I wish I had never gone into hospital

Complete and utter waste of 4 days. I think I'm in an even worse position than I was before, in fact.

On Sunday night I was admitted into hospital with high fevers. Yesterday night I left, only to get hit with another rising temperature straight away. This morning, after I woke up, I took my temp and it was 38.3C

Nurse phoned, wanting to know my weight. Told her about the fevers. She didn't outright call me a liar, but may almost well have done, pointing out my temps were normal in hospital. Well I don't give a **** about hospital. I was on a constant supply of paracetamol for a start, and maybe the steroids also helped for a couple of days.

Anyway, I am not taking Remicade while I still have unresolved temps of 38+C going on.

Just feel bitter that I ever went into hospital now. As far as I can tell, I'm not even 1% better and I've now lost a certain degree of credulity. Great result.

Hope you recover from the fever quickly so you can get your infusion.

I wouldn't even risk getting the infusion if I were running fevers. Who knows what kind of infection could be present.

Get mucho rest!

Heya,


I hate the hospital, not because of the pain, the procedures, the surgeries, blah blah blah...

It is the Doctors and occasional nurse, although most nurses I find to be more compasionate then doctors. I cant count the amount of times I have been dismissed or outright abused in the er, as well as individual appointments.

Every time the ER calls you insane you should get cash, yeah, imagine how rich we would all be.

It could be the "No Insanity Clause" So everytime they call you nuts a bell goes off and a little old man from the Monopoly game comes around the corner and gives you 100$

I would actually have enough money if this were real to actually purchase decent care.

There is an article today in the msnbc news under health section about ER's giving preferential treatment to VIP's.

WTH is a VIP, what they pay more each month, they golf with the Docs, they are on the board of supervisors.....

Sad part is, this is the way it is for many, some of us get lucky and find the perfect hospital, Doctor or ER, some of us don't.

I know there are many hospitals all over the world, but let me just I have been to UC davis and Kaiser hospitals, neither would get a decent rating from me or a reccomendation to a friend or anyone else. Others have a better go there, couldn't tell ya why.

I am nto bitter about it now, I was early on, but now I just push through, if I have a serious problem with any of my Doctors or er for that matter, I call Their superviors.

Yeah, thats right, head of GI, and I am thinking Docs don't like that. I don't yell, I play the sick card, it isn't hard, my record and yours speak for themselves. Sometimes you have to go to the top to get the ones below to help.

Patient Advocacy for the er, the charge nurse, if he\she even buys your story after first hearing the staff relate their version of your story to them.

Whatever you think you need to do to feel better is what you should, don't just sit at home letting "them" win because the abused you right out of care. With this disease you can take no chances.

Ask for other doctors in the er if you don't like the one you get, believe me, I get all sorts of crap for this "I am the only doctor, another could take hours to come".....

Is that a threat?

So either I accept your vertigo diagnosis (symptoms passing out daily, actual diagnosis iron anemia defieciency, sent home, nearly died, 5 blood transfusions the following week) or lie here in more pain, hrmmmm, I would dismiss this doctor imediately, perhaps even making a hex curse of some kind with my hands on them. Not that I know anything about that, but wth, it might be funny

It can be very hard and very emotionaly draining geting someone to listen to you and actually help, but don't give up, push them, push them all, YOU PAY THEM.

Sorry
Rant over
I wish you the best
Jon

Hi NCOT,
I'm so sorry you had such a bad experience. Don't give up!!! If your fevers continue, try going on Mon to the infusion clinic or doctor and prove it to them. If you get worse this week-end, you just might need to go back. We believe you for whatever it's worth. Take good care

Thank you, folks.

I'm calmer today, but I was steaming with rage yesterday after talking to that nurse. A couple of hours later, my occasional counsellor/occupational therapist phoned, and I ended up crying on the phone to her about it :-/ ... Wasn't like I was demanding to be re-admitted or anything; I was just saying the fevers had returned. She might just as well have said "well, so? nothing we can do about it and, besides, your temperatures were fine at the hospital so you're probably lying anyway."

Dreadful night. Had a low grade temp running around the 37.7C mark in the afternoon, then it crept up to 39C in the evening. I didn't take anything for it, because I decided I would let my body fight whatever the hell it was than suppress the fever and, by doing so, possibly giving the offending bacteria/viruses more reign to run riot in my colon.

Anyway, I was beyond drained and ill; but I did catch up on some doubtless much needed sleep, considering how little of it I got in the hospital. At around 5am I awoke and the fever had broken, so I took 2 nurofen (I know..) to get rid of an impending headache, then slept for a few more hours. I still feel awful today, but no fever - yet. I'm just taking it easy, sitting out in the sun (the freak heatwave is working to my benefit now! :p), reading, lying down. And it's so, so good to be able to eat good quality food again, especially protein ones. Like organic soft-boiled eggs...

Oh yeah. One last thing. The nurse did ring back to cancel my Remicade infusion for next Tuesday. I have to have a blood test instead, upon which they'll decide whether to go ahead with the Remicade or not. It was a short and abrupt conversation. The nurse didn't ask how I was doing. I notice these things and hold them close to my heart..... >_>

@sniper - oh how I agree at how even a slight temperature raise makes you feel like crap...
@Nanners - Nah, I didn't, though I should've done. I was so annoyed that I think misplaced fury prevented me from pointing out what was, to me, the bleeding obvious :-/
@Blue Velvyt - I was quite lucky with the ER side of things. (Or A&E as it's called here.) In fact all the ER doctors and nurses were very pleasant: it maybe helped that I waited until Sunday evening to go in, hence it was a lot quieter than it would've been on a Saturday, with the injured drunks taking up all the beds! I'm sorry about your crappy experiences though: they sound well out of order :-/ ... Incidentally, my mum - who normally never gets involved in my medical affairs beyond accompanying me to the hospital - was bothered enough to try to phone my consultant yesterday. No joy of course (Friday afternoon...) But yeah, at this stage, I wouldn't even bother talking to that bloody IBD nurse any more. It's a proper doctor or nothing, for me...
@ivy - see my reply to Blue Velvt. It's almost impossible to get through to a hospital doctor or consultant in the UK :-/

Anyways... I'm off back out into the garden <_<

Heya,

May or may not be what you have.

But I have alot of large and thrombosed hemerhoids, sometimes bleeding, sometimes not.

Point is, every bowel movement for me strats with discomfort, then pain, then I goto the bathroom and it can take m up to 20 mins before I go, the whole time I rub my lower abdomen, left side, in hopes to help it move.

Hospital says fixing them could lead to worse problems, anyway, one idea.

Wish you the best

Cya

Jon

@Jon - I don't think it's that... :-/ The pain isn't in the rectum at all and there's no bleeding, not even sometimes. I had it again about an hour ago, horrendously so. I've connected it to the passage of stool through my colon: was watching a film earlier, lying on my back, and there were these uncomfortable gurgles going on - some of them felt like little papercuts in my colon. Took quite a long time to build up to the point I needed to go, and then I had a ghastly 15 minute experience. It puts me off eating, 'cos I just don't want to go through that several times a day. It also plays up after eating or drinking, presumably 'cos that stimulates activity in the colon.

Eurgh. Well, thanks anyway :-/

@Ivy - I saw your last post in my previous thread! I dunno why I didn't think to check it earlier, but at any rate I've got your connect 1001 link :p ... Re the insurance cost. Might be worth finding an Australian driving forum and asking their opinion on how to respond. I did that after I got the letter from the police, but with a UK forum obviously, and the guys there were quite knowlegeable. They put my wilder fears to rest, so I no longer fear a 6-month jail sentence or £5000 fine.

Incidentally: I feel bad now for doubting so vociferously the link between Crohn's and stress. Might be coincidence - and I was on Remicade, too - but I was stressed out to the point of feeling sick over it not long before this current flare-up blew up in my face.

No, the abdo x-ray wouldn't show everything. That's why they also give us 'oscopies and MRIs and c/t scans.

I wonder if some sort of topical medication might help the pains, such as a foam or an enema? Just thinking aloud, but it might be something to discuss with your doctor. It does sound as if you are thoroughly ill, anyway, both on a Crohn's and a wider-body level.

Is there any way you can make an appointment to see your gp early this coming week? My gut (haha) feeling is that you need a proper follow-up examination: this is often standard procedure here after being discharged from hospital, anyway.

btw, I relate to your legal fears. I, too, can wake in fear in the middle of the night, trembling that even a misread form or tiny mistake could land me in jail. I call it grown-up anxiety: scared about handling all these adult responsibilities, and not confident yet that I can do it well and properly, and all these health problems don't help either.

Enjoy 1001!

Ivy, still trying to wake up (stupid Daylight Savings! started too early imo)

Well, that's weird. Why not arrange for you to have an MRI, then, even if it's at a bigger hospital?

I hate to say it, NCOT, but I still think you might be better off being an occasional visitor to St Mark's, even if it is just for second opinions...

Scrap the enemas suggestion, then: just a random thought...

Do you think you could manage on softer foods, just to give your tum a break? If eggs are working for you, maybe a baked custard would work?

Yes, it sounds as if your Dad isn't helping at all. I think you do need encouragement and kindness... and that's why you should keep coming here, my dear.

Ivy.

Another fun toilet trip... :-/

Tbh, I was slightly surprised that they didn't do one or two more GI tests, but I suppose the NHS as a whole tends towards conservatism in that area.

Soft foods are all I'm eating! :-/ ... soft-boiled eggs, prawn sandwiches (crusts removed) and chicken has been my fare for the past 2 days. Normally I love custard but the thought of it right now makes me feel a tad queasy tbh. Got very little appetite atm, so it's hard to keep the calories up: I'm drinking drinks with calories in, such as diluted fruit juices. Been thinking of switching to an all liquid diet, but short on living on chocolate fudgebrownie Frijj shakes, don't think I'd get enough calories that way.

Oh wait.... baked custard. I just noticed the baked bit >_>. Yeah, that's a possibility - one made with milk and not double cream. Only problem is we're all out of eggs and our supermarket shop isn't until monday: of course I can still drive perfectly legally, but I don't think it would be safe to do so while I'm this ill.

NHS food - the horror, the horror.....

Yeah, they do have veggie and ethnic options. Veggie options tended to revolve around beans, not the best choice for a flailing digestive system. Ethnic options... I wasn't shown those, but presumably they'd be curries and the like.

The remainder was mainly bland, processed foods, very carb heavy and protein light. The veggie soups (which I ordered to try and get a few veggies into my system; it didn't work) smelled bad; very very bad. I was and still am ultrasensitive to smell, so I would take one spoonful of the soup and instantly push it aside, mildly nauseated by the cabbage smell which permeated the soup, no matter its flavour. I dunno how a simple bowl of soup could be wrecked so badly, but the NHS managed it.

For breakfast, the milk was always non-cold by the time it reached my floor (3). (The first time I had breakfast I was on the ground floor, so I got cold milk). For lunch, there was never any cold options on offer: just jacket potatoes with limited toppings and a hot meal. One lunch stood out as a bizarre anomaly: I had roast chicken and mashed potatoes and it was actually tasty and good. The chicken was succulent and the mashed potatoes tasted like real potatoes.

But almost every other meal was poor quality rubbish: I've become too used to Waitrose, I'm afraid :-/ (UK supermarket dearly beloved of the middle classes)

Oh that's ridiculous... another toilet trip. I can't say my own food regime seems to be serving me any better, at this rate. Serious bleurgh.

The doc at the hospital could have at least ordered a UGISBFT.
You need to get in touch with your GI asap. Something is going on and it needs to be investigated properly.

Be sure not to let your dad's (or anyone else's) negativity be an influence. (((((NCOT)))))

NCOT, I've been thinking, and the other thing that might be causing this, apart from all the scary things that are going through your brain, is the evil metronidazole. Seriously, that stuff can do terrible things to your innards.

If it is that, the doctors might decide to put you on a different dose, to see if that helps.

But really, this sounds as if it is getting ridiculous to me, too. Curling up on the bathroom floor is bad, NCOT. I really feel for you in your pain.

Most of us have been there, too, and that means that we have more than the usual amount of empathy for any of our friends who are going through the same thing.

Do you feel as if you may be becoming dehydrated? If so, it might be a good idea to call the hospital again...

Ivy.

ps. Maybe your parents could grab you some lucozade or similar when they're out?

Just checked the Lucozade website. Well, I thought it was for sick people, but it seems they've rebranded themselves as catering to athletes. Maybe your pharmacist can suggest a more appropriate brand, but I'm thinking of some sort of electrolyte replacement drink, because you're only going to feel worse if you start developing potassium deficiency.

Huge hugs.

Ivy.

I think it's the balance of electrolytes that's important, rather than just something that's high in potassium itself. If the balance is screwy, the brain biochemistry and nerve signalling and other important things can get messed up, and that's why I'm wondering if a clinical-level drink, from a pharmacist, might be more helpful?

But coconut water sounds very cool and soothing to a hot bod!