Yesterday, I found myself in the gastro doc's office for two and a half hours. We went through in detail my history of eating disorders, veganism, vegetarianism, surgeries, childhood afflictions and allergies, family history. The nurse practioner who spent so much time with me reviewed the results from my last colonoscopy. She told me all the things that could be causing my distress. She told me that the last gastro doc eyeballed my gut but didn't actually do a biopsy for celiac disease. She told me sometimes part of my stomach gets stuck in my esophogus. (!) She said they needed to start over. I began trying to hide my anxiety attack.
She ordered labs to look at my kidneys, thyroid, liver. She ordered an upper scope and colonoscopy for next week. She asked for all sorts of things too gross to list. She gave me a sheet on colitis. She told me a list of other drugs that might help, one of which was steroids.
I started to cry.
I told her one of the ways I manage my eating disorder history is to try very hard to stay in a ten-pound window that is healthy and realistic. I told her I knew it's possible my mother is right and my ED contributed to my current suffering, but that talking about it like that makes me feel like I somehow did this to myself on purpose, which brings back memories of people thinking I did anorexia to myself on purpose, that I am to blame for everything bad that happens to my health. I told her I'm scared of steroids.
She dropped her papers and rolled herself over and touched my arm. She told me she understood and that would be a last resort.
I understand how stupid it sounds to be so afraid of weight gain. Welcome to the wonderful world of ED recovery. I write this here not because I want to scare my family into thinking I'll relapse, but because I work so very hard not to relapse, and I'm always actively managing what I put in my body with that in mind. It's important my doctors understand that if they have choices about which medication to give me, they should not give me the one with a side effect of weight gain. I've been shocked at how willy nilly doctors can be about not telling their patients this pill or that pill could make you gain forty pounds, by the way. It's true that everyone's body responds to things differently -- something I am learning more and more as I get older -- but still. If I were a doctor, I would tell people things like that.
And she said since I'm getting a colonoscopy next week, it won't make too much a difference to eat gluten. She suspects it's not gluten because the situation is so severe, but only a biopsy can tell for sure.
I went a week without eating any gluten at all. It was actually not as hard as I thought it would be. Eating at home was a snap. Eating out was a giant pain in the ass, but we only ate out one meal in that week I was off gluten. More and more, that's the case for us, especially in the summer. It's so expensive. I didn't realize how expensive eating out was until my husband lost his job last fall and we drastically cut our food budget. However, sometimes it's really fun and necessary and being gluten-free while eating out sucks eggs.
She also bumped up my Welchol to three giant horse pills in the morning and evening to see if that would have any effect. She said at this point, it's just a process of elimination until we figure out what is causing my problems. As I stared at the chart listing all the things that can be wrong with my digestive system, I was pretty overwhelmed. And I felt pretty old.
She asked me, though, to please let her keep trying to find the problem, since I admitted I'd only gone to two gastro docs once each because what they gave me didn't help. I asked her if she thought that was weird because clearly I had a problem, and she said, "You'd be surprised what people will tolerate until it becomes their normal."
Isn't that an interesting sentence? I am so stealing it.
So now that I have absolute, positive verification that no, what's happening with me is clinically significant, otherwise known as ZOMG YOU ARE A FREAK OF NATURE, I'm promising myself I'm going to figure out, at least, what is causing these issues and see what I can do to bring it down to a low roar. Even though the doctor's office called me in a panic this morning because my insurance is changing again and I don't know the new number and won't until July 1. And my colonoscopy is on July 3.
Last night I ate a huge plate of broccoli and mac & cheese. Hello, gluten, my long-lost love.