My Crohn's Diaries

Well, things have gone downhill since my last post. After starting Prednisone two weeks ago, nothing got better. Nothing. Unlike my last flare-up, I didn’t respond at all to the steroids at all.

I tried reaching out to my doctor’s office a week ago to see what else we could do, and, because my timing is the worst timing in the world, my doctor was out of the office for the week. And the covering doctor said, in the most dismissive way possible, to just keep doing what I’m doing until my doctor came back.

The problem was that this flare-up was and continues to be the most painful one thus far. It’s a pain that makes me double over. A pain that is hard to breathe through. A pain that makes me think something structural is terribly, terribly wrong. After the pain woke me up every night for a week and I got no help from my doctor’s office, I took the plunge and went to the ER. It wasn’t that I thought it was dire enough to need it, but I really had nowhere else to go. I was stuck and the thought of continuing how things were was horrifying, so I had to do something.

Thankfully, the ER was empty and as painless as it could have been. They did a CT scan, some bloodwork, and hooked me up to an IV for fluids while I waited. In the end, they ended up prescribing a higher dose of Prednisone and a pain medication to tide me over until my doctor came back. Which, really, was all I was wanting from the covering doctor, but for whatever reason, he didn’t feel like he could do that for me…

I feel a little stupid for going still, but the increased dose and pain meds have helped some. I can sleep through the night. I can eat some. I am managing.

My doctor came back today, and she told me I may have to go into the hospital for IV steroids if things don’t improve. I’m trying to stick it out until my infusion, so I reached out to my nurse to try to move that up.

After a call to the pharmacy to make sure insurance would be okay with it, she was able to move me from next week to this Friday. So, really, I just need to make it through a few more days. Which, after weeks of this, is nothing. Right? It’s nothing.

And I really, really don’t want to go to the hospital and get stuck there for Christmas. I don’t know how it works when you go in for IV steroids like that, but from what I’ve read online, you usually have to stay for a few days. My timing is exponentially bad. Even the ER doctor told me that last week. If it had been any other time, if my doctor had been in town, if, if, if.

Sometimes, with an illness like this, I feel like I tolerate a lot more pain and suffering than the average person. But then, also, I feel like my pain isn’t enough to warrant getting emergent help. It’s like I’m constantly stuck between needing more assistance and being too ashamed to ask for it.

I don’t know the point of this post, if only just to document what’s happening. In a few days, I’ll do my infusion and then go from there as I always have. One day at a time, right?

Happy holidays to you all! I wish you a healthy, calm holiday season this year and a wonderful new year ahead!