My Experience Living With an Ileostomy

Living with a part of my intestine poking out of a hole in my side was gross but worth it
By Michele Goncalves
Michele Goncalves
Michele Goncalves
November 28, 2019 Updated: November 28, 2019

Cancer is one of the most common diseases of our age, and yet those who face it rarely know what’s about to happen to them beyond the broadest terms. “Cancer up Close” is an open recount of Michele Goncalves’s cancer journey from pre-diagnosis to life after treatment.

I’m not sure if anything can truly prepare you for seeing your stoma for the first time. Imagine looking down at your abdomen and seeing a thumb-size piece of your small intestine poking out of a hole in your side, which you are now going to the bathroom out of.

It is gross and overwhelming in the beginning, I’m not going to lie. However, just as with any other change in life, you get used to it. At least that is what I experienced. Nevertheless, my nine months living with “Lilly” (the nickname I gave my ileostomy) wasn’t always smooth sailing. There were some urgent trips to see my wound care nurse, and a messy leak during a public outing, but all in all, it wasn’t as bad as I thought it was going to be.

The first big task was learning how to change my bag (where the waste collected) and caring for the skin surrounding the stoma. It took me a few weeks to master how to position my body so I could remove and replace my bag easily. Eventually, it became second nature.

However, what I don’t recall being told was that the little intestine poking out shrinks to a smaller size a few weeks post-surgery. As a result, you must adjust your supplies accordingly to keep a snug fit to protect the skin. Not knowing this, I kept using the same size supplies, and a week later I had a large patch of raw (and extremely painful) skin where the acid from my waste was eating away at my flesh. Needless to say, this triggered an urgent visit to see my ostomy nurse, where protective sealants were put around the area until it healed.

Another thing that took adjusting to was the fact that my bag would often blow up like a balloon with air (or waste), and look quite obvious under my clothing. Although my nurse said that it wouldn’t be noticeable and I could wear fitted T-shirts and even a bathing suit, I did not find this to be true.

I was extremely self-conscious and had to buy special clothes (baggy shirts and dresses) to disguise my pet “cauliflower” as I referred to it. This was one of the most difficult parts of the ileostomy journey for me to cope with. I hated the way I looked and tried my best to disguise things as best as I could.

Lastly, the biggest worry I had throughout my nine months living with my ileostomy was having a leak happen in public, and not being prepared with supplies. This happened to me only once. My wafer (the piece you stick to your skin that the bag clips onto) and bag hadn’t been changed when it should have been (every 3 to 4 days), so the seal on the wafer began to wear out.

During a lunch date with a friend of mine, I suddenly started to feel itchy and a slight warm liquid oozing in one spot. I escaped to the restroom and noticed that my wafer had become unglued on one side, and my liquid waste was starting to come out. Sadly, since I wasn’t prepared, I had to end my visit early and drive home holding my wafer against my skin with one hand to limit the mess as much as I could. I learned my lesson and never left home without a full kit of supplies after that.

Despite these unpleasant incidents, I knew that having this temporary ileostomy was a necessary part of my healing journey. The new colon connection constructed during my tumor reversal surgery was being given the time it needed to heal. Looking back, it was a small price to pay for having a functioning colon now, and I’d do it again in a heartbeat if I had to.

Join me next week when I will share my difficult experience of going through two cycles of simultaneous IV and oral chemotherapy.

Until then, breathe deep, be kind, and take it one day at a time.

Michele Goncalves is a financial compliance and fraud auditor for a Fortune 500 company by day and a passionate pursuer of holistic and functional medicine knowledge by night. She is also the author of the column The Consummate Traveler.

Michele Goncalves
Michele Goncalves