Think my Crohn's has taken a turn for the worse

Fever last night, fever today (38C or 100.5C). Not horrendously high, but still enough to make me feel like sh!t. Stomach has been killing me. The visit to the eye casualty this morning was horrible: I could barely sit still waiting for my meds, I was in so much pain :-/

Anyway, I got a better doctor than last time, who did more tests and got an opinion from the consultant. They were considering oral steroids, but I overheard the consultant say that eye drops were safer. Apparently my eye pressure is okay. The ridiculous glare I get from lights at nightime and the sun is apparently caused by the inflammatory cells in my eye, not a cataract (as I was beginning to fear). My Crohn's apparently makes the uveitis more stubborn and harder to treat than in somebody who doesn't have any other issues. I will also probably get a cataract sooner than if I didn't have Crohn's/uveitis, i.e. say 65 instead of 85. Great

So I've been given yet more freaking steroid eye drops, but have to take them for double the length of time, e.g. 6 drops a day for 2 weeks, 5 drops a day for 2 weeks, etc.

I dunno what to do about the Crohn's. In a sort of way I was hoping I'd be prescribed oral steroids, total bandaid though that is. If this doesn't get better in the next couple of days, I will need to make an appointment - can't go on like this.

Thank you Betty Sue! I hope your son is doing okay.

Stomach is still hurting - it's just about tolerable when I'm lying down on the sofa. Trying to hold off on painkillers until the evening. Gonna just drink fluids for today I think and not eat anything solid.

Hey NCOT ,

Know we have been in a few threads together , sorry to hear your suffering at the moment !

Your plan does sound good , the worst flare I had I fasted for 3 days and I think it gave my guts time to mend slightly. Well done on pushing through!

Stay strong 👌

NCOT: I am a married man, but I always called my mom when I felt the worst. How about bland soup, or flavored congee (porridge) for a change in diet that might help?

Hey NCOT,
I'm so sorry you are back in a miserable flare. I'm wondering if you need to be in hospital? I don't like hearing that your pain is an 8! Stay on low residue and liquids until you can figure out what's up. I hate that this is happening to you!

Hi guys. Still got a fever, still got chills (despite having the heating on high), still feeing like I'm on the road to death's door :-/

I made the bread and butter pudding. Forgotten what a faff it was and bitterly regretted not just going into M&S and buying their ready-made version, as it's better than the one I made. (Forgot that you shouldn't use fresh bread and it was all I had.) Anyway, I ate about half of it. Should drink something now as I've had very little to drink all day.

The pain is about a 5 now, so unpleasant but bearable.

I forgot to buy Ready Brek when I was in the supermarket >_<. That's basically smooth porridge.

Have an important meeting tomorrow with my support worker, which I don't want to miss so I'll take codeine to get through it if I have to. But I'll see how I am tomorrow. If I'm no better I'll certainly email my IBD nurse. And if the pain does become intolerable I'll have to think about going to A&E... :-/ That's even more of a nightmare prospect now, 'cos I live further away from my Crohn's hospital than I used to and I don't want to go to my local hospital - it's not much cop.

Edit: Okay guys, unless I have a miraculous turn around tomorrow morning I think I'm gonna have to go to A&E. Took paracetamol and 30mg codeine about 45 minutes ago and it's not done a lot - pain is still about a 7. I will never be able to fall sleep through this.

Holy crap: temp is 38.8C now.

Post Edited (NiceCupOfTea) : 9/12/2017 5:08:48 PM (GMT-6)

You better be at A&E! We'll be worrying so let us know how you are. I wish I lived nearby instead of across the ocean!!

Worried about you! How is the fever?

Morning folks. Dear god, the night felt like it would never end. Took a 2nd codeine, which did kick in and I had 2-3 hours of blessed relaxation and blissfully calm guts. But when I tried to fall asleep, I couldn't fall asleep for love or money. The pain and nausea crept back. Started to feel starved and wolfed down 4 slices of ham at 3am like a ravenous wildebeest. Went back to bed. Still couldn't sleep. If I scraped 2 hours of extremely poor-quality sleep over 9 hours I did well.

The fever broke some time during the night. It's 37.2C right now (bit higher than normal, especially as my temp usually runs slightly low). The pain is mild at the moment, although I had some quite bad upper left abdominal pain earlier which made me wonder if it was pancreatitis :/

So yeah, I feel shockingly bad from lack of sleep and the general gruellingness of a severe Crohn's flare-up/whatever, but the pain and fever seems to have settled down. And yet, I still don't feel right. I'm making two boiled eggs for lunch; I'll see how I get on with those. If my symptoms get worse again, rest assured I'll be off to A&E.

Thank you muchly everyone for your concern. I'm genuinely touched by it :p

Hi gumby.

I think I'll wait on calling the IBD nurse, as the fever has gone now and the pain gone. (Well, not 100% gone but what's left is just my normal Crohn's rubbish.) I think I have to conclude that it was probably a virus after all :/ But that said, it was similar to what I went through 5 years ago on Remicade. Developed spiking fevers which got much worse at night and had a similar sort of abdominal pain. Only instead of going away after a couple of days the spiking fevers continued to get higher and finally I ended up in hospital. (Funnily enough, when I was first admitted they thought it was gastroenteritis and sent me home after a few days. I was back in again in no time 'cos it wasn't gastroenteritis.)

So yeah, I was worried I had toxic megacolon again. Or septic shock.

While I'm relieved to have avoided a hospital stay, which in my present state of mind I don't think I would have coped well with, I'm still pretty down about everything. Oh, and that upper left abdominal pain? I had a panicked thought it might be shingles again, since it was in the exact same spot the shingles occurred last time. Still feels sore in that spot but it's not hurting badly anymore. And there's no rash, at least not yet.

The upper left pain came back, but in a slightly higher spot than before so I dunno :/ Always seems to be at its worse in the mornings when I've been lying in bed for hours, then gradually improves after getting up. Still, think it was like that for the shingles pain too. I have no idea anymore.

I'm sorry about the Mediterranean meal. Does salad normally bother you if you eat it, or was it just this occasion? As much as I love mediterranean food, I do find it pretty indigestible. (Never used to, but I seem to find everything indigestible nowadays.) Also, I had a very similar experience with my mum a few years ago. We were at a restaurant in London. Shared a starter of oysters and had the same main of crab linguine. (I probably had some sort of dessert but don't remember.) Anyway, I was hideously ill later on and my mum was fine. Never knew if that was food poisoning or if the rich food and alcohol had triggered a Crohn's attack.

Anyway, thanks Gumby. Hopefully in time you can bring yourself to give the mediterranean place another go!

I hope you are doing better today. At home I might eat a bit of salad or raw veggies, but at the restaurant I ate more than usual. I am also noticing that my once mild lactose intolerance has become much worse lately. I see my GI next week for a routine visit. Since taking the Vanco the D is much better (except for the restaurant night) so it did seem to help. He'll probably have nothing to say as usual. I do walk around with that chronic lurking fear that the Crohn's is back and I'm not really in remission, but I guess I'll know when it gets worse if that is the case!

I hope you can do something nice for yourself today!

EruditePaul said...
NCOT: are you a female? I did not know that.

Yeah. What gave the game away? >.>

@gumby - Yeah, I will eat a small amount of salad or a few veggies as well. Although a few days ago I had onion rings and breaded mushrooms, then liver, bacon and onions the day after. Became ill later that night. Every time I push the boat out, I seem to end up regretting it. I find it easier to avoid veggies at the dinner table altogether now, 'cos I have enough trouble digesting food as it is. But I got greedy with the onion rings and breaded mushrooms :-/

I also have a sinking feeling the shingles is coming back - the pain is so similar to last time (the pain that I was convinced was pancreatitis at first). There's no rash though, and I dunno if any doctor will prescribe me anti-shingle medication without a rash. I'm gonna phone up my GP surgery and see what they say, 'cos I don't wanna go through weeks of this again if it is shingles.

I'm glad the Vanco has helped at any rate. Hopefully your GI won't be completely useless.

@UB - Yeah, pretty much the same drugs are used to treat uveitis as any other autoimmune condition. Remicade didn't disagree with me: it just didn't work. The problem is, I've quite likely to have built up antibodies to it, having been on it and stopped it. Entyvio won't work as it only works on gut cells. Not sure about Stelara - must admit I don't know much about it. Gonna have to look it up and see how it actually works.

I feel slightly drained, but almost back to normal apart from the shingles(?) pain. Appetite has come back so I'm eating a late lunch of chocolate porridge. (Conclusion: needs more chocolate.)

How are you doing at the moment? I hope you're getting some respite after the recent abscess surgery.