Just realized it’s been over six months since my last health related update here, and figured it’s time to make one to keep track.
Heard back from the colonoscopy today – and looks like we finally, after 4 long years, may actually really have a true diagnosis! It’s not 100% definitive yet, but the pathology indicate Crohn’s Disease – the inflammation is mild so apparently it’s uncertain because of that. So they’re going to put me on corticosteroids now and if that reduces the chronic diarrhea, apparently that will confirm the diagnosis and then there are treatments.
There’s no cure to Crohn’s Disease nor do they know what causes it, and there and certain elevated health threats come with it. But if it’s that – I’ll finally have a name for what ails me, a real illness, treatments to be tried that perhaps can make it better and that makes all the difference! … But still not getting all up and jumping for joy – this may turn out to be another false start, after all, again. Better to just wait and see what effect the corticosteroids have on me. But yeah, at least all the damn work I did preparing for the colonoscopy didn’t go to waste; I’m happy for that!
Had my third colonoscopy yesterday. This one took the longest, an hour and I think 20 minutes. Considering how my symptoms have been behaving the last several months and that I had a bad spout of diarrhea on Saturday and had to take a lot of Imodium to get it stop and then had no bowel movements at all before starting the fun fun fun thing on Tuesday night (3 days later which is not-rare now after taking Imodium these days – a few months ago, I needed to take it daily so it’s been changing lately and difficult predict when and how often), I suspected that the fun fun fun thing hadn’t cleansed the bowels completely… Unfortunately this turned out to be true So they they had to do a lot of flushing going in, and that’s why it took somewhat longer because of that. I told them how I’d done the fun fun fun thing and it was correct but just hadn’t been enough. I used Moviprep which I used the first time and it worked great then.
There definitely is some irritation/inflammation going on in one particular place of my large intestine (even I could see it) but they couldn’t say what might cause it by look of it. Also there was somethings that I can’t remember in my small intestine that could or could not be related to the large intestine irritation/inflammation, so yeah something’s definitely going on – which we’ve all known for years now. I just hope itsfinally something they can actually the finger on and treat, and not just say again that despite everything nothing particular was found and so it’s Irritable Bowel Syndrome or bile acid malabsorption or maybe a mixture of both and I just need to keep going on like I have been. Then I’d have gone through all this for basically nothing
The staff was very nice and competent, I was conscious the whole time and could follow the process in a monitor most of the time. The man who wielded the tube, often told me what I was seeing on the monitor and when they were taking biopsies from the irritated part and it bleed, he explained that bleeding was one of the signs of inflammation and then later showed me what healthy part looked like. It only hurt in one part and the nurse gave me a pain injection immediately which also worked practically immediately, after that there was it only was uncomfortable, especially when both the nurses had to press down hard on my belly at one point. That was the worst but it wasn’t pain.
I’m not getting my hopes up – been there, done that too many times. I’ll just wait for the results and then see what’s what
In case you’ve noticed & wondered why, I haven’t been posting much anything latelythat needs weeding out the bad caps in the last several weeks, or wallpapers/icons at all. The reason is:
My 6 year old main monitor – which is a big external one, and the one I solelydo all work on everything on because it’s comfortable to work on for hours at/with unlike the laptop monitor – broke down about a month and a bit ago, and I bought a new one pretty much right away – HD, widescreen, 1920×1080 native resolution Acer monitor. Unfortunately, my trusty but also 6 years old Spyder (it’s so old, it’s not even called Spyder but ColorPlus) can’t calibrate it at all – its technology is too ancient. I couldn’t afford to buy the current generation Spyder4Pro until this week, which I did today and I can’t wait to for it to arrive so I can get back to normal as far as computer stuff goes. I tried but for the life of me, just like the old monitor, I can’t calibrate the new monitor manually at all to use comfortably for anything more than about 15 minutes a time without straining my eyes – it’s just way too bright. Graphics work is out of the question, everything looks too faded. So, it’ll have to wait a proper calibration with the Spyder. Side note: weirdly though, it took me about two days to get used to the widescreen dimensions of it and now it feels more natural than any other monitor I’ve ever used before even though I haven’t used it that much yet.
In health stuff, my Thyroxin dosage was increased from 75mikrog to 100mikrog a day – all went well while I took 4 pills (4x 25mikrog) because I had just started the damn bottle so I of course wanted to use them all up, and only then start the new prescription bottle which is the same dosage but in one single pill (1x 100mikrog). I don’t know if it’s the 100mikrog pill or what, but I started taking it two weeks ago, and I haven’t been sleeping well since then It’s like I’m half awake, half asleep when I sleep and I can’t say for sure if I slept at all. End result, I’ve been feeling kind of off and listless, not wanting to do much of anything. Including computer stuff.
I had to go the dentist today, and the sleep thing has gotten so bad, last night I took one of those mild sleeping aid pills I have left over from last year’s fiasco with Questran and Triptyl to help me fall asleep, because I knew if I didn’t chances were I’d be awake most/all of the night and finally fall asleep like around 5-7am and be just too exhausted to go to the dentist. And it worked – it was the second night of honest to god honest sleep I’d gotten in two weeks. The other one was last week, when I finally got so exhausted after about of week of that half awake/half asleep/was I sleep at all? thing that finally actually slept.
If this sleep thing doesn’t let up, I’ll have to start looking into it. I’ve had bad spells before, so I’m not quite worried yet – just bloody annoyed! Particularly because whatever sleep I ever do get, is always accompanied by dreams. So the quality of sleep isn’t as good, or normal, as it could be.
I had the check up with the gastroenterologist today – the end result that I get to go in for a 3rd colonoscopy. Oh yay. Calprotectin which has been all up and down over the last 3,5 years is up to around 1150 now which is my highest ever (before it was 650) and the gastroenterologist says it can’t be because of byle mal-absorbson. 1150 sounds high but I’ve read and it can be several thousands – even over 10000 – in “serious” bowel diseases such as Crohn’s Disease. So I doesn’t overly worry me, more like makes me curious.
The colonoscopy may or may not reveal a cause – he says the Calprotectin indicates could be a tear in mucous membrane somewhere in the bowel, but wondered about the 2010 colonoscopy didn’t show anything if so because diarrhea had been going on for a little over a year at that point – based on the previous colonoscopies. And then, even though a second capsule endoscopy may be in order if the colonoscopy doesn’t show anything. Even though a capsule endoscopy was just done in February. Fun fun fun. Argh!
Summer has been surpringly normal-as-far-migraine-goes so far – owed completely to the fact it’s hardly be able to be called summer. Seriously, why couldn’t this kind cold, rainy summer happen for those two years when I was mowed over by chronic migraine and chronic stomach cramps and/or diarrhea and chronic tiredness 24/7/365 when felt like I was dying every minute? No, it had be the summer to end all summers then. 17 hot days this year; 44 then. Blargh.
In other health related news – I think… I am not dreaming anymore. It’s been about a month now, that I haven’t woken up from sleep and remembered the dream and/or several dreams from the night. I remember that it used to be like this, before the dreaming started in spring of 2009. Now it feels new, and odd, and wonderful. But really odd. I can’t wait to be able to sleep more nights like a normal person, finally! :D Feels like the quality of my sleep is maybe better now? Than with constant dreaming, when I often, especially at first, felt like I lived another day while I was sleeping. Which no wonder, because my dreams are always of the action/adventure type.
I wonder what made it stop though. I’ve always been of the opinion that Thyroxin started it – the dreaming started 3 days after I took it for the first time, and never stopped until now. My GP upped the dosage some months ago (April or May), so I wonder if that has anything to do with it. Going have the levels checked again for my September appointment with the gastroenterologist, and I hope if Thyroxin needs to be adjusted again, it won’t affect the current no-dreams thing going on. But.. no dreams! YAY!!
I haven’t slept well the past two nights – hardly at all. I still dream every night, and when I sleep badly, seems like I remember the dreams a lot better than when I sleep well :/ Feeling tired and unenergetic, want to go and try to sleep but I know I won’t be able to and that it’s best wait for the night. Which is bloody 9 hours away :/
I’m trying to read Liza Marklund’s latest I got from the library, Panttivanki (Du gamla, du fria). I’ve liked all the other books by Marklund I’ve read, but I’m having a lot of problems with this one – I’ve been trying for at least three weeks, and I’m only at 81 pages Normally, it’d take me maybe three or four days to read the entire damn book. A week at the most!
The main character is a Annika, an investigating journalist. She investigates and exposes human trafficing, corruption, crimes, abuse of power, injustice, evil, the truth, that sort of thing. She’s not a snob, interested in maintaining the correct image or putting out airs. She’s not political. Her husband, Thomas, is all of those, and more.
(The rest is behind the cut because of spoilers for Panttivanki (Du gamla, du fria)).
I’m sick of coughing. If I have to have to the flu, why can’t I ever have the runny nose version anymore? That doesn’t make my head feel like I’m having a migraine attack for days on end even though I’m not, like coughing all the damn time does :/ And the cough in my experience never goes away as quickly as the runny nose version
Two notable things, wanted to have a record for the future…
Migraines started threateaning to become chronic again starting December, so Topimax was added to my migraine prevention meds. Yesterday I got to the full maintenance dosage, and results should be starting to show by mid-March. I think it’s been better for a week or so now, but could be coincidence. Crossing my fingers.
RE: chronic diarrhea… Questran didn’t help as it was hoped. 3 doses a day, compared to 2, made no difference at all. So I was scheduled for a capsule endoscopy (a camera pill), and that is tomorrow. So no eating today at all but I can drink as normal (with some limitations as to what). Luckily I don’t have to do that absolutely horrible empty-your-bowel-operation-that-is-worse-than-colonoscopy-itself!
The operation is done in the neighboring town’s TYKS hospital instead of in my home town, guess it was faster scheduling it there, so I get to get up at 5.30am, catch my local bus 6.05am, catch the-bus-to-the-neighboring-town at 6.35am and be at the hospital at 7.30am. Then it’ll take 7-8 hours for the camera pill to travel its course in my body, take about 50 000 (!) photos of my bowels, and then I get to go home. And it’ll come out the natural way in the next three days. Hopefully. If it doesn’t, needs to be removed either via colonoscopy or laparoscopically.
… I wonder what it says about me but I’m actually more anxious about the bus trip to the neighboring city than the procedure LOL
The same sleep issues continue that I detailed in my previous health post (http://www.crystalfires.net/2011/11/09/health/). It hasn’t gotten any better
I’m now pretty sure it’s Questran which is causing the problem. I’ve got a phone call appointment with the gastroenterologist today, and unless he can come up with something regarding the problem, I’m going to go off Questran to see if it solves it. It’ll be two weeks on Wednesday, and I need to start sleeping normally again. I also worry that if the sleep problem goes on for much longer, it’ll start to have an effect on the migraine. I’m not going to risk that. So I’m gonna push for the test that will tell for sure if it’s bile acid malabsorption or not. Then if it is, we can try work with Questran again, to find a dosage that allows for normal sleep and still alleviates the diarrhea problem – and cut down some on Imodium – even if it doesn’t end it completely.
EDIT to add:
The gastroenterologist doesn’t think it can be Questran causing the sleep problem. He said it could be that one of my other meds, Triptyl (an antidepressant which is used among other things, to treat insomnia – but which is also used, at low dosages, to raise pain threshold as in my case), of which am taking a low dosage for migraine prevention every night, isn’t working as it should due to interference from Questran and that I’ve essentially been going through unplanned withdrawal. I think this is a possibility because the sleep problem didn’t start immediately – I’d been taking Questran for nearly two weeks by then, without any side effects.
I’ve been taking Questran 4 times a day, as per instructions, and the gastroenterologist said that it might be that that schedule, although standard, doesn’t work in me quite as normal, and that taking Questran that often may be preventing Triptyl a chance to absorb normally. So what we are now doing, is change it so that I only take Questran only once a day, in the morning, and Triptyl in the evening. Which puts the time between the two medications to minimum of 12 hours. Hopefully that will be enough for both meds (and all my others!) to do their thing.
So. Yet more experimenting is needed. He also described me a course of light sedative which hopefully will help me to sleep until Triptyl reaches working levels again. If the sleep problem continues despite the changes, he said then I’ll need to see my GP about it. Which should work out well, because I’ve got an appointment with her in 4 weeks and by then I’ll know if the sleep problem is over or not.