Honoring Myself in My Ulcerative Colitis Journey
Last updated: August 2023
When I first noticed the bleeding, I was 20 years old and convinced everything would work itself out.
First symptoms of ulcerative colitis
At that age, it felt more “normal” to pay attention to my college schoolwork, my recent break-up, getting my study abroad trip planned, and lining up a summer internship rather than dealing with some health issue. Though my Mom had some chronic health problems, I’d never assumed I would inherit them and so I didn’t think it might be important to go to a doctor, figure out what was going on and take care of it.
Healthcare experiences felt weird
But over the next year, my bleeding became more prominent and so I did end up going in to see a specialist. Though he was gentle enough, I found the experience of him checking my anus humiliating and I held back tears of embarrassment. After the appointment, the doctor called my ailment proctitis and prescribed me some suppositories to use nightly. Though they started to stall the bleeding some, it didn’t work all the way. I found myself getting lazier with taking the suppositories and I didn’t schedule a follow-up when I should have. Besides, things felt “handled” and I didn’t want to have to experience the exam again.
By December of that year, I realized I was still sick and, in fact, getting sicker. I was starting to need to use the bathroom constantly. There was always blood in the stool, but sometimes I would see just blood and pus in the toilet bowl and nothing else. I made another appointment, but once I saw the specialist in January, he told me that the inflammation had spread, and I needed to see someone else. This doctor explained to me that I had—and continue to have—ulcerative colitis.
My doctor and I decided to try to use Mesalamine, an anti-inflammatory, to subdue the inflammation. We didn’t want to use the steroids for fear of the side-effects. I was also given a nightly enema, which I found uncomfortable to use, but helpful in reducing my daily discomfort. The doctor also ordered a C.diff test which came out negative.
Over the course of the next few months, I saw some improvement in my physical health, although my emotional health suffered. I spent most of my time either forcing myself to act exuberantly at my internship or crying in my bed about how terrible I felt. I spent time with friends, but only at home where my bathroom was close by, and I changed my diet to exclude alcohol, coffee and dairy. Slowly the pus and blood diminished, but they were replaced with aching pain in my left side. I pushed my doctor to test for C.diff again—and this time, the test came out positive. I wondered, privately, if my first test had been incorrect, but it was too late to worry about that. I took the prescribed antibiotics and found myself in remission.
A false alarm for UC remission
For the next three years until 2018 my UC remained under control. I even started to drink alcohol again. I felt like I could live the same life as my friends, family, and partner. But then the bleeding started up despite the Mesalamine. The enemas didn’t have the same effect as they had before. In 2019, I spoke to a new doctor about my next steps, and he put me on 6MP.
Unfortunately, it turned out that I had a rare condition where my body couldn’t process 6MP. I got extremely sick and had to go to urgent care because of my exhaustion. It turned out that I no longer had a healthy white blood cell or red blood cell count. I ended up in the hospital for a whole week, lost all my hair, and developed ulcers all down my esophagus. I got daily white blood cell injections and took other medications to heal the ulcers. Once I was released from the hospital and ended up there again three weeks later for a relapse. Luckily, after that, the 6MP was flushed out of my body and my strength started to return.
Recovering from this was not easy, from my self-esteem to my actual physical ability to walk long distances. But in the two years since, I have started to see that time as just another part of the unpredictability of life and a lesson in treasuring my perseverance and personal power that is visible in the hardest of times.
Returning to a more normal life with UC
Lately, UC has been quite under control—it seems like the shock to my body with the 6MP got my UC back on track!—although I do witness from bleeding every so often. I focus on my own needs instead of what other people are doing. I am now on the Mesalamine instead of the 6MP, but my newest doctor and I have discussed a possible need for biologics in the future if we see any negative changes. Now, though, I look at the future with a realistic eye that my UC has gifted me: I know that surprises will come, but that fear will not prepare me for them. The only things that will are empathy for myself and commitment to my own self-care.
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