022

Some things in life can’t be explained. The hole that took up my stomach is one of them. I always thought I had a great-looking stomach. I was thin, had a six-pack. When I decided to get my colon removed, I knew I would lose all of that. 

Crohn's surgery and a fistula

My first surgery on my stomach left me with 82 stitches being removed. The scar healed very nicely, but when they went to open me back up to reverse the ostomy, they could not close me. My body had formed a very big fistula, probably the size of an adult fist. It was literally a hole in the center of my stomach. 

The surgeons could not close me right away because I was too weak to survive another surgery and they wanted my small intestines to "heal." So, there I was, lying in a hospital room with this hole. Not too bad right? Well, it was pumping bile out and running down my sides. Bile is very acidic, so it would burn my skin. The more I ate or drank, the more bile would come out. It was a nightmare.

Fistula wound care

I remember, the "wound nurse" would come to my hospital room and change the wound care supplies like every hour. The wound care contraption that they had on my stomach had to be specially designed, because of how big the hole was. I do believe that at one time, it was as big as a football. No lie!

I know that the hospital had trouble sending me home because the output of the fistula was very high. Since I was only allowed sips of water, even that made the output even higher. The hospital had to figure out a way to capture the bile, so it didn’t spill all over my body and the floor.

The wound care nurse was able to come up with a system that allowed a suction tube to be put into the area of the fistula. It would suck out the bile and fill up a canister next to my bed. It worked like a catheter bag. The problem was that the wound manager on my body has literally pasted on with this strong skin adhesive. Ugh, I remember when my mom would take this device off me, we had to let my skin air dry, to allow some of the skin irritation to go down. It was like the skin around my fistula was "scorched." We would use a lot of barrier creams to try to "wick" off the acidic bile from burning my skin. It was a nightmare!

Managing my Crohn's wounds

When the hospital sent me home for a few months to heal and get stronger, managing the wound was very hard to do. I remember having actual nurses coming to the house to help keep the inside of the wound as clean as possible. Remember, if my wound got infected, I most likely would not have made it out alive, as my body was so worn down from the 371 days in the hospital. 

That being said, the wound controlled our lives for the 3 months I was home. It was hard to stand up, hard to lay flat on my back... hard to live... I couldn’t wait for the "team" to "put humpy-dumpty back together again!"

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