I had been meaning to update this for a while. I compiled my list of ten things I learned would make life easier during my more recent stays in hospital (UK NHS – 2 bowel operations; 2 emergency admissions, one with a 2 weeks recovery stay). I wanted to pass them on in case it helps to improve your “end user” or “patient” experience. I thought I’d ask some patients if they could add o my initial list so I posted the question on a Crohn’s Forum. Thank you – xxSophiex, IHurt, CDJ, UnXmas, acc929, SickofCrohns for your additions.

Here’s the updated version which has now grown from 10 to 18. I’m not suggesting you take all the physical items listed below with you in one go. I’d go for a phased introduction as your recovery progresses.

One possible risk to bear in mind is not being able to keep your expensive technology securely whilst you’re in hospital. The wards I’ve been on have discouraged the bringing of valuables into hospital for this reason but realistically everyone will want their mobile phone with them. The ideal solution would be for each bed to have a patient lockable drawer/cupboard but I’ve never seen one in the NHS. There may be a ward safe that you can ask for valuables to be stored whilst you are in theatre and recovery.

No.1 MOBILE PHONE – it goes without saying that you will have your phone with you but not so long ago you weren’t allowed to use them on the wards. There may still be restrictions in certain sensitive areas. Don’t forget your charger, preferably with a long lead in case the mains sockets are halfway up the wall.

No.2  HEADPHONES – there are lots of times when you really want to be able to drown out the surrounding ward noise. I prefer to have two pairs of headphones with me – in ear and over ear. Over ear will give you the best isolation from the ward noises but you can’t comfortably lie on one side with them on and your ears tend to get hot! The in-ear may not be as good for keeping out external sounds but you have more choice in your sleeping position. (A good pair of noise cancelling ones would be a good idea).

No.3  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 during the mid-morning lull. That’s the bit between the doctors doing their ward round; the beds being made ward round ; having a shower and lunch being served.

No.4  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 used that “flavour” for several years afterwards. Every time I caught that fragrance it would immediately transport me back to the first shower I had post operation – a happy time despite the surroundings.

No.5  SOCIAL MEDIA – I have found the support received on SoMe when one is isolated in hospital is a great comfort. If you wake up in the middle of the night, in pain and can’t get back to sleep there is usually someone out there who will respond with positive messages.

No.6  PYJAMAS AND DRESSING GOWN – the admission instructions may 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. (They usualy give you 2 gowns nowadays to address the gapping issue)

No.7  BOOKS AND MAGAZINES – there will be times when you’re not dozing but you really don’t want to warcg more movies or, even worse, daytime TV! A decent book or some magazines, preferably with lots of photos and no difficult text, are a good way to pass the time. I was given a volume of Sherlock Holmes short stories and found that each tale was just the right length to read before needing a rest.

No.8  CASH – This item is a bit of a throwback and was, once upon a time, relevant. I expect everything is contactless nowadays so don’t forget your card.

No.9  MAKE-UP – I’m a bit out of my depth here because I’ve never knowingy 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.10  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 it is.  The two wards I spent time in at St.Thomas’ always had a good selection freely available. You only had to ask!

No.11  SANITISING WIPES – with all the nasty infections that 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. (May have been superceded by COVID precautions)

No.12 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.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  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.15  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 attention.

No.16  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?”. 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. 

I accept that 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 around. The automated pump will start bleeping which will quickly become annoying for both yourself and your fellow patients (and the nurses). If you get a choice of which arm it is put in remember you will have eat meals and manage in the bathroom with it connected. Choose carefully!

No.17 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 you may be able to go home and then get someone to return later to pick up your medication.

No.18 SENSE OF HUMOUR/COURTESY – not always easy to keep hold of this when you’re drugged up to the eyeballs, have got 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 list. If I had to choose just one physical item to take in with me it would still be the headphones as they give you the 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.