I'm nervous about my new gastroenterologist appointment on Thursday. I haven't seen anyone for my colitis in a year and a half. Just looked that up now and it's longer than I remembered. I should see someone at least every 3 months (according to the CCFA) to monitor it. That's just to check on the disease, not necessarily how the medication is affecting me. That can vary more.
Looking back at it, I apparently stopped Azathioprine in December of 2017. It wasn't metabolizing anymore. Been on Lialda ever since. Again, since no one has been monitoring me, I don't really know how helpful it's been or if it's metabolizing. I have felt like I've been flaring since July. Lialda was supposed to be the safest temporary med. My next options are biologics like Humira and Remicade. They're taken either with self-injections or infusion. These are heavier and more potent meds. I'd prefer to stay away from the self-injection ones. I get a weird thing every time I see my own blood or other health related stuff (shots, speaking about organs, etc.). It's a syndrome I can't remember the name of, but I have passed out from it. I don't need that every time I do it. Can't control it either. With the infusions you have to wait a few hours, and it's at hospitals usually. That can be a pain in different ways. I don't seem to have a problem with IV's, as long as I don't see them put it in.
I've noticed new extrintestinal symptoms, too. Most patients get them at some point, and can be a sign that they're flaring. I thought most of these symptoms were just kinks to work out or from fatigue. However, they haven't let up and, in fact, have gotten much worse. They're starting to pile up creating a snowball-like effect, and it's scaring me a bit.
I made sure to make a list to bring up with her so I don't forget. In July, a weird deep butt pain started. Leg muscles from my knees up started to feel sore at the time every time I laid down or stood up. (Still does.) A year ago, I started coughing up weird hard balls of bloody mucus. (Yeah, gross...) I didn't think much of it until that became more frequent not too long ago. Now, it goes up my throat without me coughing it up. Prompting me to spit it out immediately. Never feels like it all gets out. It wasn't a normal thing for me before this.
Roughly a couple of months ago, my jaw started to ache. It's gotten worse in the last couple of weeks. Every time I try to open my mouth to eat, yawn, etc. it hurts. The joints seem to be swelling, too. About a month ago, I started having a dry sore throat. I thought I just had a little cold, and that I'd need to wait it out. It's still there. Feels worse now. It's not bad enough to make me cough all the time. However, it hurts to swallow, food feels weird going down it, feels like I need to clear my throat every time I speak, etc.
Not long after the sore throat started, my neck was so sore and stiff I had a hard time moving it, then that suddenly went away. About a day later the joints in my hands, wrists, neck, knees, one hip, and feet were painful and stiff. They haven't eased off since. My hands have been the worst. It's harder to grip things and even wash my hands. My jaw and other areas are cracking/popping more often, too. Not only that but a couple of weeks ago muscles from other parts of my body (not the leg ones I mentioned) started to feel sore and weak. Fun combo.
About a month ago, I started feeling a searing pain around my eye sockets or outer eyelid area. Not in my eyes, but the outer skin. It's worse around my right eye. The pain has intensified in the last few days. Realized today that there's a slight red rash on parts of both areas. So, it's somewhat visible. I'm not just imagining it. I do have my eye exam next week, which should be interesting to see what they say, as well.
I'm wondering if the throat things are specifically related to the colitis. If I have Crohn's (most people I've seen have leaned towards this), it could be affecting it. Crohn's can happen anywhere in the digestive tract, including the throat. It can travel, too. They did notice that my stomach and duodenum were slightly affected in the first upper endoscopy in 2015. It could have traveled up. It wasn't nearly as bad as my colon at the time, so that's what they focused on. They weren't sure if the disease was affecting them or something else was going on. I'll ask my new gastro if I could have an upper endo along with my colonoscopy to check. The gastro I had when I was about to have my 2nd colonoscopy (2017) never answered me and didn't request it. Despite asking her several times. She had several issues, but knowing what they saw the first time, I would think it'd be logical. Even my 1st gastro suggested it when we were talking about future colonoscopies.
It's been affecting me more this week. Takes even longer than usual to go to sleep, then I end up staying in bed later than I'd like. Makes it a little more difficult to get stuff done. I'm trying to be kind to myself about it, though. Also, I've felt too tired to wash my hair lately. Did it today and felt like passing out after I styled it. Made me really dizzy for a while. At least, I got that done and feel a little better.
So far this week I've made it to the 4th level of Basics 2 in Duolingo's Korean course. Almost done with that unit. Also, started typing out some of the sentences in Korean with the translation in Notes on my phone. Noticing more patterns, might try using speech-to-text to see if I'm saying them right, and more. Might be really handy. I have been editing more of the full-body drawing of Shadow in Photoshop. Finished the back part of his hair. Edited more of Alliance.
Finished watching Radiant. It was an odd time to end the season. They mentioned at the end that there will be a 2nd one. It'll be back in October. It ended with Seth leaving Artemis for Caislean Merlin. He left Melie and Doc behind. It looked like Grimm's going to secretly follow him.
I plan to get better about being more balanced with my nutrients and still stay within my calorie range. According to MyFitnessPal, I'm usually far below my goals for protein, fiber, fat, saturated fat, cholesterol, potassium, calcium, and iron. Sugar and carbs vary a lot. Either half of where I should be for each or slightly over. Not sure about other nutrients, because that's what they show if you're not a premium member. I was surprised by some of them as I went through. I've heard many people have issues with having too much fat and cholesterol. Not making all of these goals, might have something to do with how I feel now, too. I have been told I need more protein, at least, than most healthy people because when I flare I tend to not absorb it well. It's hard to get all of them without going over the calorie range for the day...That's why I'm going to look more into foods naturally high in these, and stuff I already eat as well. Like, the tuna salad sandwich I make occasionally has a ton of protein, calcium, and iron. It's low in calories, too.
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