Medical Record

Temporary tattoo on forearm. QR code links to medical record summary (it really does!)

This image gained some interest when I posted it on Twitter so I thought I would explain it’s genesis. From the outset I wish to make it clear that it is my solution to my specific needs. I’m not proposing it as a universal solution for quick access to medical information, more a stimulus for further thinking and discussion. (I’m also not claiming this as an original idea – there is at least one patient in USA who did it first)

The Trigger

In February 2017 I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history  and medication.

Next I saw an A&E Registrar. He asked the same questions but what would he have concluded if I hadn’t been able to fill in the details? He would have been confronted with a patient with a large scar up the midline, the hint of a stoma location and an appendectomy incision. He wouldn’t have known why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that : I have Crohn’s disease; the attempt to remove my appendix had been aborted; I have Portal Vein Thrombosis resulting in additional veins growing in my esophagus (varices) and around by gallbladder; that my spleen is enlarged; or that the low platelet count is now normal for me. Valuable time could have been lost trying to investigate the problems that were already known about and being treated.

Do It Yourself

As a result of my A&E visit I wondered if there was a standard, minimum set of data that should be available? Was there a standard format for the data? I searched the internet and could find nothing. A good starting point would therefore be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. There are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these appear to be US based only and the data held was not in sufficient detail.  How feasible would it be to produce a standalone, wearable device?

Attempt 1

First attempt – using a USB bracelet. First task – decide upon data and format. I settled on two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents were stored as pdf files and linked to various back-up documents such as laboratory or histological reports.

USB Bracelet

There were two problems :

The format of the data was such that it would still require a fair amount of time to wade through and understand the aetiology of ,and relationships between, the various LTCs. This was solvable but the second issue would be insurmountable.

In order to protect the system from viruses it is unlikely any NHS computer would allow the reading of an external USB stick. Time for a rethink.

Back to the Drawing Board

A couple of years ago I drew  a diagram to try and understand the aetiology/relationships that I mentioned above. I used the metaphor of a jigsaw as that is how my health appears to me. The penny then dropped that it would be a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This illustration shows an early version of the drawing.

Early version of “jigsaw” diagram

…and then someone set me the challenge of making an interactive version that would open up the relevant documents or test results when you click on an element of the diagram. This would make the ideal interface for my medical record.

Basis of interactive medical record jigsaw

To get over the USB security problem I settled on holding the data on a server and then accessing it via a QR code. Initially I thought of using a dog tag style SOS pendant with the code engraved on it but I have yet to find a company that can do this as a one-off at a reasonable price. I could use a conventional SOS bracelet with a printed QR code inside but why not try a tattoo?

I didn’t want a permanent tattoo as it would not allow for any future changes. I opted to try making a temporary one using those kits that are readily available online. After a couple of false starts, mainly due to not reading the instructions carefully (it’s a man thing), I had a readable QR code tattoo. Where to stick it? The ideal position would be somewhere that is not generally visible but would be seen by an HCP. I chose the inside of my forearm, just above the wrist. Anyone looking to insert a cannula would be bound to see this and hopefully use a phone or tablet to scan the code.

(I’m counting on the HCP having the curiosity to try the link and once  opened realise the importance of the information available. You could call this a “leap of faith”)

Future Developments

Life would be so much easier if the NHS had a universally accessible records system that held all our medical details, linked to our unique NHS patient number (only needs a simple, unchanging tattoo). I can’t see that happening in my lifetime given the success of previous attempts.

Clearly I have no issues about the confidentiality of my medical data or I wouldn’t be writing/publishing this post. I know that many patients do and this needs to be taken into account. I am willing to trade confidentiality for the speed at which my medical record could be read should I be involved in an emergency.

Answers

Why Does It Hurt?

View from the South Bank looking towards Blackfriars and St.Paul’s

Meet The Surgeon – Friday 8th March 2019 – a visit to St.Thomas’ to see the upper GI surgeon. A surprisingly lovely day and a chance to do some serious walking  along the South Bank of the River Thames.

Last time I saw him we discussed removing my gallbladder and had agreed to put it on hold until absolutely necessary. I had asked for this new appointment to discuss the pain I’ve been experiencing in my right hand side. I wondered if it was connected to my gallbladder (or scar tissue; or Crohns inflammation; or something else). He had a good prod around and was able to pinpoint the exact centre of the ache. (I knew he had found it as when he applied a fair degree of pressure, it hurt)

You have a small hernia. Usually we would offer you a short operation to repair it but given your history I doubt whether we should consider it“. The history he was referring to was the growth of new blood vessels in my abdomen due to PVT (Portal Vein Thrombosis). The vessels grew to relieve the pressure caused by the blocked portal vein.

I could now understand and visualise the pain. So much easier to deal with. Should I change my lifestyle? “No, carry on as before but if it gets worse then we will have to revisit the situation. You’ve got our contact number”. Should I consider wearing a support belt (as I had done when I had a stoma? “If you feel it helps“.

One Day My Prints Will Come

I mentioned that I had not yet seen the capsule endoscopy report from last November. He called it up on screen. No wonder they were having difficulties printing it. It comprised page after page of stills from the 12 hr video. There was however a summary page and I was surprised to find that it reported active inflammation in the proximal (top end of the) small bowel and a little further down as well. The far end (site of my anastomosis) was clear.

On the train home from London I thought more about why I was surprised and concluded that I really shouldn’t be.  Colonoscopies always showed no inflammation; upper GI endoscopies showed the same.  It was only the elevated calprotectin level that suggested anything was wrong. If that level wasn’t a false positive then the problem had to be somewhere between the duodenum and the terminal ileum. The last small bowel MRI scan had mentioned the possibility of inflammation. Despite this, physically, I felt nothing and still don’t. My digestive system is working as it should.

The Bleeding Clinic – Wednesday 13th March 2019 – off to Guy’s to see the haematologist in the Haemophilia Clinic……but my questions were all to do with general haematology.

My Hb has been consistently low for a while and I’ve been taking Ferrous Fumarate for over 5 years. My GP had then upped my dose to two tablets/day. I thought this was considered to be a short term measure. Would an iron infusion be more effective? The haematologist looked at my last blood test results. He agreed that the Hb was low and so were my white blood cells. Another bone marrow biopsy would be worthwhile to check for any changes since 2013.

I mentioned that there was a proposal that I should start Vedolizumab. Did my pre-existing conditions of thrombocytopenia (low platelets) and PVT (Portal Vein Thrombosis) need be considered? He consulted the online medication “bible” and said that Vedo was gut specific and should not interact with the other conditions.

He would book another appointment with the general Haematology clinic but in the meantime he would get me to provide blood and urine samples. I explained that the IBD Dept. required, and had already requested, specific blood tests. Would it be possible to get these done at the same time? Yes it would and so it was off to see the phlebotomist who removed nine full phials of blood (my previous record being seven).

…then off to visit the new public roof garden before getting lunch

View towards Canary Wharf from the Roof Garden at 120 Fenchurch Street

Next steps – off to see my gastroenterologist on 15th April

Call My Bluff

It started with a routine calprotectin test in November 2015. The result came back at just over 100, which equates to “mildly elevated”. Subsequent tests continued the upward trend. A graph (I do love a good graph) is the best way to show the issue.
Calprotectin Test Values

To try and explain this ever rising trend I underwent a number of MRIs and colonoscopies but nothing untoward was seen and my gastros were stumped. Life continued as usual and my remission appeared to be continuing despite the confusing calpro figures. Could there have been something causing a false positive reading? I set about trying to find a plausible answer (that didn’t involve inflammation) but without success. In the meantime I was wondering why my Hb level was on the low side. Cue another graph…

Hb Values

It wasn’t until late 2018 that I went to see my gastro again, ostensibly to discuss the Hb level and a recent bout of “bathroom dashes”. Was it time to re-investigate the calprotectin issue. There was one section of my gut that hadn’t been seen by camera, namely the small bowel between duodenum and the anastomosis site (where my terminal ileum had been). I was booked in for a capsule endoscopy on 18th November. The full description of the procedure and the wait for the results can be found here (opens in a new window) – http://www.wrestlingtheoctopus.com/fantastic-voyage/ .

When the report was finally available my consultant emailed me to say that “there is some inflammation in the small bowel – it’s not terrible but it must be the source of the calprotectin. I  think it is probably enough to warrant treatment which we should discuss. Shall I arrange an appointment?” Yes, that would be a good idea. The date has come through for mid-April. A few more weeks wait before finding out the way ahead….

Then, last Thursday, I was rather surprised to get a phonecall from one of the IBD nurses. She told me that it had been decided, at the weekly virtual clinic (which I think must be like an MDT), to start me on Vedolizumab and they needed to book me in for a blood test and chest x-ray prior to my first infusion. I explained that this would be a major decision, as I had been Crohn’s drugs free for several years. My preferred option was to stay that way. I would want to discuss any new drug/treatment, at the forthcoming gastro appointment, prior to starting. (I have subsequently had an email from my consultant agreeing with this course of action. It appears that the IBD nurses had been very efficient in trying to arrange approval for the drug prior to the appointment)

Bluff

I’m now in a position that many other patients are confronted with – the end of remission. I’ve written many times about maintaining a laid back, positive attitude. Now my bluff is being called and I need to prove to myself that I can continue being calm and unstressed about my health.  So far so good. If my quality of life was being seriously compromised and I was unable to function properly then the decision to restart medication would be a simple one…..but it isn’t apart from…..

….an ache in my right hand side (URQ). It’s more annoying than being anywhere near painkiller territory. What could be causing it? As with most things #IBD related there is always a high degree of uncertainty. I consider this to be one of the major psychological burdens we bear.

I’m currently testing an IBD Self Help programme. It is broken down into modules which are completed over a number of weeks. I haven’t reached the “Pain” section yet so I’ve been relying on the old technique of visulaising the pain in an attempt to lessen its impact. That’s easier to do if you know there is only one cause but in my case it could be : the recurrence of the old ache around my anastomosis due to adhesions/scar tissue; gallstones; getting the balance of Loperamide/Colesevelam wrong; or the new kid on the block – inflammation. (“New” may be an incorrect description given that the first high calprotectin values showed up in May 2016).

Jump

You might think that I would jump at the chance of starting treatment but I’m not so sure. If inflammation did restart in 2016 then I have thrived so far without medication, do I really need to start now? I don’t want to be dogmatic and take a “I’ve been taking no drugs so I’m not going to start now” stance without good reason. A fellow Crohn’s patient asked what made me hesitant? I suppose the answer is “side effects”. I have not needed to educate myself on the progress of the MABs/biosimilars and their potential downsides. I have a lot of catching up to do and need to understand how the benefits would outweigh the risks.

I have however had experience of drugs damaging other systems or not working. I took Azathioprine for 9 years, with no apparent side effects, then my platelet count suddenly plunged. The concensus was that the Aza had attacked and permanently damaged my bone marrow which in turn reduced its ability to produce platelets. No more Azathioprine. I then tried Infliximab but after 3 doses my symptoms showed no improvement and I went under the surgeon’s knife (2010).

Platelet Count

Before the mid-April appointment I need to research Vedolizumab; ask other Crohn’s patients for their experiences and come up with a list of questions for my gastro. I’ve made a start……

Questions, questions….

I would usually leave my list until a couple of days beforehand. Given that this will be a major decision point in my Crohn’s experience I thought it best to start writing now.

  • What exactly did the capsule endoscopy show in the way of severoty of inflammation and locations? Was it confined to the small bowel?
  • What was the gist of the discussion that resulted in proposing Vedo?
  • My QOL is good apart from an ache on my right side
  • Looking at the calprotectin levels it suggests that inflammation started somewhere between November 2015 to June 2016 but was not apparent on other tests
  • It has been 6 months between having the capsule endoscopy mid-November and the appointment. That suggests it does not need immediate treatment.
  • What if I decide not to go back onto Crohn’s medication at present?
  • How will Vedo help me now? …and in the long term?
  • Are there any side effects I need to know about? Are any of these relevant to my other conditions?
  • Ongoing monitoring regime? Frequency?
  • How good a measure would calprotectin be for small bowel Crohn’s?
  • Does the efficacy of Vedo differ as one gets older? Do the side effects change?
  • Is there the opportunity to have infusions at a local hospital?
  • Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
  • What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?

(If I have missed something obvious or you have beem in a similar situation then please leave a comment or respond on Twitter @crohnoid – Thanks)

20 things that can help you survive Hospital

Here’s my updated list of twenty things that have made my stays in hospital (UK NHS – 2 bowel operations; 1 emergency admission with 2 weeks recovery in ward; 1 day/night in A&E) 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.

(The original post included mobile ‘phone and charger but I’m assuming that this goes without saying nowadays)

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 too quickly I prefer to take a separate music player. (My trusty iPod nano is still going strong after more than a decade)

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. (Our local hospital has taken the initiative and started handing these out to patients.)

The best time for dozing is mid-morning, after the doctors have done the ward round, you’ve had a washdown/shower and your bed is freshly made. A close second is early afternoon after lunch but 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 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, Guantanamo Bay style. I try and use NHS pyjamas for the first 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&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 at the back of your medical gown where you haven’t quite managed to fasten the tie-ups.

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 your 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 for reading 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 anyone 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 so I’ll quote directly from a comment a fellow patient sent me  :

“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 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 Mrs.A – you may want some sanitizing wipes to for 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 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 or Wi-Fi access you won’t need any of this). The fee for 2 weeks worked out a lot cheaper 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, quite often, missing.  I’ve found using my own headphones a better option.

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.

(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.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 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.

Fantastic Voyage

Fantastic Voyage – 1966 Sci-Fi Film

A New One On Me

Over the years I have undergone many different tests but the one that had eluded me to date was the Capsule Endoscopy. Maybe that’s the wrong to put it. Might be better to say that “so far I hadn’t needed one”.

So what changed? The last time I saw my gastro we discussed the apparent conflict between my feeling fit and well (good QOL), clear colonoscopies & biopsies but test results suggesting the opposite – calprotectin = 1300 ; Hb = 11.0 ; gradual weightloss >15kg. We had discussed this before. He had even asked a colleague to carry out a second colonoscopy in case he had missed something. Both of them were stumped so we agreed to park it. I thought now was the time to ask for it to be investigated further. The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and the point where my large and small intestines had been rejoined. He agreed.

We had previously discussed using a self-propelling endoscope but a “pill cam” sounded a less daunting solution. The concern about using a capsule was the risk of it becoming stuck at a narrowing. A radiologist would be asked to review my last MRI scan for strictures before the endoscopy was ordered. The cost of the capsule endoscopy procedure to the NHS is approx. £500.

All must have been well as I got a call from Endoscopy Appointments to agree a suitable date  for the procedure. A couple of days later the instructions arrived in the post. Very similar to having a colonoscopy but with none of the dreaded prep solution needed. The leaflet also listed the medications that would have to be put on hold. These included stopping iron tablets and Loperamide 7 days out. Iron tablets – no problem, but Loperamide – that would be the one instruction I wouldn’t be following. The thought of taking a trip to London having not taken Loperamide for 7 days was not even worth considering and would have put in jeopardy attending the Big Bowel Event at the Barbican on 16th November.

Monday 19th November 2018 – GSTT Endoscopy Department

After the glorious weather over the weekend it was a disappointment to arrive in London on a dull, rainy day.  The walk to the hospital took me past a number of foodstalls that simply reminded me that I hadn’t eaten since 8:30 the previous morning or drunk anything since 22:00.

Food Stall
One of the food stalls that have sprung up along the South Bank

I arrived at St.Thomas’ Hospital and, after a few minutes’ wait, was collected by the specialist nurse. She asked the usual questions :

“When did you last eat?” “8:30 yesterday”

“When did you stop taking iron tablets?” “7 days ago. Why is it so far in advance?” “They blacken the walls of the intestine and can give patients constipation”

I explained that I hadn’t stopped taking Loperamide as, for someone who relies on it every day, any thought of stopping for 7 days was a definite non-starter.

“What other medications are you on”  I went through the list

She outlined the procedure and I was able to ask the questions. The main one was “can the capsule be used to judge the condition of esophageal varices? If it can then should I cancel my conventional Upper GI endoscopy booked for the week before Christmas?”.  She explained that a capsule can be used to look at varices but it would need to be a different type from the one I would be swallowing today.

She then ran through the risks of the procedure. The main one being the capsule becoming stuck and the possible means required to extract it, the worst scenario being surgery. I signed the consent form.

There are several different makes of capsule system available which all work on similar principles. There are also different types of capsule for specific tasks. There is even one with a camera at both ends.

The more advanced ones have higher resolutions & frame rates and some communicate with the recorder unit wirelessly, without the need for sensors. St.Thomas’ employ the MiroCam system which  uses an array of sensors to pick up the signal from the capsule and send it to the recorder. (It’s the same unit that the BBC used for the live endoscopy that they broadcast as part of their “Guts: The Strange and Mysterious World of the Human Stomach” in 2012.)

MiroCam receiver and sensor array

The first task was to attach the numbered sensors in the correct positions around the abdomen. I can see why wireless communication is the future. (I wouldn’t normally post a selfie of my abdomen, in the interests of good taste, but to illustrate…..)

It’s not until you see a photo of your abdomen you realise the marks that have been left by surgery, laparoscopic not keyhole

Once they were in position the nurse produced the capsule and asked me to hold it between my fingers then pass it in front of the recorder unit. A bleep showed that they were now paired. As she had already input my information into the unit the display showed my name, hospital number etc.

The capsule – measuring 25mm long x 11mm dia.

It was time to see how easy swallowing a capsule would be. The answer – very easy. At 11:40 I took one gulp of water and it was on its way. The nurse switched on the live monitoring function and we watched it enter my stomach. To save battery power she then switched it off and I didn’t have the courage to try it myself in case I ruined the whole procedure. (…and what if I had seen something that, to my eyes, looked wrong? A surefire way of inducing stress)

As the unit has a 12 hour battery life she said the unit would switch off at 23:40 and I could then remove the sensors. The recorder unit would then need to be returned to St.Thomas’. I explained I was not available the following day so we agreed that I would take it back on Wednesday. Two weeks later the results should be available. When would I be able to eat and drink again? Coffee two hours after swallowing the camera and then a light meal after another two hours.

If it had been decent weather I would have set off on a long walk around London, as light exercise helps the transit of the capsule, but I decided I would rather get home in the warm. I took a short walk to College Green (the area outside the front of the Houses of Parliament) to see if there was a media scrum due to some new development with Brexit but there wasn’t so jumped on the Tube to Blackfriars and took the train home.

From Platform 1 at Blackfriars there’s a good view of the City and the new buildings going up

True to the nurse’s word the unit switched itself off at precisely 12 hours from the start of the procedure and I was able to peel off the sensors with remarkably little pain. The camera is not retrieved after the procedure (although there are some types that do rely on the patient “collecting” it and returning it  to the hospital for analysis).

Wearing the receiver unit took me back to having a stoma as it was hanging in the same position as the bag and the adhesive on the sensors gave a similar sensation to that of the stoma backplate.

Partial Update

The analysis of the video was due to take 2 weeks from handing the recorder unit back but nothing was forthcoming. I contacted my gastro consultant who said he would chase it up but after 4 weeks still nothing. I knew I would be visiting the Endoscopy Dept. again on 18th December, for my annual Upper GI scope (looking for esophageal varices related to portal vein thrombosis)  so I would ask then.

The endoscopy was being carried out by the head of the Gastro Dept. so I asked him whether he could find my video results on the system. He went off to check the status. By the time he returned I had been prepared for the scope – xylocaine spray (burnt bananas) to back of throat; mouthguard in position; Fentanyl injected. I was unable to speak. Luckily they had held off with the Midazolam so I was, at least, still conscious!

He told me that the video was being checked now but he had seen the first half of it and appeared to show Crohn’s in my small intestine. A nice Christmas present! I would have to await the full analysis before discussing the way forward. I emailed my gastro consultant to tell him the news. He replied that he would keep an eye out for the report.

…and with that the Midazolam was injected….zzzzz

When Will It Be Resolved?

The report took a long time to finally emerge and in another email my gastro said that it did indeed show that Crohn’s had re-surfaced in my small bowel in the form of mild to moderate inflammation. This was a disappointment as I had been in remission since 2011. An appointment has been arranged for 15th April to discuss the treatment options. If feasible I would favour the “do nothing” option. My thoughts on the end of remission and the questions I have for my gastro are in a separate post (opens in a new window) – http://www.wrestlingtheoctopus.com/call-my-bluff/

The Report Finally Arrives

In mid-March a printed copy of the endoscopy report, in glorious living colour, arrived in the post. Whilst I found it fascinating I struggled to understand exactly what the images were showing.

I was intrigued by the transit times : 15 minutes to make it through the stomach; 2 hours 52 minutes travelling through the small bowel; and 8 hours 51 minutes in the colon. These were classed as being “within average range”.

Luckily there was a summary report; unluckily there it was in black and white “…with a background of Crohn’s these are in keeping with mild to moderate active disease“.

Capsule Endoscopy Report – from esophagus to ileo-caecal valve

A Patient’s Dilemma(s)

When 10th October 2018 arrived I had reached the 8th anniversary of my ileostomy. When I left hospital I had learnt two things about potential future surgery – the average time between operations for Crohn’s patients is 10 years; recovery time is improved by the fitness and weight of the patient but increases with age. Based on these two principles I set myself  the target of boosting my exercise and reducing my weight to around 80kg so that should I need to go under the knife again then I was in the best possible state for a speedy recovery.

Having taken the decision to retire early the exercise is mainly physical work around the garden, mucking out stables and taking long walks photographing London (when the opportunity arises). I’ve been achieving my targets and feeling “very well”. There have been a few “blips” along the way but these would come under the heading of EIMs (Extra Intestinal Manifestations – see previous posts). I’ll stick with “very well” from a Crohn’s point of view.

…and then a few weeks ago the unplanned visits to the bathroom started again. They had been happening sporadically over the 8 years, lasting a day or so on each occasion. so at first I wasn’t concerned about the latest occurrence but when it  reached the third day, without any improvement, it was time to take action. I emailed my gastro consultant to ask his advice. “Ask your GP surgery if they can carry out stool cultures to look for possible infections and C diff” was the reply. Yes, my surgery could do the necessary tests upon receipt of a fax!!! from St.Thomas’. (A fax? How last century. What’s wrong with an email?)

I went and saw a GP who suggested increasing the Loperamide to the maximum I’m prescribed – 12 daily. After a further couple of days everything returned to normal. When I went to collect the test results they were negative so, as usual, nothing to explain the problem. However one of the GP’s receptionists commented that she hadn’t seen me for a while and thought I didn’t look well. She suggested I should see a GP again. There was a slot that afternoon and after discussing my case  I suggested that a blood test might be a good idea (having not had one for over a year).

When the results came back there were no real surprises except for my Hb which was 112. When I checked my previous results I had been around this level for 2 years. To me it seems low and the Ferrous Fumarate I have been taking for many years has had no effect. (Is it not supposed to be a short erm measure to correct an imbalance?`) I had mentioned it before to both my consultants and GP and it did not seem to cause them any great concern.

Call it serendipity but I just happened to see a conversation on Twitter between an eminent Professor (who specialises in iron deficiency) and one of the BBC health programme presenters that tend to dumb down health issues for the masses. His point was that simply taking iron supplements was not the solution to the deficiency. I joined the conversation and mentioned my particular issues. I got a prompt and unequivocal reply – “You, sir, need treatment”.

…and so to my dilemma(s). How much store can be put in my feeling well and being able to carry out any activities I wish to undertake? Do I really want to undergo another range of tests in an attempt to explain, for instance, my calprotectin level of 1300? I’ve already been through  multiple colonoscopies, biopsies and scans – all showing no evidence of the Crohn’s having restarted. Is “do nothing” a viable option or would such a “pathway” not even be contemplated in some institutions? Do I want to start taking a new drug treatment for my Crohn’s just in case it is becoming active? The standard treatment would have been a maintenance dose of Azathioprine but that has already attacked my bone marrow and caused my platelets to plummet. The most likely choice would now be one of the biologics with the possibility of going through a long trial and error process until the right one is found.

…and my final dilemma is how to broach the subject of opinions I have read on Twitter, not even some medical web page, without giving the impression that I do not trust my present treatment.

The Importance of Follow-up Letters

Follow-up letters from appointments are an important part of your health records. They should contain what was discussed with your consultant, any conclusions arrived at or changes in medication etc. By default Guy’s and St.Thomas’ write to your GP after each appointment and copy in the patient under cover of a note that states “this is primarily a communication between medical professionals” (which I think is another way of saying “you probably won’t understand all the words we use”).

Now it has to be said that not all Departments stick to the “default” and I have had a couple of occasions (both with the same department) where the lack of letters caused issues. This is where my blog posts recording the latest appointment have proved more than just an exercise in self indulgence and why I read them prior to my next hospital visit.

The first time this happened was in March 2013 when I attended a regular appointment and was greeted by a doctor I hadn’t met before. We went into one of the side rooms where my notes were open on the desk. He introduced himself and said that he had been reading the notes to familiarise himself with my case. I had been hoping to see my usual consultant as I liked continuity and had issues with the lack of follow-up letters that I needed to raise with them. Unfortunately they were unavailable for that day’s clinic.

The new doctor said that, having read my notes, it was apparent that the condition I was suffering from was rare and started to discuss my low platelets. He noted that I had last been seen in October 2012. I stopped him in his tracks and said this was a clear reason why up-to-date notes and follow-up letters were so vital. There had been two further appointments since October and the platelet issue had been “parked”. A new, far more serious, condition had arisen – PVT (Portal Vein Thrombosis). This was now the priority.

I explained that this was an important appointment for me as I was expecting to run through my risk profile and at the end of it make the decision on whether to start blood thinners. My regular consultant had said they would discuss my case with th Department’s Warfarin expert, one of the professors.

At that point I started to think that this was all going to end up badly. I needed to kick start a reaction so I asked whether the professor was in the unit that day and what I needed to do to see her. Clearly this was never going to happen but it was worth a try! The doctor said that he would see if he could speak to my original consultant.

A few minutes later he returned with another consultant. I recognised her name as my clinic letters always stated that I was under her ultimate care. Putting two and two together she must have been the next one up the food chain from the doctor I usually saw. I went back over my expectations from this consultation. She explained that she worked closely with the “Warfarin Professor” and they jointly reviewed patients.

She ran through the risk factors and having looked at my notes and results, on balance, she would not recommend Warfarin yet. As far I was concerned it was the “right” answer. If there was a low risk of clotting then I was prepared to take that risk to avoid having starting yet another medication. Decision made, no Warfarin.

A month later I was still awaiting the missing follow-up letters. Time for some further action. I sent an email to the head of department (whose address I found on their web page). I apologised for contacting her directly but explained that raising the issue in clinic was having no effect. I added: “I thought it was therefore best to go straight to the top so that you can delegate any necessary actions…….” and briefly explained what had happened at my last appointment.
I hit the send button and got a very prompt response, 20 minutes later, apologising and saying it would be looked into.

The four missing letters arrived shortly afterwards, with an apology. I checked their contents against my blog and they were accurate records of the appointments.

From the above I’d like to pass on two thoughts : 1) that keeping your own record  is important and can prevent a waste of your time and a waste of NHS resources going over old issues that are already “parked”; 2) if you are having a problem with getting follow-up letters then go to the top and ask for their help. I have found those four little words “can you help me?” have opened up many situations whilst negotiating the pathway s through the NHS.

(I’ll leave the account of the second missing letter issue for another time. Suffice to say that I could have ended up having a third bone marrow biopsy! Not something I would recommend)

Top Trumps

The last blog was triggered by spotting an “I’m grateful for my IBD” post, this one is about another trend I’ve noticed – “Illness Top Trumps” or “my illness/condition is worse than yours”.

It’s played over SoMe, especially on Facebook forums. The “game” usually starts with a post along the lines of “IBS is worse than IBD” or “Ulcerative Colitis is worse than Crohn’s disease”. The ensuing discussions rapidly become very heated, abusive and always completely miss the point that two patients may have been diagnosed with a disease but experience its effects in vastly different ways. It’s QOL (Quality of Life) that matters. How much does the condition prevent you from living a “normal” life? Has it caused you any psychological issues?

The diversity of paths that each of us travels was made clear recently with the Twitter hashtag #MyIBDHistory. A friend of mine (and soon to be fellow blogger – @bottomline_ibd) had this great idea (whilst idly daydreaming on a roasting hot afternoon) – could she condense her IBD history into just one tweet of 280 characters? Having succeeded she decided to release it on Twitter as the “#MyIBDHistory Tag Challenge”. Over 1,000,000 impressions later it has really taken off and resulted in many IBDers taking the challenge and posting their potted history.

The histories make fascinating reading and it’s very humbling when you realise just what some of the respondees have gone through, or are in the process of going through, under the catch-all umbrella of IBD. Each person has presented their story in a slightly different style and what has beem particularly gratifying is that the responses from others have been very supportive without a hint of oneupmanship.

There have also been positive reactions from HCPs who have also found the Tweets inspirational and informative. If you get a chance they are well worth a look. Personally I realised that despite having Crohn’s Disease for many years I have escaped lightly and for many years my QOL has been virtually unaffected.

There is another variation on Top Trumps based around “what I’ve got is so unusual that I’m very special”. These do not usually descend into conflict as who wants to argue with a special one?  (unless it’s Jose Mourinho). There’s a corollary to this – EIMs (Extraintestinal Manifestations). These may potentially have a far worse effect on QOL than the original disease. An EIM, taken in isolation, may be a relatively common issue but many patients will suffer from more, sometimes many more, than one EIM. By looking at their WHP (Whole Health Picture) the combination of multiple EIMs, together with the original disease, may add up to them also being “special”. If you would like to see an example then visit this link – http://www.wrestlingtheoctopus.com/the-jigsaw-diagram.

Confession time –  I have to admit that I’m not squeaky clean when it comes to oneupmanship. I have mentioned my surgery from 2010 many times (what do you expect from a Crohn’s patient blog) but haven’t been able to stop myself from quoting the surgeon who said it was “one of the most complex operations” that they had ever undertaken. There, I’ve done it again. I’ve tried analysing why I feel the need to mention this piece of information and why it is one of the few aspects of Crohn’s that makes me emotional. At first I thought it was a case of Surgical Top Trumps – “my operation was more difficult than your operation” but I’ve thought about it very long and hard and concluded it’s my sheer awe and surprise that a body and mind, my body and mind, could undergo such an ordeal, come out the other side, survive and thrive.

 

Grateful?

Every so often a post or podcast appears along the lines of “Why I’m grateful for my IBD” and every time I see those words I wince a little. Am I swimming against the tide? Am I the odd one out here? There is not one aspect of this disease (or its EIMs) for which I have any sense of gratitude.  I’m not doubting  those who are “grateful”. I can understand that,  just like IBD itself,  there are many “flavours” of coping mechanism and if it works for them then fine.

I’m not denying that I have met some fantastic people from the IBD Community, both online and in person, but then I’ve also done the same through work and hobbies….and I haven’t needed IBD to give my life direction, focus or convince myself I have staying power.

Having said I’m not at all grateful I quickly need to counter that by saying neither am I resentful or regretful. The worse thing I could do is get into an “if only” mindset ie. “if only I didn’t have IBD I could have….”. I have thought long and hard about this subject and made my peace. I can’t think of many things worse for one’s health/mental health than living a life of regrets.

Have I always taken this attitude? The honest answer is “I don’t know. I can’t remember“. My medical memory was reset around 2009 and before that I can recall very little. I have now managed to fill in the physical events with the help of a medical records, photo library and my wife’s amazing memory for dates. I cannot do the same for my emotions or feelings apart from knowing I was sh*t scared of going under the knife but I don’t think I had any bitterness at having Crohn’s.

When surgery became inevitable in 2009 my emotions could have gone in one of two directions. I  would have understood if i had become very anxious, given my attitude to surgery, but instead I went into a very relaxed, laid back mode. I’ve manage to maintain it ever since. Clearly a prolonged period of remission has helped but a couple of serious EIMs could have derailed it.

IBD has certainly taught me a lot both about the disease itself and ways of living a relatively normal life despite of the everyday issues that it raises….but “grateful”? Definitely not.

..but why the Octopus?

When I was looking for a book title and a name for my rejuvenated blog I wanted something slightly “off the wall”. Whilst I was writing the chapter about surgery looming I came across the consultant’s explanation of the CT scan he had in front of him. “It looks like you’ve got an octopus in there.” That set my imagination running and I pictured the scene in theatre where the surgical team had “released the octopus”, cut out the offending bit and then wrestled the remainder back, safely, into my abdomen.

Search for title over and seed of idea for book cover sewn.

As I neared the end of writing it occurred to me that there was a second octopus to be wrestled. It’s potentially a problem for all of us that suffer from chronic illnesses, namely, managing our route through the multiple tentacles of the NHS system with multiple consultants, procedures, specialities and clinics. Add to this the lack of a universal patient record system that can be accessed in different hospitals and it is apparent it’s not neccesarily a simple process.

Life was simple when being treated by one gastro team at one hospital. It wasn’t until 2010 that another hospital entered the equation as my local hospital were unable to cope with the complexity of the forthcoming surgery and referred me to St.Thomas’.

This calls for a diagram –

My Personal Octopus

Some “tentacles” act in a co-ordinated manner; others seem to be a law unto themselves. Some tentacles communicate well with the others, unaided; others need a helping hand.

For example, if you’re booked to go for a procedure, let’s say an MRI scan, then it makes sense that your next gastro appointment is after the radiologist has written the follow-up report. Similarly, if you’ve had biopsies taken during a colonoscopy, you want the results to be available before you meet your gastro. This is not rocket science but if not co-ordinated then you simply end up wasting valuable appointments, consultant’s time and, just as importantly, your own time.

In the past I’ve let the system take its course but with mixed results so now I like to give it a helping hand. This is getting more difficult with the apparent demise of the dedicated medical secretary. For several years, when the frequency outpatients appointments and procedures had reached its height, I had the pleasure of dealing with a truly exceptional one. Let’s call her Sally. Any issues would be quickly resolved by a  simple exchange of emails. Sadly she left the NHS.

Nowadays I contact my consultant directly, but sparingly. I don’t particularly like doing it as I know he is already exceptionally busy. I can justify this approach to myself as in the long run time/resources will be saved by avoiding abortive appointments.

I suppose you could now say that I am “massaging the octopus” rather than an all-out Greco-Roman grapple.

 

 

 

My automedicography – a personal view