Patient Blogs | Ulcerative Colitis
How Connecting With Other Patients Helps With My Ulcerative Colitis
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Living with ulcerative colitis has been difficult at times, but I have been helped, strengthened, and comforted by connecting with other patients. Just telling people that I have ulcerative colitis has started conversations with others who either have ulcerative colitis or Crohn’s disease themselves or know someone who does.

After I received my diagnosis, the first patient I connected with was my cousin. He was diagnosed with Crohn’s disease about 8 years before I was diagnosed with ulcerative colitis. I found out about his condition from my mom, who often fills me in on family news. I don’t believe in jinxes, but several times she told me that she hoped I never had to deal with what he had. Well, guess what? I ended up having to deal with a similar issue! He and I both started on the same biologic. While that biologic stopped working for me after 4 years, it’s still successfully managing his condition some 13 years later.

Another patient I connected with was a former student who had ulcerative colitis and ultimately ended up having her colon removed. I reached out to her when I was just starting my original biologic and my care team and I were unsure if it was going to work. She, too, had been on the same biologic as my cousin and me. She and I talked about what it’s like not to have a colon and what my options were if I did have to have my colon removed. One option would be the removal of all or part of my large intestine and the subsequent use of a pouch on the outside of my stomach to collect my waste. Another option would be the creation of an internal pouch in the small intestine. That’s the route she went. Fortunately, I haven’t had to make this decision, but it was helpful to learn about her experience just in case.

Finally, another patient I connected with is a colleague at work who also had ulcerative colitis. We have commiserated with each other about having to make frequent trips to the bathroom at inopportune times. He, too, had been on the same biologic as my cousin, my former student, and me. Unfortunately, the biologic didn’t work for him, and he also had to have his colon removed. He opted for the external pouch. I last saw him a few months ago when he and I passed each other running on a warm Saturday morning. He was shirtless and wore a special belt to keep his bag in place. (I didn’t even notice the bag and asked him about it later.) Even though we exchanged only nods, I found his presence encouraging. If he can train for half-marathons without a colon, I should be able to as well -- if it ever comes to that.

Connecting with other patients has been a great relief for me. It’s good to know I’m not alone and that there are other patients I can count on for help, strength, and comfort.

 

 

Photo Credit: fizkes / iStock via Getty Images Plus

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Brett Gaul

Brett Gaul

Diagnosed since 2016

Brett Gaul has lived with ulcerative colitis since 2016. A philosophy professor, Gaul enjoys sharing his passion for philosophy and helping students live more meaningful and successful lives. When he’s not having interesting dinner conversations with his history professor wife and three children, he likes reading, running, and rooting for Minnesota sports teams. 

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