Category Archives: social media

Pavlov’s Dog and Vlogs

There hasn’t been an #IBDChat on Twitter for a while so the last hour or so has been quite enlightening. We may have strayed from the original subject of “the causes of IBD” but it gave a good indication of the subjects that sufferers are concerned about.

The conversations were mainly about the physical aspects of IBD and it wasn’t until close to the end that any psychological aspects were mentioned.  It does seem to be an area that needs more open discussion both inside and outside the IBD community. For some sufferers the psychological effects may be even more debilitating than the physical ones.

I have used the hashtag #crohnspatterned to describe how I feel Crohn’s has affected me. When I checked to see if the tag had been used by anyone else it turned out to be unique. I’m sure the phenomenon is far from unique and will affect sufferers of other chronic conditions as well.

Let me make it clear that I have escaped pretty lightly both physically and mentally but the experience has been enough for me to realise how things could escalate. I’m starting to feel that Crohn’s now has me patterned like Pavlov’s Dog.

(Just in case anyone is unfamiliar with the story of Pavlov’s dog  here’s a three sentence version. Pavlov was a Russian psychologist born in 1849. As part of an experiment he found that it was possible to condition a dog to associate the sound of a bell with receiving food. The dog, eventually, would salivate at the sound of the bell in anticipation of the food.)

I have a variety of “bells” which act to trigger my digestive system into action, unfortunately we’re not just talking saliva.  The main triggers are the alarm in the morning; that chiming sound on public transport that heralds the “this train is about to be delayed for an indeterminate time” announcement; the sound of my car starting as I am about to embark on a long journey.  So far I have been able to control the effects by extra Loperamide capsules (Imodium) and mind over matter but I can envisage a time when they simply are not enough. Maybe this is all linked to having a “second brain” in our gastrointestinal systems and the triggers are affecting it.

Vlogging

I made a comment on the #IBDChat that I find the use of words such as “poo” and “pooping” when discussing IBD rather demeans the subject and makes it appear less serious than it is. Just my opinion. You may or may not agree but that leads me neatly onto….

I will admit to preferring the medium of blogging to vlogging. Why? Because I can read and concentrate on the content without being distracted by the colour of the curtains in the background or the appearance of the vlogger, etc. Maybe it’s a generational thing as selfies don’t do a lot for me either. Whatever.

A fellow IBDer asked me if I’d ever watched any of the IBD vlogs on YouTube and I had to admit that I hadn’t. They asked me to have a look at a particular one and asked my opinion of it. Now I am not stupid enough to name that vlog here or what the subject was. I don’t want to start some internecine spat within the IBD Community but. ….

I found the vlog, hit play and sat back to be educated or enlightened. After a few seconds I started to ask myself if it was a joke or some kind of spoof. I discounted irony. I kept watching. It made me feel uneasy and I started wondering what benefit it added to our IBD world. If this was meant to be adding to the cause of IBD awareness then it failed.

If you are going to make an IBD vlog then please make it relevant and don’t cheapen the subject. Nuff said. Can’t see myself making one anytime soon.

 

 

 

Top Tips for Hospital Survival

I had been meaning to do this for a while. I compiled my list of ten things that have made my more recent stays in hospital (UK NHS – 2 bowel operations; 1 emergency admission with 2 weeks recovery) more bearable. I wanted to pass them on in case it helps to improve your “patient” experience. If you’re already an old hand at the hospital game you can, no doubt, add at least another ten. Another way you could look upon your stay is like having a holiday but with no need to pack any clothes…..

Update February 2017 – following my latest trip to hospital – details in my post “24+ hours in Accident and Emergency” – I’ve been able to confirm which three items are the most important to me, especially for a short stay. They are the first three on the list below. The ability to shut out the sounds and lights in a Ward is vital.

Update 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 so they can post endless selfies. (Don’t forget your charger or you will feel really miserable as that last ounce of power disappears)

No.1 HEADPHONES – unless you are lucky enough to have your own private room then the hospital environment will be noisy. There are lots of times when you really want to be able to drown out the surrounding ward noise. I like to take with me two pairs of headphones – 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 ones aren’t as good for keeping out external sounds but you have more choice in your sleeping position. (If you can afford a good set of noise cancelling headphones then all the better)

No.2 iPOD OR SIMILAR – I know that most phones have the ability to store and play music tracks but to prevent running the battery down to quickly I refer to take a separate music player

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.

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.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’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.5 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.6 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 Facebook that has upset you. A decent book or some magazines, preferably with lots of photos and no difficult text, are good ways 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.7 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.8 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.9 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.10 SANITISING WIPES
– with all the nasty infections that can appear in hospitals nowadays – such as MRSA – sanitizing wipes to wipe down any surfaces or objects that you can’t be certain have been throroughly cleaned or disinfected.

No.11 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.12 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.13 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.

The units provide a variety of services – some free; some paid for. It varies from hospital to hospital. In both St.Thomas’ and East Surrey hospitals, local outgoing telephone calls are free, as is the radio. If you want to watch TV, access the internet or play games you have to pay for those services (but I suppose if you have a tablet and there’s good 3G/4G access you won’t need any of this). The fee for 2 weeks worked out a lot cheaper per day than buying each 24 hours at a time. The trick is predicting how long you will be in for.

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.14 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.15 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.16 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.

(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. You may even find that you’re being prescribed over-the-counter tablets anyway, such as paracetamol or Ibuprofen, so it would be quicker to go into your chemist.)

No.17 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.18 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.19 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.20 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.21 SENSE OF HUMOUR/COURTESY – not always easy to keep hold of this when you’re high on drugs, 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.