Conquering Colitis | Week #6

(I meant to post this 6 days ago… oops!)

A little under 19 months ago I was diagnosed with ulcerative colitis. UC is an inflammatory bowel disease which affects the colon and rectum. It is one of the least talked about physical diseases because of the nature of what it is. In its most basic form it causes cramps and frequent urges to use the bathroom and in more extreme cases it involves surgeries and colostomy bags, so if I’ve grossed you out enough I won’t be offended if you stop reading, in fact I’ll never know, but if you want to know why I’m talking about my colitis 19 months after I’ve been diagnosed keep reading, but that was your warning that this topic isn’t very neat, let’s say.

I started this week in Budapest, Hungary with my mom, but as we ended our tour at the Great Synagogue, the largest synagogue in Europe, I started to feel a familiar feeling in my stomach. It was just a dull pain, but I knew it was the beginning of a symptom of a colitis flare, something I normally I usually only experience once a month. I hoped that with a trip to the bathroom the pain would subside and it did, but not for long. As my mom and I walked back from the Shoes on the Danube, a memorial to the victims shot into the Danube by arrow cross militiamen during Nazi occupation, I felt the pain again, this time a little stronger.

My mom and I were headed to Fisherman’s Bastion while the weather had heated up to the high 80s. I turned to her and told her I thought I was having a flare. My mom also has colitis (it runs in our family my brother has colitis as well and my dad has Crohn’s), so I knew she’d know what I meant and offered to stop walking. Everyone’s flares can be a little different, but mine usually involve cramps (always pretty painful, sometimes debilitating), urges to go to the bathroom, a suppressed appetite, and diarrhea (sorry, I warned you it’d be gross).

By the time we were about 5 minutes away from our destination we found out we’d have to take a few flights of stairs up and decided to stop and buy cold water bottles. By this point the dull pain had increased and I needed to sit down. I drank about half the bottle in the few minutes we were sitting there. My colitis flare had made me pretty anxious, which happens occasionally, because basically I was in a ton of pain and I didn’t know how to make it stop or when it would be over, but I powered through and made it up to Fisherman’s Bastion. We stopped at the first place we saw and I ordered water and a coke since I could feel my blood sugar dropping. We each ordered a caesar salad, but my suppressed appetite didn’t allow me eat most of it. Even just sitting down usually helps the pain subside. After walking around the pain had not only returned, but had increased, and so had my anxiety.

Apparently not being able to spell names is universal for Starbucks workers

My mom and decided to head back across the river to St. Stephen’s Basilica Square since she was meeting a Michigan alum there a bit later in the day. We went into the Starbucks on the square which had seats and air conditioning, which was important since the temperature was now in the mid-90s. We ordered and sat in cushy seats in the basement of the Starbucks at this point it was literally all I could handle. My mom was a little nervous about leaving me since the flare was so painful and anxiety induced at this point that I was teary eyed. I sat in the Starbucks for 3 hours and went to the bathroom 2 times before I felt a little relief.

The previous night we had booked a tour at Parliament and I was determined to be up for it and I was fine for the whole tour (it was only 45 minutes). I’m glad I was able to do it since it was very worthwhile, but as we were leaving I felt the need to go to the bathroom again. Not only that, but the pain was back. It wasn’t as bad as it had been in the Starbucks, but still not great.

By the time we got to the place for dinner my anxiety was back and it was accompanied by nausea. I ordered plain pasta which got me a lot of judgment from the waiter, but I was at the point where I didn’t really care I just wanted the pain to stop. (When you’re having a colitis flare there isn’t much you can eat since you’re supposed to avoid dairy, vegetables, fruit, nuts, fried food, or anything else that might cause stress to your digestive system. I usually just end up eating rice).

After dinner my mom suggested we walk over to the Marriott that was next door and see if they have any meds. We were able to buy Advil and Imodium (basically the opposite of a laxative), which helped immensely.

Since then I’ve been dealing with minor flares here and there. Mostly cramps that pass in a few minutes or urges to go to the bathroom. It isn’t something that’s fun to deal with, made much harder by being in places where you don’t speak the native language or by flying frequently, where you can’t necessarily sit in the bathroom for a while. The hardest thing for me is the unpredictability of the disease, I never know when it’s going to hit and when it does I don’t know how severe it’ll be or how long it’ll last. I’m just hoping next week is a little bit smoother.

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