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Lessons Learned: My Ulcerative Colitis Diagnosis

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Brett Gaul - Blogs
By Brett GaulMay 24, 2021

My first sign of trouble of was on the last day of 2015. I was in a Sioux Falls, SD, hospital because my grandmother had suffered a stroke earlier that day and had been flown there from Minnesota. After picking up some personal items from her assisted living facility, I made the hour-and-a-half trip to Sioux Falls. She looked OK, all things considered, and was happy to have her purse and some clothing. 

Before beginning the hour-and-a-half drive home, I used a hospital bathroom. I noticed a bit of blood in my stool. I thought that was odd, but because I’d previously had problems with internal hemorrhoids, I didn’t worry about it.

Throughout January, I saw blood in my stool regularly. However, it wasn’t until February that I finally made an appointment with my primary care physician to talk about the problem. I now know that I should have contacted my doctor much sooner, but at the time I regarded the bleeding as only a minor inconvenience. I saw her in March, and she recommended a colonoscopy. I got the test April 1. That same day, I was diagnosed with ulcerative proctitis -- inflammation of the lower colon.

At this point, I wasn’t too concerned. The doctor who performed the colonoscopy prescribed mesalamine suppositories, so I assumed that I would take them for a while, the condition would go away, and I’d be back to my old self soon.

I couldn’t have been more wrong.

Over the next 6 months, I took mesalamine suppositories, mesalamine enemas, and mesalamine pills. Nothing helped. As the inflammation deepened and crept up my colon, my diagnosis changed from ulcerative proctitis to ulcerative colitis. I went from having one bloody bowel movement a day to as many as 15.

It’s difficult to live a normal life when you have to go to the bathroom that often. You’re always mindful of where the closest bathroom is. I’m a professor, so when I was at work, I made sure to use the bathroom right before my classes started. Once, during an exam, I had to leave class abruptly. I just couldn’t wait.

To decrease the frequency of my bowel movements, I avoided high-fiber foods and simply ate less. I felt sluggish and was losing weight. I also had occasional discomfort on the lower left side of my abdomen. Bowel movements were soft, loose, and bloody, and many were extremely urgent. Often a bowel movement was just blood or something that looked like bloody applesauce.

By October 2016, I was back in that same Sioux Falls hospital, only this time I was the patient. I wasn’t supposed to see a gastroenterologist until November, but my condition was worsening rapidly. When I told the gastroenterologist’s nurse that I was having as many as 10 bloody bowel movements a day, she instructed me to check myself into the hospital. There, I saw a gastroenterologist, who prescribed prednisone pills to knock down the inflammation.

They had no effect. I was soon having as many as 15 bloody stools a day. Within 2 weeks, and in danger of losing my colon to damage from my UC, I was back in the hospital. This time, the gastroenterologist recommended an intravenous biologic medication. However, because prednisone had failed to work for me, I was told that I was “in a really bad camp.” For patients like me, this biologic worked only about 30% of the time. But it was the best available option.

Not even 2 weeks after my first dose of the biologic, I had my first blood-free bowel movement in months. It was glorious! The medication eventually put me into deep remission and helped save my colon. It worked well for a few years until August 2020 when, unfortunately, it stopped working. I began to experience abdominal discomfort and bloody stools again.

As of today, I still have my colon, but I am on another biologic. So far, it’s working. Given my track record with other medications, though, I’m not looking too far ahead.

In retrospect, I should have contacted my primary care physician much earlier than I did. Although it may not have prevented me from going through so many medications, it would have been better for my physical and mental health. When the first biologic started to fail me in August 2020, I contacted my gastroenterologist at the first sign of trouble. Lesson learned!

Photo Credit: Anupong Thongchan / EyeEm

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About the Author
Brett Gaul

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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