14 Oct

So I have Crohn’s Disease. In case you don’t know what that is, it’s one of the most undignified of the auto-immune diseases. It doesn’t have the fame of arthritis, it hasn’t inspired one of the more asanine diet fads of the decade. [Sidenote: The gluten-free diet sucks. It’s hard to be nutritionally sound and you’ll someday miss pizza.] With Crohn’s Disease, for some reason your immune system recognizes input into the digestive system as poison, and narrows and ulcerates intestine (though it can happen anywhere from mouth to anus). Most commonly, it affects the terminal ileum, which is the last part of your small intestine.

They don’t know what causes it, there is no cure, and the treatments are underwhelming and dangerous. But less dangerous than the progression of the disease. Potentially. It depends on the severity of your disease.

I didn’t believe it until the last year, but Crohn’s Disease is a Big Fucking Deal. I thought it would be an embarassing inconvenience and maybe some planned surgery someday. Ah, the ignorance of youth and/or denial.

In my case, symptoms started after a monster bout of mono the summer after my first year of college. Just a constantly upset stomach, and I was always really anemic. I also lost a lot of weight, but that had a lot to do with the increase in activity level and gross dorm food. I kept my frequent bathroom visits a secret, no one knew. I once mentioned my frequent vomiting and bathroom trips to the health center doctor, and I was sent to the nutritionist for an eating disorder consult. 165lbs and complaining of frequent vomiting. Same doctor also suggested a rare red blood cell shrinking genetic disorder that affects primarily those of Jewish or Arab descent for my anemia. I’m not either. Clinical judgement WIN!  

Sometime during junior year, I got a stomachache that sent me to the ER. I can only describe the feeling as a crunching feeling, like my stomach was trying to eat itself. They couldn’t find a cause. Gave me some vicodin and sent me home. It happened a few more times and I was sent to a gastroenterologist. The gastroenterologist did an upper endoscopy, found an ulcer, and wrote me off as a hypochondriac student that drank too much. When I called saying the nexium wasn’t helping, the nurse wouldn’t return my call.

I went along, tra la la. Graduated, got married, moved to Texas. Visited a doctor who I now know immediately wrote me off as a hypochondriac, but seemed concerned enough at the time. I was given the blood test for celiac disease and one of the markers came back positive. She discouraged me from seeing a gastroenterologist to confirm it with an endoscopy since it was diet controlled anyway. I listened. I stayed on the diet nearly a year.

That marker I had was the least specific, and also shows positive in Crohn’s.

I finally went to see a gastro because I wasn’t getting better. He did a small bowel follow through, which showed narrowing in the ileum. I had a colonoscopy which showed inconclusive lesions, but the diagnosis of Crohn’s Disease was made after a gene test confirmed it. This was in November 2007.

He tried Pentasa, which failed. Then in February, he put me on Remicade, which will get its own post later. I got better then not, better then not, screwed with the dose, bla bla. Then almost a year later my hair started falling out and I was crippled with arthritis and yeah, no more Remicade. I was put on a trifecta of pharmaceutical awesomeness: Prednisone, Methotrexate and Humira. I was put into some kind of remission and ended up just on Humira and my hair grew back and et cetera. I felt well enough to get the blessing of my medical team to get pregnant.

Crohn’s was the least of my pregnancy risks, the clotting disorder considered to be worse, so I was seeing a high risk OB anyway. In spite of a number of perplexting but unrelated complications, Crohn’s wise? I felt pretty good. Better than ever.

The thing that we didn’t pay attention to, and didn’t and wouldn’t have been seen with testing, was that toward the end, the baby kicking really hurt. I chalked it up to a lowered pain tolerance, the doctors chalked it up to my guts being sensitive, and it hurts some people.

This will also be another post unto itself, but at 36 weeks pregnant (8 months) (pregnancy math is weird), my bowel perforated. Humira and the hormones had managed to mask what should have been the mother of all flares. Three and a half feet of diseased intestine was removed. What happened after that, another post still.

I had a brief affair with Cimzia, but the reaction was similar as with Remicade, so we broke up. I’m now on a high dose of Imuran, and we’ll see if it works. I have no idea as I can’t tell a flare from normal now, because normal is decidedly NOT. I’ll have another colonoscopy sometime soon to see, since my symptoms (ie: pain) can’t be trusted.

That’s where we are. Though I’ve only been diagnosed for three years, I’ve had the disease eight or nine years. I’m hoping and hopeful that the road ahead is smoother.


One Response to “Gutsy.”

  1. Kristi July 20, 2011 at 2:52 pm #

    CrohnsOnCampus ‘retweeted’ your last tweet, so I followed you, came to your blog, and then just read like… 20 posts. What a journey. Ugh! I’m 31, have two kids, and my Crohn’s started when I was pregnant with my 2nd. I was finally (finally!) diagnosed in January, three years later. Just started Pentasa.

    Nice to meet you. What a story.

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