This one was actually created by IHOP. (I think there are a couple of them.) Pancakes are free there today. People can donate to charities that help children battling illnesses. Haven't been to IHOP in a long time. I should have made pancakes for breakfast...I have that banana caramel pancake mix still. Pancakes can be pretty versatile. They can be sweet and/or savory. My faves are blueberry, chocolate chip with bananas, cinnamon roll, spinach, green onion, and more. I often like them by themselves, but syrup is good too. There's a variety out there for that as well. I currently have maple praline syrup that I've put on it sometimes. I hate globs of butter on it. It doesn't need that sort of thing.
Went to my gastro appointment on Thursday. The Digestive Health Consultants center has an endoscopy and colonoscopy department right there in the same building. I thought that was cool and convenient. Much closer than the last place I went for that. The intake form was interesting. It was on in an iPad. Handy, except for when I had to sign some of it. They should have given me a stylus or something. My signature ended up looking weird. I'm glad they had 'other' as an option for the 'sex' part.
I think I like her a lot. She has a good sense of humor, yet is serious about what's been going on and my concerns. I've only seen one other actual gastroenterologist with an MD. I've seen a nurse specialist and physician's assistant in between. They weren't very helpful, and even my new gastro was surprised about how they treated me. That first gastro had a very heavy accent, and I felt bad that I had to ask her to repeat things so often. She was good at first, but stopped communication with me at some point. The new gastro doesn't have an accent like that and speaks clearly. Doesn't dumb things down too much, yet asks if I'm not familiar with something.
She's very concerned about my throat, too. She diagnosed me with dysphagia. That means difficulty swallowing. In my case, it's painful as well. Hard to eat, drink, and speak. I'm surprised by my voice being affected. It's increasingly becoming hoarse. Feels like there's always something in my throat. Dysphagia's not just an annoyance. It can cause a lot of complications, like it's easier to choke, some people need their throat stretched, some have to have a feeding tube, etc. I was told to eat as normally as possible, soft foods are best, take smaller bites, and chew more.
She didn't tell me this face to face, but in the after visit summary, she gave possibilities on what it could be. It tends to be a symptom of something else. Here are those possibilities: esophageal Crohn's, peptic stricture, eosinophilic esophagitis. We were speculating whether it could be related to Crohn's, so it wouldn't surprise me if it was that type. I don't think it would be a stricture. Looking up the last one's symptoms sounds an awful lot like what I'm experiencing. I remember I had issues with my eosinophil (a type of white blood cell) count when I first started having symptoms of the colitis. So, it's not too far a stretch to think that I might have something related to that. I've read that you could have a normal blood test result for the eosinophil count and still have this. They apparently gather and attack the esophagus, and usually don't show up with that test.
She also wrote that I still have colitis symptoms despite being on Lialda. She took me seriously with that and even said there's obviously something going on. She said she could tell just by looking at me and doing a short physical exam. I mentioned my stiff painful joints and muscles, and she said that was another sign that the colitis may be active. Especially if it's getting worse.
She asked me if I've ever been tested for Celiac disease. I haven't. She said we should test it to make sure, since I could have colitis and Celiac at the same time. Some patients are like that. I hope not. I don't want to give up gluten. I love it...
She ordered a bunch of blood tests. About 7 vials of varying size in total. I almost couldn't stand to sit there for so long. Most of it was for Celiac testing. That took longer than the others. I have most of the results back, and they're all normal. A few are much higher or lower than my personal norm, but within the range. Not sure how to take that. For the specific ones they use to detect Celiac, so far, they're within normal range. However, 2 of them are really low. They say for both of those if it's below 20 units, then it's not positive for it. One of those is at 3 the other's at 6. The 3 one especially looks weird. I added that one's result into Patients Like Me's charts, and they flagged it as too low. That concerns me a bit more. I don't want to be deficient in those antibodies. They didn't flag it on the test results themselves. Seems like something to bring up with her. Looking at these results as is, it seems like I don't have Celiac at least. I think there are a couple more tests I'm still waiting on.
She agreed to doing an upper endoscopy along with the colonoscopy. She said at the very least the only way to see what's really going on with my throat is to scope and take biopsies of it. I also read that that's the only way to diagnose eosinophilic esophagitis. There is no reliable blood test for it. She'll take a look at my stomach/duodenum, since last time it indicated something was going on with it. (They said it was a certain gastritis that is common with people who have Crohn's.) She'll look at and take biopsies of part of my small intestines not only to see if there are signs of Crohn's, but to also check for Celiac. I've read that even if blood test results are negative, if it's just starting/mild it'll only show up in biopsies or looking at it with a scope. So, yay! There's still a possibility...I don't want ee, Crohn's/colitis, and Celiac all at once. Makes it even scarier. She'll also check to see how my colon is doing. If it's not flaring right now, the scarring must be worse or something. I'm having awful intestinal cramping often now. A plus for the endo/colonoscopy is that both will be done by her. In the past it was a different gastro that did them. Not my personal one. This way she can have a more in-depth/personal look.
I'm glad she agreed to letting me do the Miralax/Gatorade prep. However, theirs is a bit different than last time. Instead of just 4 pills of dulcolax in addition to that Miralax solution, she wants me to have 2 bottles of magnesium citrate. (1/2 a bottle one day, 1/2 the next, and a full the day after that.) It's a liquid laxative. I've read that it's palatable but not good. Some people have said if you get the lemon it's like concentrated salty lemon juice. Some have said it tastes like a strong version of Sprite without the fizz. They also said it's really powerful stuff. Most only had 1/2 a bottle. I'm a bit scared of it now. Why do I need something so powerful in addition to the Miralax? Seems like overkill. At least they have me on the liquid diet for a shorter time. 1 1/2 days rather than 5 or 6 days. A lot less to prepare for on that front. 5 or 6 days were really difficult after the 2nd day. It'll be the same amount of Miralax (14 days worth) and Gatorade (64oz). That's a lot of fluid. The Miralax part of it gets difficult towards the last couple of glasses. Maybe I didn't mix it enough last time? We'll see. It's nothing like that vile Golytely stuff, though. That was like the worst thing I've ever tried to ingest.
I've been having such a difficult time sleeping with all the pain and other symptoms, which makes me get up later than I'd like. I think I said something similar on here last time, but that seems to be getting worse. Hard to get motivated while feeling like this, too. I'll try going to bed earlier, even if it's painful. I'll take more extra strength Tylenol before going to bed, as well. I have been doing things like studying Korean, editing Shadow's full-body drawing, and a little editing of Alliance.
Someone on AVEN read my last blog post on here and messaged me. It was an incredibly long message that looked almost like a college research paper. She was in her 60's and I don't think she was used to online forums and how people usually interact on there. She also listed 'alpha female' as her gender. Lots of mentions about being a feminist and a 'retired' minority advocate in her profile. Got the sense she was a terf just from that. I had commented on a post about feeling conflicted about International Women's Day when you're an afab trans person. I agreed to the op's first post. She found me through that comment. She thought I had conflicted feelings towards my body and was 'confused'. Nope. I'm not confused and don't really have conflicting feelings about my body. My body's mine, but there are parts of it that shouldn't be there. I like pretty much everything else about it. It makes me me. It's pretty interesting to learn about the inner workings of it. I even like looking at my blood test results. It was cool to hear and see my heart in an ultrasound. I love that stuff, actually. She said how sorry she felt about my health. (Used odd wording and I don't think she knew what those words meant...) Went on and on about how she knew better about saving her partner than the doctors did. Also, about how awful the UK health care system is. I don't know...I've heard that it's actually better than ours. She offered to help me figure out my nutrition stuff. Yeah, I really need unsolicited advice from a stranger who doesn't really know much about my condition. I told her that I'd rather trust my medical team and maybe (a big maybe, but more likely) people who have IBD as well. She mentioned IBS by the way when talking about IBD, seemingly to think they were the same. They're very different things. I couldn't believe or actually follow half of what she said. I have a feeling she not only wanted to give me poor health advice but to tell me I'm really just a 'confused' woman. She did say she 'battled' with her own gender and realized it was because of child abuse and trauma, and she believes that's also what causes diseases like IBD. Sure...That's not right at all. Abuse and trauma had nothing to do with me being dysphoric and having colitis. They just happened. A good way to tell people it's all 'in our heads' and you must have been damaged in some way before. It's all your own fault for having an autoimmune disease. Not cool, and looking at some of her other posts, that's the message (on both) she keeps trying to push even if it has nothing to do with the topic. I blocked her on there when she practically ignored what I said in my message to her. She replied with more weird stuff. I hope she doesn't hurt others, though.
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