Well I've survived my first (and hopefully last!) ever gastroscopy! Yayy! Anybody squeamish might want to skip the next paragraph...
I will admit that the gastroscopy was really not pleasant. Someone shoving something down your throat, through your stomach and into your small intestine and pulling bits out isn't exactly natural though, so it's not really surprising. They took a lot of biopsies (nobody panic- everything looked fine- just to check for H Pylori, the cause of stomach ulcers), which is seriously unpleasant, a kind of pulling sensation that makes your bowel spasm. Yuck. They say open (giving instructions to the person controlling the grabber) and you think urgh not again and then they say close and you wince as you feel your stomach/bowel ripple. The procedure really was quick though, although it felt quite a long time when you're going through it, I doubt I was in the room more than 10-15 minutes. They pumped quite a lot of gas in which makes you feel bloated and the anaesthetic throat spray makes you feel like you can't swallow and is uncomfortable; it really stings making you cough and splutter when they spray it on. You feel a lot of pushing and pulling and you can feel the scope moving around inside you which can be really quite uncomfortable, but I wouldn't say particularly painful as such. Not sharp pains anyway. I have been in pain since though, I assume from the biopsies, but I have also been eating chocolate which I know my body doesn't like at the moment, so that could also be the cause (gastroscopy was for nausea, weight loss and abdominal pains). They've been quite severe sharp crampy pains, but eased once I napped for an hour or so. I don't know whether it's normal to get quite such bad pain afterwards, I don't remember it being mentioned, so it might just be me..
It's been 36 hours and I'm still experiencing some abdominal discomfort (although not necessarily exclusively resulting from the procedure, it is why the procedure was being done after-all, but the abdominal pain has been worse than normal) and a really, really sore throat (which is definitely caused by the procedure); every time I swallow it's like swallowing shards of glass.
I chose to have the gastroscopy done with just local anaesthetic spray, no sedation, because I don't tolerate drugs very well, several of my medications reduce activity in the central nervous system so may well interact and it's just too dodgy to risk with my CFS the way it is. So I was fully aware throughout. It was the right decision for me. I knew it would be unpleasant- and it definitely was- but at least I felt fine immediately after the procedure (just numb and then sore/in pain- but that would happen with sedation too). If you're anxious then go for sedation, but if you think you can cope without then go in knowing it will be horrible but over quickly and you'll be fine. You will gag, it will feel horrible, but you'll survive!
Fasting for it was not fun. Ironically I have had literally no appetite at all for months, yet when I was unable to eat for 5 and a half hours (4 hours before, 30 mins being consented/having the procedure, 1 hour afterwards), it felt like torture. I have to fast for 6 hours for my ultrasounds next week but thankfully they're at a better time of day so I'll sleep through some of it and I rarely eat before midday anyway, so it shouldn't bother me. I have no idea how I'm meant to gain weight when they keep making me fast for things though?!
Thankfully everything looked 'reassuringly normal' according to the doctor doing the gastroscopy, which is definitely good to hear when the gastroscopy request was put through as 'urgent', although I never did think they would find anything seriously concerning. I was hoping they'd find something though because I'm desperate for my abdominal problems to be something fixable- I really do need to be able to eat well and put on weight, things have got pretty desperate.. I have ultrasounds next week so hopefully either my biopsies from the gastroscopy will come back positive for helicobacter pylori (which is treated with triple therapy- 2 antibiotics for a week and an acid suppressor) or something fixable will show up on my ultrasounds. I will be very frustrated if everything comes back 'normal', although I know it's a possibility, because it could be due to ME or IBS.
In terms of a general medical update I've had a couple of appointments since I last updated you all and have a few more lined up.
I'm being referred to a falls and syncope department because of my dizziness and collapses- my consultant thinks it could be related to blood pressure problems/dysautonomia-type issues. I've been advised to increase my fluid and salt intake until then. It seemed like I'm being referred to the CFS specialist in the department so at least they'll have a good understanding of my condition. Hopefully it will be something that can be helped.
My vitamin D level is being checked by one consultant and all the usuals (iron etc) by a different consultant. I ended up being needled twice in four days, resulting in a very sore, bruised arm. Humph. I do realise it's for my own good rather than their amusement though. Will wait and see whether anything shows up. I've been off supplements for a while now so a deficiency is a possibility, although everything was still fine last time they were checked.
I finally saw a GI person- at last! They think there's nothing serious going on but I've obviously had the gastroscopy, mainly to check for ulcers, and have some ultrasound scans booked for next week, mainly to check for gallstones.. We'll see.. He's said if everything comes back clear I should be referred by my doctor for a colonoscopy to look at my large bowel- nice... Hopefully it won't come to that but if it does, then I'll just have to deal with it. He came across quite disinterested, which makes it quite difficult to give a full and accurate history. I'm not sure the problem was fully and accurately understood, but we'll see- either they'll find something or they won't and if they don't then I'll try to explain further and see whether any other tests are then indicated.
I've seen my dietician recently and am supposedly on an unreal schedule of nutritional supplements- 1 VitaSavoury, 1 Fortisip and 3 ProCal shots in addition to everything I'm currently eating every single day. That's about 900 extra calories.. And we're not talking short-term; 6 months was mentioned. I was advised that even if I'm able to start eating well again I have to stay on them.. My BMI is now not much above 14 so things are getting to the point where I'm practically in the situation of having force feed myself these or get tubed. Ugh! The massive problem is that I'm really not tolerating the supplements at all. My nausea and abdominal pain flare up and they upset my stomach; I really do want to gain weight but they just make me feel really really unwell.. It puts me in an impossible situation.. My dietician and I keep missing one another's calls over the last few days but hopefully we'll manage to speak soon and discuss where to go from here.. So frustrating!
I'm still in bed a lot. I'm not actually sleeping brilliantly at the moment (sleep schedule is a mess), but am needing to rest a lot. I'm struggling with fatigue and dizziness in particular. Trying nutritional supplements and the gastroscopy has meant my abdominal symptoms have been a lot worse but hopefully they'll settle down soon. I feel really ill at the moment to be honest- I don't know how to describe it but I feel really run down and just unwell in general. It's like having a bad infection. Things are physically really difficult and I'm just not managing as well as I used to.
I've stopped attending Uni for now- last week ended up being my last week. I just couldn't do any more, but it was basically when I planned to suspend studies anyway so it worked out ok. Thankfully stopping has given me a bit of energy to be able to say goodbye to people- I know I'll crash a bit when I get home from all the meals out etc, and my throat is worse from all the chatting today, but I really, really don't care. I've got literally months ahead of me to recover. My mum has been staying with me for a few days because of my gastroscopy so has sorted my room here out which is great- one of those jobs that has really needed doing for a long time but I just haven't been well enough, so that's 1 less thing for me to worry about. Just my room at home to sort out to fit all my stuff from here into now- almost certainly another job for my poor long-suffering mum!
I recently had a really unpleasant appointment with one person (external to the university) who is meant to support me who basically told me to just give up and not bother to finish my course- I was furious and felt very unsupported, but I did then have a very very supportive meeting with someone in my department the same day who made me feel much better about everything and I was made to feel wanted and supported. They understood that it was all difficult for me, but also understood that time out was totally the right decision. I was praised for dealing with everything in a mature and professional manner which was nice. I felt very much like they truly want me to progress and get to the end of my course which will make returning feel easier. The people who organise my disability support have been really lovely and made this difficult period easier too.
Things are being sorted for me in terms of the suspension of studies; people are talking about me in my absence which I always hate, but I'm very appreciative that someone in my department is helping to sort things out. It seemed like they're likely to allow me to do exactly what I have asked in terms of resuming my course which would be great. None of any of it is ideal, but I know it is necessary.
Over the last few days I have been saying my goodbyes before leaving my university city and moving home for a while (although I will be travelling back for all my medical appointments).
It will be a long 8 months at home but will hopefully bring about much-needed improvements in my health, which has to be my priority right now. Saying goodbye to everyone has been hard- I've had really lovely cards and gifts from my Uni friends- I've been made to feel very loved! It's been a really difficult time, and certainly not without tears (!!) but I know I've made friends for life and will keep in touch with people; I'm looking forward to being back with them all in September (although I'll be in a different group and year group *sad face*) and I will catch up with people when I'm back up for appointments which will be nice!