Ups and Downs

The end of 2018 brought some unexpected possibly colitis-related symptoms. I guess that’s how it goes with these chronic illnesses: things are going smoothly and you get lulled into a sense of stability, and then your body starts doing weird things again. Around Thanksgiving, I started having some digestive symptoms. I wasn’t sure if it was a colitis flare – if it was, it was much milder than my usual flares. Around the same time, I learned my gastroenterologist, who I love, was leaving. I scheduled an appointment with another gastroenterologist for mid-December and figured I’d wait until then to discuss my symptoms.

But my body had other plans. I had a small lump in an awkward place, which turned into a large lump accompanied by mild fevers. I wasn’t sure (and still am not totally sure) whether or how all of these things were related. Since I’m on Entyvio, which suppresses the immune system, I was a little worried (ok, a lot worried) about having a fever. I ended up seeing my primary care doctor, who said the lump was an infected abscess. He got me into see the colorectal surgeon right away (talk about an anxiety-producing doctor’s appointment), who drained the abscess and prescribed antibiotics.

The following week, I saw my new gastroenterologist, who is great. She said we need to keep an eye on the abscess to make sure it doesn’t turn into a fistula. A fistula is when an ulcer extends through the bowel wall and forms a tunnel to another part of the intestine, another organ, or to the skin. If I do end up with a fistula, it actually means that I have Crohn’s disease and not ulcerative colitis.

At that point, I was still having the mild digestive symptoms I started with, but antibiotics also tend to cause similar symptoms for me. My doctor ordered tests of my Entyvio levels and antibody levels, and I’m still waiting for the results. If my Entyvio levels are low, I’ll probably have to get my infusions every four weeks instead of every six weeks. I also may need to have a flexible sigmoidoscopy to see if I’m having a flare. Since then, my symptoms have improved a lot, so I’m not sure what’s going on. I’m still having some cramping throughout the day, but that’s it.

To make things even more confusing, my right ankle also got pretty swollen the week before Christmas and I had a tender spot on my left leg that was a little puffy. I saw my primary care doctor, and he said it was possible that the ankle swelling was tendonitis caused by Cipro, one of the antibiotics I was on. He also thought my colitis was just causing some inflammation throughout my body.

Unfortunately, it’s just been one of those times where my body decides to do a bunch of weird things and then I get really anxious trying to figure out what’s going on and imagining worst case scenarios. I wish I had some good advice, but I just try to pause and work through it one thing at a time. In this case, I wasn’t sure whether to contact my primary care doctor, but since I was in the process of transitioning to a new gastroenterologist and I wasn’t sure if all of these symptoms were colitis-related or not, I looped him in. That turned out to be a good move, since he was really helpful in making sure things got taken care of.

I wish I was starting 2019 on a more stable, healthy note, but I’m grateful that I’m still feeling pretty good and that I have a good team of doctors keeping an eye on things and helping me figure out what’s going on with my body. I’m trying to get back into exercising after a few weeks of not feeling great, and trying to be patient while I see what answers the next month brings (or maybe additional questions). It’s reminded me that sometimes I need to slow down and take care of myself and make sure I’m listening to my body. Maybe that’s not such a bad way to start the New Year after all.

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