Introduction to my Intestines

Fun fact about me: I have Crohn's disease. I started having symptoms in 2000, when I was 18; I was diagnosed in 2004, a week before I graduated college. My health has been up and down ever since - although mostly up. Overall, my Crohn's has had relatively little impact on my life, compared to some other people I've met and other stories I've heard. I've sat in treatment rooms across from people who have ports installed in their chest, which is the only way they can get nutrition into their bodies; I've known people who had to eliminate entire food groups from their diet. For me, it's mostly been about taking a lot of pills and navigating a lot of medical bureaucracy.

The big exception to that was 2010. In January of 2010, I started having Crohn's symptoms: abdominal pain, nausea, loss of appetite. Over the next several months, I switched medications, had colonscopies and small bowel exams, went on a liquid diet for two months, had a PICC line installed and was fed via IV for two months, and finally had two-and-a-half feet of my small intestine removed. It took nine-and-a-half months to get it all wrapped up, and it was one of the hardest times of my life. 

Since then, things have been pretty calm, health-wise. Last December, my husband and I thought it might be a good time to start thinking about having kids, and so we went to my doctor to talk about what that might look like. (One of my medications, in higher doses, is used to terminate pregnancies, so I obviously can't get pregnant while taking it - on top of that, we needed to make sure that my body could handle being off of my medications for the time it would take to have a baby.) So I had a colonoscopy and a MR enterography to check out the state of things. 

As it turns out, the state of things was not great. I had epic levels of inflammation, an abscess, a couple of fistulas - all signs that my current medications weren't working. 

The kicker was: I wasn't experiencing any symptoms. I felt fine. Which the gastroenterologist I saw up at the hospital told me was "shocking". And it was scary to me that so much could be going wrong with my body and I wouldn't have any idea.

So we decided to put me on a new medication, give it a few months to see if it would take effect, and then check again.

(This is actually a super familiar process for me - one of the constants of my version of Crohn's.) 

I had my follow-up colonoscopy and MRE in July - the good news was that the abscess and the fistula seemed to have gone away. The bad news was that there was still a lot of inflammation, and possibly a stricture. Which means that we need to either increase the dosage of my current meds and I'll probably need to have surgery again. 

Having surgery again is not so bad - it's not ideal, because ideally I would go ten years between surgeries. (There's a finite amount of small intestine for them to take out - once we get to that point, then I'll get an external small intestine to carry around with me, which is one of the things I dread most.)

But it's more the waiting and seeing that I struggle with. Obviously having a baby is on hold. I'd like to get a new job, but it doesn't make sense for me to look, because I want to keep my same insurance plan until my surgery is done. 

And now I'm having symptoms: abdominal pain, nausea, loss of appetite. I'm tired a lot because it's hard to eat enough to keep me going. It's gotten a lot worse over the last two weeks.

Another fun fact about me: I do roller derby. (I still struggle with the verb - saying "I play roller derby" seems deceptive, since I'm not actually skill-cleared and so I don't actually get to bout. "I practice roller derby" sounds like I'm doing something meditative and yoga-style. I don't know - still working on it. But I go to practice, and I learn, and I love it - I'm obsessed with it. And I'm slowly getting better.)

So I'm way more active than I was in 2010 - being physically active has never been something I wanted to do, or was able to do consistently, before roller derby, but now I skate 4-6 hours a week, plus weight training with a personal trainer twice a week. 

It's SO HARD to do that when I can't fuel myself the way that I'm used to.

This past week was the worst it's been in a long time. I had to skip all of my derby practices, and one of my weight-training sessions, and I really struggled to just get through my work day. 

It's so funny to me - how long I've had Crohn's disease, and I still forget the effects that it has on my life. 

Things I've Remembered This Week:

1) I have my life structured with just enough wiggle room for my normal life - I have enough space and time and rest built into my normal routine to get me through when I am not having symptoms. When I am having symptoms, everything needs to be re-evaluated.

2) My skill of just pushing through things is not helpful, particularly when my symptoms are active - unfortunately, my Crohn's is not something that will just "get better" or "go away" if I don't respond to my body's signals. Things will just get worse until I *have* to stop, which I don't really want to do. 

3) I'm a part of a lot of things now that I *want* to be doing - in 2010, there were times that it was almost a relief that my symptoms were flaring up, because it was a great excuse to not do things (like going to the gym, eating healthy food, leaving the house, etc.) that I didn't really want to do. But I don't feel like that now. I *want* to go to practice; I *want* to go work out with my trainer. So it's on me to make sure I treat my Crohn's symptoms in a way that lets me keep doing those things.