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10 Things This Ulcerative Colitis Patient Wants You to Know

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Like any disease, every case of ulcerative colitis is different with each person. No one has the exact same symptoms, responses to treatments, side effects or outlooks on their health before and after diagnosis. What’s best for my treatment and maintenance can be a disaster for one of my friends dealing with his or her own UC. However, there are a handful of things that do seem to run similar between my network of inflammatory bowel disease buddies and myself. I won’t speak for everyone dealing with poopy issues, but there are 10 things I want the general public to know, which I’m sure a few of us can agree on.

What is Ulcerative Colitis?

1. I am not pooping every time we use the bathroom. Sometimes I just really have to pee. Inflammatory bowel disease does affect my urgency in both departments, but every bathroom trip isn’t for going number two.

2. Usually when I’m too tired to socialize, I’m really f*cking exhausted. Ever heard of the Spoon Theory? A woman with lupus created this to explain how, with an autoimmune disease, you run out of “energy” (spoons) much quicker than someone who does not have an autoimmune disease. I choose to divvy up my spoons to have enough to get a run in five or six days a week, because that keeps me healthy and happy. And unfortunately, I cannot always be the person who cranks out a run and still has a gut happy enough to go out afterward, or even later that week.

3. I get really, really bloated, and I’m self-conscious about it, so don’t point it out. At first glance, I may not appear to be noticeably bloated, and with today’s message being overwhelmingly to love your own body, I’m not supposed to even care. However, it is very noticeable at its worst, to the point where I could potentially pass for pregnant. And I do care – so when people close to me make comments on it, it bruises an ego that will be mending for the rest of its life. And yes, that has happened to some friends and myself.

4. I can still indulge in food. I’ve lost count of the times I’ve gotten a very concerning but can you eat that? look, and most of the time the answer is yes. I can still find ways to indulge and enjoy what I’m eating, and I’m by no means a squeaky clean eater.

5. Stress really can be a trigger. I carry stress in two places: my gut and my low back, but I would argue one affects the other. When life throws a curveball, my gut can react. So I’m not overreacting when I say that a situation can give me a painful stomachache. It’s a very real gut check for me.

6. Ulcerative colitis affects me emotionally. I’ve had this thing for more than half my life, but I still get crushed by it. Whether it’s feeling hopelessly linked to bathroom locations or insecure in social situations, living with something that can jump in a negative direction at any moment can weigh on you. I listened to an outstanding speech delivered by a mother of a son with inflammatory bowel disease, where she shared her angst in realizing her 10-year-old son was already experiencing lows that 10-year-olds should not feel. It’s a real thing.

7. I joke about it because it needs to be funny sometimes, but I don’t expect everyone to do that. I’ve always argued that acceptance of this type of autoimmune disease goes through the normal five steps of grief, with “acceptance” meaning that maybe you can actually joke about bodily functions. But that means everyone needs to experience the other four steps before they are ready to offer up poop riddles. I understand and respect that; I make jokes to hopefully show someone else that life can be OK  – even funny – even when you can’t get there yet.

8. I fart a lot. There’s no way around this one. My boyfriend and I have a joke that “It’s OK, it makes your tummy feel better.” He says that to me every time I still feel embarrassed about lighting up a room. I’m sometimes mortified, but I’m never sorry.

9. Dating with this disease is really hard. I’ve been in pain for the first six months of every major relationship. I hold the farts in, I wait until the most private possible moment to use the restroom, I push the food limits for the sake of not getting into it. It’s not exactly first-date conversation. Even though I’m fully comfortable discussing my condition with others, when you’re trying to establish a foundation with a brand-new person, talking about bodily functions isn’t on my list. I’m so lucky to have an amazing, caring boyfriend who survived that first half-year with me and still stands by my side, even when I’m in the fetal position on the floor.

10. You’re not alone. For all of those out there reading this, nodding their heads in agreement, adding 10 more things to this list that I missed, you’re not alone. I understand the pain, physical and emotional, and I get it. The back of the bathroom door can be a lonely view, but I promise I’ve shared that view, talked about that view and maybe even embraced that view as part of my beautiful life as an ulcerative colitis patient.

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Thinkstock photo via Pavels Sabelnikovs.

Originally published: May 17, 2017
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