I posted the link to this list on the Crohn’s Forum (www.crohnsforum.com) and some “old hands” got in touch with their tips. Thank you - xxSophiex, IHurt, CDJ, UnXmas, acc929, SickofCrohns.
November 2014 - with the virtual blanket ownership of smartphones and tablets plus the widespread adoption of SoMe (social media) I've had a bit of a tidy up and removed most of the technology items. I'll assume that all patients, below a certain age, will have their mobile phones with them during their every waking moment. (Don't forget your charger or you will feel really miserable as that last ounce of power disappears)
One possible risk to bear in mind is not being able to keep your expensive technology securely whilst you're undegoing procedures etc. The wards I've been on have discouraged the bringing of valuables into hospital for this reason.
No.2 EYE MASK - like the ones you have for air travel. It’s very rare to have all the lights off in a ward and even if they are, the nurses will be frequently checking on the more poorly patients so the over bed spotlights will be going on and off throughout the night. That's where the mask comes into its own.
I haven't actually tried a mask so have found the best time for dosing is mid-morning, after the doctors have done the ward round and you’ve had a washdown or a shower or early in the afternoon before visiting time starts.
No.3 SHOWER GEL/SHAMPOO - sometimes these are available in the hospital but there’s nothing like having your own, favourite brand to keep you in touch with home. It’s said that smell is the strongest sense for recalling memories. There is one particular shower gel that I bought ready to go into St.Thomas’ and I’m still using that “flavour” today. Every time I catch that fragrance it immediately transports me back to the first shower I had post operation.
No.4 PYJAMAS AND DRESSING GOWN - the admission instructions ask you to bring in your night clothes but I have found that pyjamas are usually available anyway. That’s fine if you’re not fussed about the colour. After my reversal operation I was issued with bright orange pyjamas so it looked like I had just escaped from Guantanamo Bay. I try and use NHS pyjamas for a few days after an operation in order to give anything that might be oozing a chance to stop oozing and then it’s into my very stylish M and S ones for the rest of the stay.
The dressing gown is a must. Not only can it give you a bit of extra warmth when sitting about but also covers up that embarrassing gap up the back of your medical gown where you haven’t quite managed to do the tie-ups up.
No.5 BOOKS AND MAGAZINES - there will be times when you’re not dozing but you really don’t want to a) watch the truly appalling daytime TV, or b) you've gone boss eyed from staring at your phone for a little too long, or c) someone has made a comment on that Facebook page that has upset you. A decent book or some magazines, preferably with lots of photos and no difficult text, are a good way to pass the time at your pace. I was given a volume of Sherlock Holmes short stories and found that each story was just the right length to read before needing a rest.
No.6 CASH - taking a large amount in with you is not a good idea but it is worth having, say, ten pounds in case you want to buy a magazine or some toileteries from the trolley that visits the ward every couple of days.
No.7 MAKE-UP - for all the girlies and anyone else who likes to wear make-up (I’ve done the “Political Correctness and Inclusivity” Course) I’m told it can make a big difference. I’m a bit out of my depth here because I’ve never worn make-up,. I’ll quote directly what acc929 said :
“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.”
No.8 FAVOURITE SNACKS - after an operation or maybe a bad flare-up you may need something to help you get your appetite back. If you have some favourite snacks or chocolate bars etc. pack a few in your bag. Some hospitals have will provide snacks anyway but I don’t know how common that is. The two wards I spent time in at St.Thomas’ always had a good selection freely available, at any time. You only had to ask!
No.9 SANITISING WIPES - with all the nasty infections that can appear in hospitals nowadays - such as Mrs.A - sanitizing wipes to wipe down any surfaces or objects that you can’t be certain have been throroughly cleaned or disinfected.
No.10 HAND CREAM AND LIP BALM - the atmosphere in the wards is often very dry so creams and balms will help you keep your skin feeling good.
No.11 PILLOW - this isn’t a problem I have had but if you can only sleep when your head is resting on your favourite pillow then take it with you. Just make sure that you don’t leave your bed for a few minutes only to return to find it’s been sent to the hospital laundry!
No.12 OVER BED ENTERTAINMENT UNITS - I'm not sure how widely these entertainment units have been rolled out in NHS hospitals. If you are going in for elective surgery it's worth ringing the hospital or checking their website to find out if they have them over each bed.
|Northumberland Ward, St.Thomas' Hospital - showing overbed unit on left|
Payment can be made from the unit itself so you may want to take your debit or credit card with you, when you get admitted, make the payment and then get whoever accompanied you to take the card home again. You shouldn't need to worry if you change beds or wards as you can get the services transferred to your new location. This may all be academic to start off with as the first couple of days after a major operation you will probably be drugged up to your eyeballs and watching TV won't even come into the equation.
The over-bed units should have their own headphones supplied but these are usually very flimsy i.e. not good at keeping sound out or missing. I've found using my own headphones a better bet.
No.13 LISTS - pen and paper - or you could use an app on your phone or tablet. I have always found it useful to write down any questions I want to ask the consultants on their ward rounds. I've tried keeping a list in my head but when you are confronted by the consultant and a gaggle of junior doctors, early in the morning, it's easy for all thoughts to just disappear.
No.14 CANNULAS - if you have to have a cannula and, let's face it, it's pretty much a certainty, don't let a doctor put it in. No matter how much practice they claim to have had they are never, ever, as good as an experienced nurse. In the past I have actually said to a doctor '"Are you sure you are good at inserting these things?". He assured me that he was but an hour later I had to have it redone as there was insufficient flow through it. This has happened on several occasions so I stand by my "never trust a doctor with a cannula" statement.
The positioning of the cannula is governed by where a good vein can be found but if at all possible try and avoid having it on the bend of the arm as you will frequently be interrupting the flow when you move your arm. If you get a choice of which arm to put it in remember you will have eat meals and manage in the bathroom with it connected.
No.15 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 pre-empt that wait by persuading them to make sure the necessary tablets, in the correct numbers, are in your bedside locker ready for discharge. They are also the best person to talk to about any new medications you've been prescribed and possible interactions.
No.16 PAIN - if you start feeling pain or a different pain don't be brave and keep it to yourself TELL THE NURSE. It may be nothing and you can be given painkillers to help. On the other hand it could be something that needs attention and the sooner that attention starts the better.
No.17 INHIBITIONS - try and lose any inhibitions you may have about discussing the more intimate details of your condition with the medical staff. You may notice something different about your body or what comes out of it. Again it may be nothing or it might need further investigation.
No.18 SUSPEND NORMALITY - the hospital environment is very different from your usual environment. Sometimes you may feel completely out of your comfort zone. If you can get into the mindset of suspending your normality and accepting a different regime then your hospital stay should be more bearable.
No.19 WHAT HAPPENS IN HOSPITAL STAYS IN HOSPITAL - not everyone will appreciate your description of the procedure or surgery you have just undergone. If you want to go into the gorier details then best avoid regaling your visitors with them or your friends when you get home. If you really must unburden yourself then try one of the Forums or Facebook Groups that is dedicated to your condition as you will find a, mostly, willing audience.
No.20 SENSE OF HUMOUR/COURTESY - not always easy to keep hold of this when you’re drugged, have tubes coming out of every orifice and your future is uncertain but if you can do your best to keep your sense of humour and treat the doctors, nurses and other patients with courtesy then it will make your stay a lot more bearable. Of course you may be one of those unlucky individuals who has had a humour bypass in which case you should get on well with some of the doctors I’ve met!
That’s the revised Top Twenty. If I was being rushed into hospital and only had time to choose just one physical item to take in with me it would be the headphones as they give you the best chance of getting some sleep in a noisy environment. The one behaviour I would adopt is a combination of the above but can be summed up as “acceptance that a hospital regime will probably be completely alien to your usual way of life but you do not need to lose your sense of dignity, humour or courtesy”. If you feel any of these are being compromised - complain.