Tag: health

TL;DR: Ajovy made my head better by some margin, but it doesn’t help my overall situation much. Because of the background headache that so far nothing has touched.
Continue reading Health Update – May 2023

Good news and bad news!

– had my yearly routine control for Crohn’s Disease in the hospital last week

– my calpro (faecal calprotectin) is somewhat elevated, so looks like I have inflammation in the bowel. But my symptoms have been stable for a couple of years now (better than ever before). No change in medication is deemed warranted right now, but it’s coming up on 3 years since my last coloscopy. So a new coloscopy is scheduled for September/October. Not yay, but needs must.

– iron levels are bad again. They’re giving me another iron infusion, a bigger dose this time, on next Monday. I got the first one last March, in May the ferritin was 80 and now it was low again, only 23. I can’t take iron tablets anymore; I’ve been taking them practically 20 years for about 10 months every year, and my ferritin kept lowering. The iron tablets as well as the liquid version also started to cause worse diarrhea. It took a few years of me pushing and talking about the low ferritin and my symptoms but finally last year and now, I didn’t even have to ask for a iron infusion – it was offered to me! This is good!

– learned that much more research has been done in the recent years in much more IBD patients because IBD is becoming so common, and that the danger of colon cancer in Crohn’s Disease patients isn’t as high as previously thought. Only two times more likely than in a healthy individual of same age. And actually the chances of doctors catching it quickly are much better because of the regular colonoscopies people with Crohn’s Disease have to go through. He said that the chances of me dying from colon cancer is practically zero because everything suspicious seen in a colonoscopy is biopsied and removed so cancer won’t have a chance to develop and spread. The doctor said that if I die from colon cancer, it’ll be because they the doctors and the hospital have royally fucked up. So that was new information!

– in bad news, my right inner thigh started to hurt on Sunday :/ It’s been “feeling” for about a year, but not actually hurting until now. The bad thing is that the pain is exactly like my Mom described her pain before she underwent the hip replacement surgery a few years ago. Good thing is, there’s a chance that it’s Crohn’s Disease related – apparently, often the big joints in the lower extremities can start to hurt when there’s active inflammation which I have right now. I had a bad bout of Crohn’s symptoms on Monday, the day after the thigh started to hurt. Anyway, if it is related to Crohn’s, it’s my understanding that there’s no physical damage on the joint? And that proper medication for the Crohn’s Disease can make it go away. Or that it might just go away on its own – I think I saw somewhere that it might go away in six weeks if it’s Crohn’s related?

But. I’m obese. And being obese is a risk factor for actual hip arthritis. Age is as well, but I’m only turning 49 this year and it’s my understanding that’s quite young? I also have Diabetes and autoimmune disease which are both risk factors so who knows why. I haven’t yet contacted health care about this – I want to get the iron infusion done first, which is on Monday. I also want to see if it hurts all the time, and what activities make it worse and if any make it better. Because they are going to ask about that anyway. But my inner front right thigh has been hurting all the time since Sunday, most of the time I can walk normally but more or less in pain. Sometimes after sleeping, I limp a little for a bit because the pain is so bad. Ibuprofen helps, but doesn’t remove the pain completely. Only time it doesn’t hurt is when I’m sitting on my couch, and in some positions on the bed after a while. I’ve started to do the exercises I found online for hip arthritis.

This is again just what has been happening the last 14 years – whenever things settle down, or even have gotten better, some fucking new health problem crops up. My body is really just rotting away, isn’t it? If this thigh thing turns out to be not related to Crohn’s Disease and is permanent – I just might throw a tantrum like a two year old….

Also, got my 5th COVID-19 vaccine last week – the bivalent one! 😀 

This week has been a trying week!

On Sunday my period started two days early which – okay, good at least it’s not late which is used to be a common occurrence so I rather they start early than come late. But means that I have steady stomach pain for however many days I bleed and that’s felt like an extra cruel punishment on top of everything else ever since I got sick in 2008. Then on Tuesday Crohn’s Disease decided to join in on the fun and cramp really well! I was SO much pain for two hours before the pain meds kicked in – cold sweat, white face, weakness and feeling like I’ll faint, I got it all 🙁 Then after the pain meds kicked in, pain gone but felt still weak and weird and because it happened in the evening, a little of the weird feeling continued the next day too. This happens sometimes during my period since I got the Crohn’s diagnosis, so luckily I knew that the meds would help and I just had to wait for them to kick in so I didn’t really worry about whether I should go to the hospital or anything like that like the first time it happened.

Then on yesterday (Thursday) a migraine and lower back pain, and last night again a mild migraine and today Friday also the same lower back pain. I don’t get why the back pain all of a sudden – I used to have bad lower back pain in my 20s when I had too heavy periods and even in between, but when we got me bleeding less the back pain got better too and I’ve only gotten a little bit of a back pain during my bleeding days for almost two decades now. But yesterday and today it was bad again like it was before, although it has eased up the more I have moved. I don’t think I’ve pulled anything, but maybe I’ve slept in a bad position or something? I don’t feel it when I lie down but when I get up in the morning, I feel shooting and nasty twinges at first and then it starts to ease up but doesn’t go completely away as I move about. I hope this back pain doesn’t become a feature outside my period – I don’t want to have to deal with anything more – at least, not any more pain! Fingers crossed.

Other health related things… after I had the iron infusion in March, I noticed that my eyes focus better and don’t get what the optician and my doctor told me was “age sight”: that eyes get tired faster and it’s hard to focus them when you get older. I used have many times a week trouble focusing my eyes even first thing in the morning even though I had slept through the night. This went on a couple of years and nothing helped, not even getting new glasses. But after the iron infusion, it stopped happening until it started happening again now in September. My hand joints also stopped hurting after the infusion, and haven’t restarted yet. I don’t know what my ferritin is currently – in May it was 80, and in March before the infusion it was 20. At least ferritin of 100 is recommended for IBD patients in literature here, but that directive isn’t followed at all. I’d been trying to raise ferritin by taking oral iron supplement for years but it didn’t help. I didn’t think the infusion helped with the exhaustion, but maybe it did a little bit – because the last couple of weeks I’ve been terribly exhausted again, like I hadn’t been for a little while but I can’t swear the last time was before the infusion. It also could just be the legal stuff I’ve been dealing with (re: the adoption which I’ve written in another post) the last two months, and my Mom’s health stuff as well. It’s been mentally hard since the start of August so that could a major reason for my exhaustion too. Because I’m a spoonie and don’t have enough energy even for normal days, anything extra, whether it’s physical or mental, can hit me hard and mostly it seems to show as exhaustion and tiredness.

Sometimes I feel bad about always posting bad things when I do these health updates, but the truth is that I don’t have good weeks. My weeks are “okay” usually, and “bad” more often than I’d like. When days and weeks are “okay”, there’s nothing to write about. They’re just full of just routine and usual typical things which in my case, are either neutral (like going to grocery shopping, paying bills etc. etc.) or some kind of negative (the adoption thing, or when I have to deal with bureaucracy of being sick and/or unemployed etc.) or major or minor pain (I have pain every day, just the intensity and location varies)… things that don’t stand out of the rest. I’m so limited in what I can do due to pain and exhaustion that I don’t do things like go to concerts or movies or see my friends weekly that’d be positive to make updates about. I’m mostly limited to just being home on my own.

Good days happens sometimes but often I realize it actually was a good day only the next day (because if a day has been good but then I get a migraine in the late evening, well that doesn’t feel much like a good day anymore then because you mostly just remember the throbbing head pain) when I see that I had no notable headache the day before. And good day doesn’t mean I did something out of the ordinary – it just means I had notably less pain than most days. A truly good day is when I have no notable pain *and* I see my best friend or Mom, and these days are so rare – maybe only once or twice a year now. So “okay” is my reality the vast majority of time but it does make for boring updates. But actually I’m grateful for “okay” because back when I didn’t have Crohn’s Disease diagnosis yet and my headache/migraine was much worse than it is now, “bad” was 100% of the time for many, many years. So I’m okay with “okay”. Although I hope for more good days!