I finally heard back from my gastroenterologist’s office this afternoon–while I’m at headquarters in Boston, of course. Apparently I’m anemic, and my white blood cell count is pretty low. That could explain a lot of the fatigue and weakness symptoms I’ve been having. My doc’s putting me on iron. I’d been on it before, but he took me off it because my levels were fine and he was afraid it was messing with my digestive system. But I’m guessing with the bleeding I’ve been having, especially without the iron supplements, made me anemic again.
The WBC count is more worrying. It’s almost certainly because of the 6-MP. I have a love/hate relationship with this drug–it’s caused me all kinds of icky side effects, but it’s also given me more control of the UC than any other drug. And now I may have to go off it. He’s not going to take me off it just yet; he wants to get repeat labs in two weeks and go from there. I wasn’t having as many problems on 75 mg–it wasn’t until it got upped to 100 mg that I got really ill–so we’re both hoping that means going back down will solve the problem. But if it’s caused bone marrow toxicity, I may have to go off it totally.
I’m SO FRUSTRATED. The only drug that’s kept my immune system from ripping holes in my intestines might now be killing my bone marrow. If I go off it, I’ll probably get sicker with the UC, but obviously killing my bone marrow isn’t an acceptable scenario either. All I want is a drug that controls my illness without killing me. WHYYYYYY does that have to be so far out of reach?
Saw my gastroenterologist today. I thought the appointment was supposed to be with one of the NP’s in the practice, but he apparently took over. He was PISSED when he found out about the crap his office staff had tried to pull with the appointments. He told me if they try that again, I should tell them I have ulcerative colitis and need to be followed closely, and if they still give me problems, leave a message for him and he’ll personally schedule me in.
He said he’s just going to keep me on the Entocort, since it’s not causing me any problems to be on it but it causes tons of problems when I try to go off it. It’s such a relief that he’s not going to keep trying to get me off it–I’ve dealt with a lot of doctors who just didn’t care about the side effects of med changes; they’d just tell me to keep doing whatever they said no matter how bad it got.
He was also very concerned about the fatigue and weakness, and he agreed that the 6-MP was the likeliest culprit. He also is concerned that it may be causing liver issues, so I have to go get a bunch of labs drawn on Monday after the convention. In the meantime, he’s having me go down from 100 mg to 75 mg. He only wants to do one med change at a time, but if decreasing the 6-MP causes more problems, then we’ll either increase the Humira to every week or switch me to Remicade.
It’s just so nice to have a doctor who’s so responsive and doesn’t blow me off because I’m crazy. He’s literally the best doctor I’ve ever had. I wish he could be my primary care doc too. Or maybe somebody should just clone him so he could be everyone’s doctor in every specialty.
I haven’t posted in a while, I think. I haven’t had much to say–pretty much all my time and attention is going toward the convention, and that stuff would probably be either incomprehensible or boring to most of you. Suffice it to say I’ve been busy. At least 3-4 hours of calls a day, plus training some of our whips. Somehow I’ve also become tech support for our region, which is kind of a joke. I’m decent with computers, but not great. Tonight I solved a guy’s problem with the mobile app for Android…but that’s not very impressive because all I did was google it.
I had a nice birthday. I went out canvassing for a couple hours, and then I came home and watched The X-Files and ate mango-passion fruit sorbet. I got a package of gluten-free/vegan peanut butter chocolate chip cookies from one of my friends from the trauma unit, and another friend sent me a package with really cute shoes, a top, a bag, and some yummy tea. There was some kind of shipping issue with my bike, so I haven’t gotten it yet, but I think it’s on the way. With my luck, it’ll come when I’m at the convention. But I think my roommates will be here, so it’s all good.
I’m anxiously waiting for my GI appointment on Thursday. I’m not even sure who I’m seeing from that practice–my pushy nurse friend was the one who ultimately got me an appointment that was before August. And it’s a good thing, too. The pain’s been pretty bad. It comes in waves, so at least it’s not constant…but when it hits, I’m doubled over and incapacitated. I’m only seeing blood occasionally now, but I’m still pooping bright orange pretty frequently and leaking a lot of the time.
I think I’m going to push for them to switch me to Remicade. Whoever it is probably won’t want to do it without talking to the doctor I usually see, but I’m hopeful. I’m taking my pushy RN friend, so she may be useful in that regard. I’m also going to ask for pain meds to get me through the convention and until we can get me on some meds that work better. I rarely ask for pain meds; in fact, I don’t think anyone at this practice has ever written me a script for narcotics. I’d been using a two-week supply they gave me from my ER visit back around Thanksgiving; that’s how infrequently I take them because they make me dumb. But I can’t be curled up in pain for the convention.
I’m also going to talk to whoever it is about the possibility of reducing the 6-MP. I really think it’s responsible for the horrible fatigue, and I know it’s what’s causing the nausea. Reducing it does worry me because it’s the only thing that’s gotten me anywhere close to remission, but now it’s making it almost impossible to function. I’m hoping that switching to Remicade (or potentially vedolizumab, if it’s available this soon) will get this shit under control enough that I can reduce the 6-MP. Not flaring doesn’t do me any good if I can’t get out of bed to enjoy it.
I used to think I didn’t care about my appearance that much. As long as I didn’t smell bad and my clothes were clean, whatever. I told people I failed girl school because I never learned to care about hair, shoes, or makeup. I had that privilege because I was pretty. I didn’t realize at the time what a privilege that was.
Now I care because my hair is falling out. In large clumps. I can’t pull my hair up in a ponytail anymore because you can see the bald spots. I put off washing it because I know the handfuls of it in the bathtub drain will upset me. There are people who have literally never seen me with my hair down until a few months ago. They comment on it, and I laugh it off by saying I woke up late and didn’t have time to put it up. Then I slip off to the bathroom to make sure I’ve arranged it so the bald spots aren’t too noticeable.
It’s the UC meds. Particularly the 6-MP. I started losing more hair than normal when I started it at 50 mg back in August, but it wasn’t too bad. Then in December, my gastroenterologist upped the dose to 75 mg when I flared up. Since then, it’s been pretty drastic. In fact, I’m pretty sure the sweater I’m currently knitting has as much of my hair as it does of the sheep’s. Currently, I can hide the hair loss a lot because it’s winter in Massachusetts, so hats are normal. But it won’t be winter forever.
If it were putting me into remission, it might be okay. Sure, I’m not as sick as I was when this first started in May…but I’m still sick all the time. I still turned down an invitation to apply for a job I’d love and be awesome at because I’m too sick to handle it. I’m still up 4, 5, 6 times a night to poop. I still had to turn down half the food I was offered at the food bank because almost everything contains foods that make me sicker.
I’m seriously considering asking my gastroenterologist if he will just take my colon out. I’m not quite sick enough that he’d suggest that, but I just can’t take much more. I act like it’s fine, like I’ve adjusted to it even though it sucks. Sometimes I think I have, and maybe I have in a lot of ways. But not really because right now I’m falling apart over it. I’m just so tired of everything about this. I know a colostomy causes all sorts of difficulties of its own, but at the moment, it seems preferable. And I can’t tell if that means I’m crazy or not.