• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Tips for surviving the hospital

A light-hearted, but serious suggestion - try not to get stuck on a ward with patients using CPAP machines. Your headphones will not work, and you will not get sleep. I know we don't get a whole lot of choice on that however. Hopefully you can avoid a private room!
 
As crazy as it sounds, bring your own bleach spray to sanitize stuff! I remember being in the ER a couple months back and the nurse handed me the remote next to the bed in case I wanted to watch TV. I would not even touch that thing! Guess what, when the cleaning service cleans the rooms, they DO NOT clean the remotes and other surfaces that everyone touchs and God only knows what the person who was in there before you had. I know I did NOT touch a thing in that hospital room when I was waiting in the ER. With all the nasty deadly infections that are running rampant in the hospitals these days you can never be to careful......
 
I have just spent 2 weeks in hospital with my son who has crohns.

I would say pack some ear plugs as you don't get any sleep otherwise due to the constant noise, also an eye mask would be good to shut out the light at night. My son's ward was never dark, and when they opened the store cupboard at night the light just lit everything up.
Headphones as you say are a good idea. We had both in ear and over ear.

the children's ward he was on there was no working TV's, so we ended up taking in a lap top so that we could watch DVD's and catch up TV on the internet. The cost of wifi was £12 for a week which was well worth it for MY sanity :lol2:

A good book is a good idea too. Too much time just waiting for doctors rounds.

I don't know about adult wards, but the children's ones tend to have a parent kitchen, so if you know in advance [ we didn't ] your child is going in for a few days, it is worth packing a few meals and snacks which will go into a microwave. The cost of food at the hospitals is high. Patients get fed, parents don't.

Try to find out when you will possibly be allowed to go home and get your meds the day before. Both times recently when my son was in we waited a long time for pharmacy, first time 6 hours, second time 4.5 hours. Nothing worse when all you want to do is go home.
 

UnXmas

Banned
No.10 PHARMACISTS - when it's time to be discharged I can guarantee that you will be ready to go but will then have to wait several hours whilst pharmacy get the correct medications up to the Ward and you can finally leave. If you make friends with pharmacist on their daily ward rounds you can preempt that wait my persuading them to make sure the necessary tablets, in the correct numbers, are in your bedside locker ready for discharge.
If you live near the hospital, another option is to come back and pick up your prescriptions later, or send someone to pick them up for you. Also check what you're actually being prescribed. If it's something readily available, like paracetamol, you can buy your own at a chemist or get your GP to prescribe it for you. I was discharged one time and told it would be a couple of hours until my prescritpions arrived. When I found out my prescriptions were paracetamol and ibuprofen, I decided it wasn't worth the wait - I have those at home anyway.

As crazy as it sounds, bring your own bleach spray to sanitize stuff! I remember being in the ER a couple months back and the nurse handed me the remote next to the bed in case I wanted to watch TV. I would not even touch that thing! Guess what, when the cleaning service cleans the rooms, they DO NOT clean the remotes and other surfaces that everyone touchs and God only knows what the person who was in there before you had. I know I did NOT touch a thing in that hospital room when I was waiting in the ER. With all the nasty deadly infections that are running rampant in the hospitals these days you can never be to careful......
In the hospitals I've been in, I've seen the cleaners clean the TVs, phones, etc. It probably depends on the hospital/ward. Bringing your own cleaning things is probably a good idea just to be on the safe side.
 
I think this is probably a bit more on the girly end of things, but I've found that taking good care of myself (when possible of course) in hospital helps keep my morale up. I think the sicker you look, the sicker you feel, so if you have the energy it's worth making a little effort. I bring my nice robe so I don't need to wear the hospital gown, my favourite perfume, and my own shower stuff in little bottles. I bring a tiny bit of make up so that when people visit I don't need to deal with them telling me how tired I look (I'm in the hospital, duh!) Bottom line, having your own things makes everything feel better. Of course, post-op and such things like this don't really matter, but I figure then you're so zoned out it hardly matters! But when you're hospitalized, nothing beats being able to wash your hair and feel presentable.

My mom started buying me a stuffed animal every time I got hospitalized when I was diagnosed at 11. She still does this when I'm 22 because she's the best. This past time it was Tigger. It's nice to have something to hold, especially if you're stuck sleeping in a position you aren't used to (despite how juvenile it may look!) And bring your own pillow if you're counting on being there for a while! Hospital pillows SUCK! Ugh! Also, I've never brought an eye mask before but after my past hospitalization I see the necessity! Every time my roomie's lights went on, I woke up and had so much trouble getting back to sleep (after an IV drip of gravol and an ativan, no less), and every time I said "I wish I owned an eye-mask."
 
I agree 100% with the ear plugs and masks. Also:

-- Dignified night gowns/pyjamas. (At home I sleep in ratty old T-shirts most of the time. I have some dignified stuff to bring to hospitals).

-- Slip-on shoes or washable sneakers/trainers or slippers -- you don't want to have to bend over to tie laces, and you don't want to bring nasty hospital floor gunk home after your stay.

-- Snacks -- especially if you're like me and have unusual food allergies. This sounds counterintuitive if you're going to the hospital with out of control diarrhea and haven't eaten in days, but usually you are stuck there for a bit after you stabilize, and there's no guarantee that they'll be bringing you a meal by then, and you will be hungry. . . and if your snacks require a spoon, bring plastic spoons!

-- Hand cream and lip balm -- it's often dry in hospitals.

-- Magazines full of pictures -- for those steroid/narcotic-filled days when you are awake but can't concentrate on anything.

-- Something to do with your hands -- also good for spaced-out days when manic on steroids. I wish I had the foresight to bring crocheting with me. It's relatively mindless but can help pass the time. Playing cards might also be good.

-- PHONE CHARGER!!!
 
Thanks everyone for your responses. I will amend my list to the Top 20 as there are so many good ideas above. The only one I haven't tried is make-up. Not sure how my wife would take that one!

I'd forgotten about snacks and chargers - for all those electronic gadgets.

Pyjamas and slippers - I always get those brought in once I'm ready to get out of the hospital gown. And a dressing gown although these and pyjamas were actually supplied by the NHS. It's OK if you're not fussy about colours. I was given some orange pyjamas so it looked like I had just escaped from Guantanamo Bay.

BTW - what is a CPAP machine?
 
pretty sure it stands for Constant Pinging And Pleeping machine, guaranteed to keep you awake even after 4-5 days of no sleep
 
A Cpap machine is a machine that people use at night to help them breathe better. It helps with sleep apnea. And yes it can be quite noisy for sure...








Thanks everyone for your responses. I will amend my list to the Top 20 as there are so many good ideas above. The only one I haven't tried is make-up. Not sure how my wife would take that one!

I'd forgotten about snacks and chargers - for all those electronic gadgets.

Pyjamas and slippers - I always get those brought in once I'm ready to get out of the hospital gown. And a dressing gown although these and pyjamas were actually supplied by the NHS. It's OK if you're not fussy about colours. I was given some orange pyjamas so it looked like I had just escaped from Guantanamo Bay.

BTW - what is a CPAP machine?
 
I survived 5 months in the hospital by befriending all the student nurses. I let them practice anything they wanted to do, from cleaning my pic line to packing my abscess wounds. They were a lot gentler than the nurses anyway, and they appreciated it, and would spoil me with things like a shampoo in bed, when I couldn't get up. They would come in and ask if there is anything they could do for me.
 

annawato

Moderator
Staff member
Tuff, I do the same thing. I get the nurses to use me for all their teaching purposes. far more entertaining than the tv - and gets you on the right side of the nurses. Always a bonus. :)
 
That's a really good idea Anna and Tuff. I always make a point of trying to make life as easy as possible for the nurses. I wouldn't want to do their job and if I can make it more pleasant for them by keeping a sense of humour, no matter what procedure they are performing on me, then I will but I must admit to coming very close to having "humour failure" when I had a naso-gastric tube inserted!
 
Great tips!

Also, you just reminded me I had an ultrasound done by a student while I was hanging around the ER waiting for surgery lol I had forgotten all about that!
 
A fan.

During my month stay in hospital fans were in very short supply and I ended up making my mum bring one from home for me to have. For some reason I was having constant hot sweats and would be literally dripping with sweat just from lying there...
 

annawato

Moderator
Staff member
I always make a point of trying to make life as easy as possible for the nurses. I wouldn't want to do their job and if I can make it more pleasant for them by keeping a sense of humour, no matter what procedure they are performing on me, then I will but I must admit to coming very close to having "humour failure" when I had a naso-gastric tube inserted!
It is amazig the job they do and I am sure they have their fair share of awful patients so like you I alos try to make their job easier and more pleasant. I always like the challenge of making a grumpy nurse smile and be happy. Pays dividends for future visits too but the main reward is just making their day better. Its the old pass the mood on.....preferably a happy and pleasant one.
 

UnXmas

Banned
I find being nice to nurses quite easy, because most of them are nice themselves. While it seems to be quite rare to find a nice doctor, it's very easy to find a nice nurse. Since I unintentionally seem to reflect people's moods back at them, it's much easier to be polite with the nurses.
 
Unless your bloody Sister-in law works in the HD unit you are spending your 1st few days in,luckily she was on maternity leave,but thought she would be funny and tell all her colleagues that i was a woman and had a sex change,took me a week to find out why EVERYONE wanted to give me the bed bath,even the bosses.....suppose it lightened the mood :)
 
Women should bring their own sanitary products, if they'll need them. The ones in the hospitals that I've needed were reminiscent of the 1970s. No ultrathin or moisture wicking available!
 
Women should bring their own sanitary products, if they'll need them. The ones in the hospitals that I've needed were reminiscent of the 1970s. No ultrathin or moisture wicking available!
OMG, yes, you are SO right!! I was begging to go to the gift shop to see if they something I could use instead of the mattresses they gave me LOL
 
I find being nice to nurses quite easy, because most of them are nice themselves. While it seems to be quite rare to find a nice doctor, it's very easy to find a nice nurse. Since I unintentionally seem to reflect people's moods back at them, it's much easier to be polite with the nurses.

We have the opposite - super nice doctors but its rare to find a really nice or friendly nurse. But I try to remember that nurses work incredibly hard and they are very under-staffed here and I grit my teeth and be really nice not matter how long we wait or how grouchy the nurse seems - and it pays off. We only have so many nurses and they remember you after a few visits.
 

UnXmas

Banned
I couldn't get your link to work. :(

After over a decade of misdiagnosis and three medical conditions, I definitely have things to say about managing consultants, so I'll be very interested to see your list!
 

UnXmas

Banned
Sorry, got it working now!

I agree with your list, however some things you really can't control. E.g. whether they'll email you between appointments, and whether you see the same consultant each time. I have one excellent surgeon who always makes sure I see him, and never "a member of the team", as the letters say.

My medical history is so long and complicated that seeing anyone new is very difficult. My GP surgery makes sure I always see the same doctor, as there's no time for someone to get to grips with my medical conditions in one appointment. So I guess my tip would be: have as many illnesses as possible, that way you'll be able to see the same doctors consistently! :p

I wish more doctors would use e-mail or phone consultations! I've had so many long trips to faraway hospitals, and hours of waiting, for a consultation that includes nothing that could not have been said over the phone.

It should make sense to have a list of your aims for the appointment before hand, however I find that most of my appointments don't end up following my plan. I don't bother planning lists of questions any more. Maybe that's because I let the doctor dictate what gets said? One thing I have learned is that consultants really do not like patients making suggestions about their illness or treatment! I know it's terrible, but if I'm seeing a consultant for the first time, I keep my ideas to myself until I can suss out whether he/she is one of the many doctors who gets angry when patients make suggestions of their own.

Another thing I learnt early on: don't expect a diagnosis from a consultation. Most doctors will not commit themselves to a diagnosis, or sometimes even suggest possible diagnoses, until they have all test results back.
 
Top