A little help needed from a hospital bed!!

Crohn's Disease Forum

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Mar 10, 2014
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Hi, thankfully it's been a bit since I've been on here but have found myself in a bit of a mess at the minute! It's a long story so I will try and keep it brief as possible to keep the boredom away!

Last weds/thurs- normal days, passed a lot of mucus but GI is NEVER interested whenever I mention it so just passed it off.

Friday- surgery on my right ulnar nerve to have it moved due to it being trapped, all went well. No issues, home that night!

Thursday (must mention I have not been to the toilet now since previous thursday, have been taking tramadol (not heavily) for pain in arm and movicol to help bundle things along bowel wise) - normal day, had dinner around 6 at my parents, had a friend over.... Started to feel nauseous and a bit hot and sweaty. 9pm I was vomiting all my dinner back up and more. Got in bed, continued to be sick until 3am (probably talking about 7/8 times). Pain in LRQ and back became excruciating and ended up on toilet 3-3.30 am passing watery stools. Ambulance called, a&e morphine/fluids/antisickness. Abdo xray shows small amount of fecal impaction but nothing major. Dr thinks it's crohns flare up (only diagnosed in March so all very new) sent up to ward and seen by Dr- DOESNT think its crohns but just constipation. (This is now friday). Spent much of fri night on toilet (10-12 times).

Saturday- woke up bit hot. At this point I'm only on oral paracetamol. Fast forward to Saturday evening 6 pm I'm rolling around in pain feeling sick. They gave me oramorph (stuff never works for me) half an hour later I'm rolling around in pain. Only passing minimal watery stool. Hot and sweaty, fast bp etc. Dr called to ward and said he doesn't know if it's crohns or not, they're getting a GI specialist to see me monday but if I'm no better tomorro they start me on hydrocortisone iv. Anyway, pain persists, I beg them to give me morphine iv (only thing that settles me in anyway), they do and at same time they put up hydrocortisone iv.

In short- what the hell is going on?

Bloods on thurs night showed an infection, Saturday morning no infection. CRP is fine but apparently doesn't always need to be raised. All this is really confusing as I don't really have a 'norm' for me just yet.

Can anyone shed any light on the barrage of crap I've just written?! It'd be much appreciated, I appreciate anyone that's took the time to even read it!

Thankyou from a very exhausted patient!
 
Have you had any stool tests? That may be helpful. Also, make sure they are giving you IV fluids because with your high heart rate and heat sensations, fluids are a must. It sure sounds like a Crohn's flare....BUT it could also be an infection. Have you had any ct scans or MRI's? That may help determine what's going on. Now, if you are having a flare, you may want to talk to your doctor about switching to IV solumedrol. That's basically the IV form of Prednisone. Keep me posted on how you are doing, ok? Sending you healing thoughts!
 
Thanks for your quick reply! I came into a&e with hr of 135. Only on Friday did it really settle to 80ish. Today it's been between 90-115. I am only drinking fluids, I've not eaten food since Thursday night (apart from bite of a banana and 3 mouthfulls of soup). I'm generally feeling pretty crap and the morphine is wearing off I can feel the pain rising again. They did a stool sample they've not said what it came back with? I must ask thsnkyou. Is hydrocortisone a good way to beat the crap out of this thing? My usual gi says I have 'very mild' crohns, which trust me I am glad of, but all the drs look baffled when j tell them I don't take anything for it (bar nortriptyline at night). No cts or mris since diagnosis!

Thanks again for taking the time to reply! x
 
Hydrocortisone is good as it's a steroid (which beats inflammation aka Crohn's). Now I could be wrong since I live in a different country, but over here IV Prednisone (solumedrol) is one of the best treatments for acute flares.

I really think it would be wise to get some IV hydration. Since you are only getting fluids by mouth, and you may not be absorbing that well because of your symptoms, IV is a much better option. You don't need to deal with dehydration and the complications it can cause on top of everything else.
 
Parents are exact same food Thursday night. And two days prior to that actually! So I doubt it. I am on iv fluids and I'm glad for it, woke up (actually slept a bit) in little pain, I'm assuming morphine has worn off by now so maybe steroids are working?

I'm a novice!
 
Definitely consider to push for mri or ct scan. Such pain must be checked out, not be dealt with pain killers.
It does sound like a Crohns flareup, but that require diagnosis, obviously.
Leave the "mild" and other definitons aside. Crohns can have very tricky prognosis and you never know what's going to be next. It's a real fun here at the club :yfaint:

If you respond to steroid testing tha would be another sign towards a Crohns flare diagnosis.

Is your Crohns characterized by strictures by chance ?

Feel well and keep us posted. Get this thing under control as soon as you can.
 
Hi thanks for your response. Today I am a LOT better. I still don't feel 'right' but that huge pain from last night hasnt reoccurred since then and I haven't had any more morphine so that's a pretty good sign that it's the steroids that is settling things right? I've had two episodes of D today. I still have sickness and my pain at most has been a 4/10 today.

All I know is that I have crohns in my terminal ileum. My specialist (not at this hosp) seems most disinterested in my crohns for most of the time.
 
Hi a little update and a bit more advice needed if it can be given!

So I've responded well to iv steroids, definite crohns flare. Plan is tomorrow off iv and onto oral prednisolone (uoset at he prospect of the round face thing... Is that really a definite??), then onto azathioprine after I'm off the steroids. Can people fill me in on what experiences they've had on the above drugs as a bit of a heads up?

Dr also examined me and thinks I may have appendicitis! Plan is to scan and see if it's inflamed, he said even if not they might still whip it out...

Thanks for any help! X
 
I've been tapering off prednisone. I started on 40mg and right now I'm at 20mg. I'll be off by the beginning of November.

I noticed that in the beginning if prednisone, I felt great! Loads of energy, energy I haven't felt in a few years!

I did get some acne breakouts on my forehead, that just now is starting to finally dry out but still visible. I also unfortunately did get the beautiful moon face. It started to show up after about a week, and I still have it, though, I believe I have a mild case of it, but it's still annoying :( I've heard that as soon as you go off of the med, the swelling goes away. I hope that's true.
 
Hi a little update and a bit more advice needed if it can be given!

So I've responded well to iv steroids, definite crohns flare. Plan is tomorrow off iv and onto oral prednisolone (uoset at he prospect of the round face thing... Is that really a definite??), then onto azathioprine after I'm off the steroids. Can people fill me in on what experiences they've had on the above drugs as a bit of a heads up?

Dr also examined me and thinks I may have appendicitis! Plan is to scan and see if it's inflamed, he said even if not they might still whip it out...

Thanks for any help! X

Not everyone gets every side effect, you may not get a moon face. I did get a moon face with prednisone (similar to prednisolone), but only after a few months on it. (And since I was underweight, I actually looked better; I looked healthier because I wasn't so gaunt.) The longer you're on the prednisolone, and the higher the dose you're taking, the more side-effects you will probably accumulate, which is why the aim is often to use it as a short-term measure. Don't worry about the moon face too much, if you do get it, it will go away when you're off the medication. I had a short course of prednisolone a few months ago, just for one week, and the only difference I noticed was that I had more energy and my mood improved! You may find you feel very well on it, so don't worry prematurely.

Hope they are figuring out what's wrong with you and you will soon be able to get out of hospital!
 


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