Questions People Ask Me About My Indeterminate Colitis

Talking with people when they ask you about your health can be weird. Especially when they ask:

How can your doctors not know what you have?

Indeterminate Colitis can be tricky. People who have Indeterminate Colitis show signs of both Crohn’s Disease and Ulcerative Colitis. My inflammation skips around in my colon, I don’t have any granuloma’s and I don’t have any inflammation in my terminal ileum. Which has led to my doctor to just leave my diagnosis at Indeterminate Colitis until further notice. There’s also speculation in the GI field that Indeterminate Colitis is possibly a third form of Inflammatory Bowel Disease but there needs to be more research done on it.

Are you on the Crohn’s Diet?

Well, no. I’ve never heard of that. And also recently found out that there’s no such thing as a Crohn’s Diet. There are a lot of different diets that people with Inflammatory Bowel Disease are on but there’s not actually one called Crohn’s Diet. The only thing I really do is avoid fructose as best as I can. And Thai food. Along with popcorn. I haven’t been motivated enough to try just one specific diet. I instead have chose to do food diaries and find my “trigger” foods.

Are you going to stay on Humira while you’re pregnant? It’s a pretty nasty drug.

Yes, Humira has some nasty side effects. So far it’s working for me. With relatively few side effects. It’s the only drug that works for me besides steroids and I don’t want to be on that while I’m pregnant when I do actually decide to have kids. So I can either stay healthy during my pregnancy by staying on the medications or run the risk of going into a flare and put the baby and myself at risk. But in the end this decision will be up to me and my doctor.

You’re so young.

I get that I’m only 26 and have this incurable autoimmune disease but there’s children who get diagnosed with it. Most people with IBD are diagnosed before the age of 35. Being young doesn’t change anything. It probably makes it harder because people don’t expect the young to be sick. And having an invisible illness does not help that.

I really need to get better about having answers to these questions in real life. Which is why I wrote this blog post. Because when I was asked them I was thrown for a loop. I don’t really get asked these questions that often and sometimes it takes me a while to figure out what exactly I want to say about it. I feel that it’s important to have an idea of this before hand so that I can help raise awareness for IBD.

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