Category Archives: Crohn’s Disease

Haemophilia Clinic

I have found writing a short account of my outpatient appointments has been hugely beneficial as the doctor’s follow-up letters cannot cover everything we discuss and I will certainly have forgotten it by the next appointment. (I’ve also included some photographs from the walk I took through the City of London after the clinic)

Wednesday 7th February 2018 – Guy’s Haemophilia Clinic

A fairy early start to get to Guy’s Hospital by 9:35am for a visit to the Haemophilia Clinic, even though I’m not a haemophiliac. I had first been alerted to this appointment when I received a text message, before Christmas, followed a few days later by a confirmation letter. On arrival I had my blood pressure and pulse rate taken then settled down into a comfy chair, expecting a long wait. Guy’s have adopted the same large TV screens as St.Thomas’ for alerting the patient when its their turn to see a doctor. I watched for my name to appear then I heard it being called out.

I was greeted by a doctor I hadn’t met before. After the initial pleasantries she asked “Do you know why you are here?” Tempting as it was to reply “Do any of us know why we are here? Are we the creation of some omnipotent deity or the product of thousands of years of evolution?”, I opted for “No”. Although I tempered this with “…it’s probably to do with a bleeding management plan”. Correct, and brought about because of my low platelet count.

I don’t want to sound dextraphobic but when I saw that the doctor was left handed I knew it would be a good consultation. We went through my medical history. She was under the impression that I had undergone a major Crohn’s flare in 2012 so I was able to correct her and explain that in June 2012 my esophageal varices burst. She asked how I discovered the problem. I replied “Sitting surrounded by a pool of blood”.

Something I had neverbeen told about before is why Crohn’s patients are susceptible to blood clots. When undergoing a flare the blood becomes extra “sticky” to combat the inflammation. The portal vein carries blood from the gastrointestinal tract so is a common place for a clot to form. The body compensates for the blockage by growing new veins (varices) around the clot but a back-pressure can build up which in turn causes the spleen to enlarge and, in my case, varices to grow around the gallbladder. They would be an added complication should I need to have a cholecystectomy.

This enlarged spleen stores more platelets rather than release them into the bloodstream. Combine this with the damage to my bone marrow, probably due to Azahioprine, and it explains why blood tests show my platelets as below the optimum range. Many patients with low platelets do not notice they have a problem until the platelet counts falls to single figures. My count, between 60 and 80, is perfectly respectable for surgery or dental work so there would be no need for pre-surgery bleeding plan but post-surgery I would be prescribed a blood thinner for six weeks as this is the highest risk period for developing clots.

We then covered my decision not to take Warfarin which was reached by looking at the risk factors versus my wish not to take yet more medication. She thought I had made the right decision but noted that treatment has moved on and there are now medications that are much easier to take. Fine tuning dosages to achieve an acceptable INR was no longer an issue.

Up until now the concensus of opinion was that the clot in my portal vein resulted from peritonitis caused by a perforated bowel in 1979. I’ve always struggled with this explanation as a 30 year gap between cause and effect seems, to a non-medically trained brain, implausable. She thought it more feasible that it was caused by surgery in 2010. I accept that trying to get a definitive answer will not change anything but I would like to know, purely out of curiosity. I mentioned that whilst I would not wish to take up any NHS time on answering such a question I do happen to have a 2009 CT scan. I would need to find a “friendly” radiologist who would be prepared to have a look at the images and tell me if there was any evidence of a clot in the portal vein. Something to work on.

I then remembered to ask what the Upper GI doctor had meant by “if he can tolerate it” which was written on the prescription upping my Propranolol from 80mg/day to 120mg/day in an attempt to stop my spleen growing larger. What side effects should I be looking out for?  The answer – breathlessness and generally feeling unwell. So far I was coping OK.

She said she would like to see me again in 12 months rather than completely discharge me from the clininc. My next general haematology appointment was in March so she suggested it be put back 6 months. I thanked her for an enlightening consultation. We shook hands and I headed off for London Bridge..

The Long Walk

I had planned to take a brisk walk up to Finsbury Square for a coffee but it turned out to be anything but brisk. It took a lot longer than it should have done because I kept stopping to look at all the new buildings that have sprung up since I last went that way. I’m a sucker for glass facades.

Police sniffer dog patrolling around Guildhall
The wonder of computer designed structures
More architectural details
Salter’s Hall – one of the Great 12 Livery Companies
More steel and glass

After coffee I headed for Holborn and, again, made slow progress. On to Denmark Street to browse in the few, remaining guitar shops. then down to Trafalgar Square stopping briefly at The National Portrait Gallery to use their facilities.

Trafalgar Square – National Gallery

Total distance covered = 13.4km. I would have gone further but the cold was starting to get to me.

Next appointment – Gastroenterology at Guy’s on Monday 12th Feb

Loose Ends

It’s time to try and tie up the loose ends so that I can start 2018 with a clean slate. Where to begin?

Bile Acid Malabsorption – my pet subject. A much under-discussed issue that affects those of us who have had their terminal ileum removed. Having resisted starting yet another drug I finally decided to give in and try Cholestagel (Colesevelam) to give added control of the condition. Loperamide, on its own, seemed to be struggling. Apart from the odd set back the new tablets are working well and have topped up my confidence level. I’m only taking one with breakfast and one with dinner and matching that dose with Loperamide.

Calprotectin Testing – I was in two minds whether to even bother with another test as the last few results have been very high even though I’ve been feeling fine. My consultant said that I might as well be tested so I dropped a sample into the path lab with supporting paperwork. Two weeks later I contacted him to see if the result was back. He checked my record and all it said was “sample unsuitable”. What did that mean? I contacted the path lab and eventually was told that my sample was “unsuitable” because I hadn’t put my first name on the phial! Really? I am always very careful about putting ALL the relevant information of the label and that includes full name, Hospital No. & DOB. This was their reply :
 
“The following is the outcome of our investigation, our Central Specimen Reception (CSR) team only process samples following the Sample Acceptance Policy. Section 5.1 that states “The following minimum data set must be given for ALL laboratories: The mandatory three unique identifiers are: First Name, Family Name (Surname), Date of birth.”, and “Samples that fail to meet the mandatory criteria represent a significant risk to patient safety and raise serious concerns of sample integrity”.
 
They also stated that due to the “limitations of the IT system” it was only possible to mark a sample as “unsuitable”, not provide an explanation as to the reason. What I fail to understand is – if they didn’t know who I was then how come they knew it was my sample that was “unsuitable”. I would have thought that the combination of surname, DOB and unique Hospital No. should be sufficient for the testing to proceed. Normally I would take this further but, quite frankly, I don’t think they are worth wasting my time on. In the meantime I have provided another sample and handed it in to the IBD Nurses. I wonder whether that will be tested without issues.
MRI Pancreas Report – I had requested a copy of the last MRI report (October) but was starting to wonder if it had been such a good idea. Phrases such as “there is evidence of progressive portal hypertension with splenomegaly and upper abdominal varices” do not make for good reading to the untutored eye. Something to quiz the doctor about before the endoscopy.
 
Upper GI Endoscopy – 19th December 2017 – St.Thomas’ –
“Stick a camera down the oesophagus to see what’s occurring” day had arrived. The appointment was at 13:00 so plenty of time beforehand to visit a gallery (Dali/Duchamp at the Royal Academy) and do some Christmas window shopping (Fortnum & Mason).
Dali/Duchamps at the Royal Academy
Fortnum & Mason – Food Hall

 I arrived at the hospital early and took a seat in the Endoscopy waiting area, watching the boats passing up and down the River Thames. After a while a nurse appeared and explained that they were currently running about 15 minutes late but had four rooms in operation.  Each was doing a different type of procedure, some of which were a lot quicker than others. This was the reason some patients appeared to be jumping the queue. If only other clinics would adopt the same “keep the patient informed” approach. He then called my name to do the necessary safety questionnaire and give me a hospital gown to don.

 
I put it on over my clothes and sat in the inner waiting room. Another nurse appeared and explained that the Head of Department wanted to carry out my procedure (ominous) and they were waiting for him to arrive.  After a while a registrar appeared and took me into a side room to run through the procedure, the risks involved and to get me to sign the consent form. We then discussed my current health conditions and I gave her a copy of the MRIP report. I thought it was highly likely I would need variceal banding. She responded “Oh good, I enjoy banding” . I pointed out that I’d rather not need any as I didn’t want the 4 days of “sloppy” food that would neccessarily follow.
We discussed my ever enlarging spleen and I asked her what we could do to stop me becoming one large spleen on legs. She proposed upping my beta blockers (Propranolol) to the next level . I commented that given these other medical conditions, Crohn’s was the least of my worries. She concurred and with that we went into the theatre where the team, and the “top man”, were waiting.
Usually just the thought of the xylocaine (throat numbing spray ) makes me gag but this time I was fine. I didn’t even worry about the mouthpiece that guides the endoscope. A shot of fentanyl and the next thing I knew was waking up in Recovery being told by the nurse that I didn’t need banding. Result!
 ..but there is still one large loose end – cholecystectomy. I’ll defer thinking about that until the New Year

Whip It Out?

St.Thomas’ Hospital – Outpatients’ waiting area in Gassiott House

Friday 10th November 2017 – St.Thomas’ Hospital

My second appointment with the Upper GI surgeon to discuss a cholecystectomy. For some reason I was convinced it was at 10:40am and had arranged to be in Whitechapel at 1:00pm. When the text message reminder came through it showed the appointment was actually booked for 11:40am. If the clinic was running late then it could be a rush to get the other side of London on time.

I arrived early at St.Thomas’ so that I could drop off a sample at the path lab for calprotectin testing and to call into the Endoscopy Unit to ask why they had written to me about booking a procedure when I had already done so the previous week.

When I arrived at the Outpatients Waiting Area I had it in mind that as long as the clinic was running within 30 minutes of the alloted times I should be OK. The large screen showed the clinic was indeed running “approx 30 minutes late”. My definition of “approx 30 minutes late” does not stretch to over an hour, which is when my name finally appeared telling me which room to go to.

The surgeon apologised for the delay and for facing away from me as he read my notes on his PC. He asked how I was feeling. I explained that I was still getting the pain/ache on my right hand side but I believed it to be from scar tissue/adhesions after my ileostomy reversal. He asked if it the pain was worse when my bowels were full. I confirmed that it was and he replied that this tie in with my theory.

He ran through the results of the recent MRI Pancreas scan. It showed that no further gallstones had made their way into my biliary duct and that there was slight thickening of the gallbladder wall. More worryingly varices had grown around the gallbladder. He explained that this was to be expected due to the blockage of my portal vein and the blood flow needing to find alternative routes. The presence of these veins would make potential surgery more hazardous.

They had discussed my case in their Multi Disciplinary Meeting at St.Thomas’ but there was no clear cut decision on whether surgery should go ahead. He wanted to further discuss my case at a meeting with his liver specialist colleagues at Kings College Hospital.

I explained that I wasn’t against surgery, per se, but whilst I was feeling fit and generally well I would rather postpone it until absolutely necessary. We went on to discuss the risks of waiting. The major one being a further blockage of the biliary duct which could lead to pancreatitis (serious).

He stated that in a “normal” patient, with no other complications, the usual treatment would be removal of the gallbladder by keyhole surgery. Because of my concurrent conditions and previous surgery it would not be possible to use keyhole techniques. The choices therefore were to operate now to prevent a problem in the future “that might never happen” or to postpone the decision and review again in 6 months time. He was minded to go with this second option and that was also my preference.

I asked if, in the meantime, there were any measures I should take such as the adoption of a special diet. He replied that this would be appropriate if I was overweight but that was clearly not the case. I also asked about whether I should be avoiding alcohol. He said that he didn’t see any need for this providing I did everything in moderation, after all “life is for living!”

He handed me a 6 month follow-up request form to hand into reception but said if I needed to see him sooner then not to hestitate to call their senior nurse co-ordinator who would make the necessary arrangements. With that the consultation was over. He shook my hand and said goodbye

I left St.Thomas’ at exactly 1:00pm. Big Ben was chiming the hour as I made my way towards Westminster Bridge. 35 minutes later I arrived at my meeting which proved fascinating and enlightening.

When I thought back to my appointment I realised there were a number of questions that I had intended to ask. I will put them in an email to the co-ordinator :

How long is the waiting time for elective surgery?

How long is likely recovery/recuperation time from open surgery?

Please could I have a copy of the MRI Pancreas scan report?

Was the appointment that had recently come through from the Haemophilia Unit as a result of the Multi Disciplinary Meeting?

Next visit to St.Thomas’ – 19th December 2017 for my pre-Christmas esophageal varices check up. This will be my tenth endoscopy since late 2012. The taste of the burnt banana spray doesn’t get any easier to bear

Christmas Treat

I’m convinced that blogging is good for you. It helps get some order into your thoughts by trying to write a coherent post.

My challenge today is to link (in no particular order) : an unresolved medical test; distinguishing between the effects of long term medication and the ageing process; another meeting with the surgeon and overcoming the stomach churning effect of burnt bananas.

Last week I emailed my gastro consultant to ask if I ought to have another calprotectin test as the last one was in January. Under normal circumstances I wouldn’t even need to ask the question but there is an issue regarding this particular inflammatory marker. The last result was high (896), a continuation of an ever upward trend over the last two years. The “issue” is that there is no explanation for this trend. I am feeling well and two subsequent colonoscopies have shown no inflammation. Is there any point in having a further test if we don’t understand the result? My gastro responded that I might as well go ahead but agreed it did seem slightly illogical.

I’ll drop the calpro sample in at St.Thomas’ next Friday (10th November) when I’m off to see the Upper GI surgeon to continue our discussion on having my gallbladder removed. By then  the results from my recent MRI Pancreas scan should have been discussed at their Multi Disciplinary Meeting with a recommendation on whether to go for surgery as soon as possible or leave it until it becomes neccessary. Surgery will not be straight forward for various reasons, one of which is portal hypertension/portal vein thrombosis.

The monitoring process for this last condition consists of an annual Upper GI endoscopy(ies) to look for any esophageal varices that have grown and then obliterate them with “banding”. For the last three years the procedure has been carried out in the week before Christmas so it seemed a shame not to continue the tradition. This year’s scoping is therefore booked for Tuesday 19th December. That gives me seven weeks to try and get over my aversion to burnt bananas. Just the thought is now making me feel queasy.

(If you’ve had an endoscopy you’ll know what I’m talking about; if you haven’t then I’d better explain that the Xylocaine spray, used to numb the throat prior to introduction of the camera, tastes of burnt bananas. Feeling queasy again!)

The “banding” is complemented by medication. Omeprazole – a proton pump inhibitor – to help protect the esophageal lining by reducing stomach acid. Propranolol – a beta blocker – to reduce blood pressure.  This latter drug has a number of potential side effects including tiredness, cold hands, feeling breathless, impotence.

In an ideal world I would be totally drug free but the next best thing would be reducing down to the bare minimum. I’ve already turned down Warfarin to thin the blood and not yet stared Colesevalam for bile acid malabsorption. I would like to stop or reduce the Propranolol if at all possible.

The above raises a number of questions. If I am generally feeling OK should I even be concerned that one marker is giving an unexplained result? Should I pursue it and ask for further investigation to be done to resolve the issue or should I just accept it as one of “life’s little mysteries”? How do I tell the difference between the side effects of Propranolol and the natural ageing process. Can I reduce the dosage from 80mg/day? What new questions should I be asking the surgeon? This should become more obvious once I know what the oucome of the MDM was. Unfortunately my gastro didn’t atted the meeting so couldn’t give me a heads up.

…and finally I must use my will power to overcome the burnt banana feeling.

Next update after the meeting with the surgeon.

The Jigsaw Diagram

If you have read some of my previous posts or followed me on Twitter it is likely you have seen my “jigsaw” diagram in its various incarnations. I drew it, initially, to try and understand the relationships/causes between the various conditions I have ended up with. It then dawned on me that it would a great way of showing a new doctor or surgeon the complexity of the case on just a single page.

I attached it to a Tweet during a recent #patientchat to illustrate how I like to communicate. The very positive response that I received from both patients and doctors was very gratifying. There were a number of requests for the template I used. I have therefore removed the text that was specific to my case and saved the file in both the original Keynote format and a Powerpoint format.

If you click on the links below you will be able to download the appropriate file. Please feel free to use them however you wish. I hope you find it useful and would be grateful if you could credit me if you use it.

Medical Jigsaw – Keynote Template

Medical Jigsaw – PPT Template

…and then someone set me the challenge of making an interactive version. The link below will take you to an html version. When you click on one of the key elements it brings up the relevant supporting document. It’s not difficult to set up. The most time consumng part was removing personal details from the documents.

http://www.wrestlingtheoctopus.com/jigsawIA/

Good Doctor, Exceptional Doctor

A few weeks ago the BMJ blog published a guest post written by Sharon Roman, an MS patient. The subject : “What are the qualities that make for a good doctor and what can patients do if they’re missing?” (Link to blog at the bottom of this page)

It struck a chord as, over a period of 40 years, I have met a large number of doctors, consultants and even a few surgeons. Some have been good; some bad; some exceptional; some would be better off in research roles. I would put my current gastro in the exceptional category, especially if he is reading this just before performing a colonoscopy on me. But, in all honesty, there is nobody else I would rather have sticking a camera where the sun don’t shine. He can handle bends better than Lewis Hamilton.

One of the qualities that Sharon highlighted was the sense of safety that a good doctor gives the patient. It’s not something I had really thought about, not consciously at least, but I now realise that the feeling does underpin the best consultations and helps encourage open discussion. In a safe environment you tend to open up.

I’ve thought long and hard about the qualities which I believe elevates a good doctor to an exceptional one and this is at the top of my list. If pushed to sum it up in a single word it would be “adaptability” but it needs more explanation :

The ability to read body language and “language” language, if that makes sense. That’s picking up the messages in a patient’s demeanour and the words they use and then adapt how the consultation is structured.  Carefully choosing the words or medical terms that get used and ensuring the patient understands them. Definitely not sticking to a “one style fits all” approach or spending the whole appointment staring at notes on a computer screen.

(That got me wondering what training is given in “people skills”? I accept there will be the “naturals” who already have an inherent ability to adapt their consultation style but what of the others who have that innate skill in varying degrees. Are particular medical students steered towards research rather than patient facing roles?

..and then off on another tangent – do doctors have their own categories for us patients and how quickly do they decide which we are? How are we classified – hypocondriac?; realist?; fatalist?; verbal diarrhoearist; “would be medical expert” trained by Dr.Google?)

Half way through her post Sharon voices her fear that the exceptional doctors will become burnt out, victims of their own success. It’s a subject I have discussed with my own consultant as temporary referrals from other hospitals inevitably choose to become permanent patients and his department’s workload is ever increasing with static resource levels.

Shortly after reading her post I happened to hear an interview on the radio (BBC Radio 5 – Pienaar’s Politics) with an eminent surgeon who had become so stressed and disillusioned by the pressures within the NHS that he has left the profession and now bakes waffles in SW19. As he said “you only get one shot at this life”.

If we turn the question on its head – “What are the qualities that make for a good patient or an exceptional one?” There are the obvious – “takes their medication”,  “turns up to appointments” but are there other behaviours we can adopt that will ease the pressure on doctors’ time and resources? Maybe this would be a good subject for a future #patientchat.

Link to Sharon’s post – http://blogs.bmj.com/bmj/2017/09/13/sharon-roman-in-good-hands

Gallbladder Surgery? It’s Not That Simple In Your Case

My second outpatient trip to London in a week and, unlike Wednesday, a beautiful clear morning without a cloud in the sky. I needed to be at St.Thomas’ by 9:00 to see a surgeon about having my gallbladder removed. It was an early start and my first waking thought was to wonder if eating a complete can of baked beans for dinner the night before had been such a good preparation for a journey on public transport. Hopefully a couple of extra Loperamide would do the trick.

It wasn’t until I parked my car near the station that I remembered where my mobile ‘phone was – on the dining room table. Was this going to be a liberating or frustrating experience? How was I going to let my wife know what the surgeon had said? How was I going to let my brunch companion know where and when we should meet? (At least I had my camera with me).

Having spent the train journey pondering this dilemma I arrived at St.Thomas’ outpatients’ department without having reviewed my list of questions or the copies of the ultrasound scans and follow-up letters I took with me. After a few minutes my name appeared on the laser display board and I made my way to the room indicated.

St.Thomas’ Hospital – opposite the Houses of Parliament

I had been expecting to meet the surgeon himself but was met by his registrar. I explained to her that I really wanted to see the surgeon and she said she would ensure I could spend a few minutes with him before I left. She started to go through my medical history. To speed up the process I produced a copy of the diagram I had drawn showing the key points in 40 years of Crohn’s and its companions. She was very impressed and no doubt I started beaming like a Cheshire cat. That soon stopped with the next set of questions.

40 Years of Medical History – on a page

I thought I was there to discuss whether surgery was a good idea, or not, and the possible complications. She was clearly running through the standard pre-operative assessment checklist – “Are you mobile? Can you wash and dress yourself? Can you manage household chores on your own?” I answered “Yes” to all the above but of course the answer to the last one was “No, I can’t. That’s why I got married”. (I’m joking!). I told her that my preferred option was no surgery until absolutely necessary as it would be too disruptive at present.

We then started to discuss my medical history in detail. She examined my abdomen and complimanted me on the quality of my scars. At this point it was obvious that surgery wasn’t going to be simple. She went off to see if the surgeon was available, taking the diagram with her. I think they must have then discussed its contents as about 10 minutes later they both returned and the surgeon introduced himself. He also liked my diagram and quickly ran through the key points.

He asked me to describe the circumstances that led up to me being there. I recounted the incident of violent shivering and turning yellow that occured at the end of January. He asked if I felt any pain (everyone has asked that one) and I was able to say I felt nothing at all. From that he concluded that a small gallstone must have temporarily lodged in my bile duct, long enough to cause the symptoms, and then quickly passed through before the pain started.

I went through the discussions I had had at my local hospital (East Surrey) and their suggestion that I needed to be seen by a specialist liver unit. I wondered why one of their concerns was liver cirrhosis? He replied that whenever a patient appears with esophageal varices / portal hypertension / portal vein thrombosis then it would be assumed that liver cirrhosis was the most likely cause. My latest Fibroscan result was 7.8 suggesting that cirrhosis was at a low level. I explained the hepatologist’s theory that the PVT had been caused by peritonitis following perforated bowel surgery in 1979. He thought this was very feasible.

Usually gallbladder removal is a same day operation using keyhole surgery. In my case it would be a lot more complicated. He noted my wish to delay surgery for as long as possible and was minded to agree with me. He wanted to present my case to their departmental review meeting to get other opinions. In the meantime they would arrange for me to have an MRCP scan (magnetic resonance cholangiopancreatography), a targetted MRI scan that looks at the biliary and pancreatic ducts. This would determine if any other gallstones were lodged in the bile duct. He asked me to book a further appointment for 6 weeks time so we could discuss the results and the meeting’s conclusions.

I had some final questions :

Will a cholecystectomy make my bile acid malabsorption worse? “We simply don’t know”.

Am I likely to suffer from post operative ileus (lockdown)? “Possibly”.

If we leave surgery until it is absolutely necessary what could the consequences be? “Anything from pain to having to prepare one’s relatives for bad news”.

Timescales for elective surgery? “Surgery would be carried out in the specialist Liver Unit at Kings College Hospital so the timescales would depend on their waiting list”.

I left any further surgical questions for our next meeting. His final action was to introduce me to their senior nurse co-ordinator who acted as a single point of contact for their patients. If I had any questions or concerns then I should call or email him.

….and my ‘phone predicament? Don’t bother with BT public telephone boxes – they take your money and then don’t work. When I arrived at St.Thomas’ I explained my problem to a very helpful guy behind the Patient Transport desk who allowed me to use his extension to make the necessary calls after my appointment.

….and so to brunch and a discussion on topics for the next #IBDHour Tweetchat.

Next appointment – Friday 10th November. Watch this space….

Elective or Emergency?

I’ve often mentioned that I find blogging a great way of keeping objective about the various medical issues I encounter, hence this post which is a prelude to a meeting with a new Upper GI surgeon in London next Friday.

Why?

At the end of January I had a bout of jaundice. Whilst I turned yellow there was never any of the pain that usually accompanies it. I was in two minds whether to go to our local A&E but eventually gave in and made my way down there. To cut a long story short, a few weeks later I had a follow-up appointment with Upper GI consultant who suggested cholecystectomy (gallbladder removal). He was, however, concerned about some possible complications and for this reason recommended the surgery be carried out in a hospital with a specialist liver unit.

I exercised my patient’s right to choose which NHS hospital to be referred to and in my case the choice was simple – Kings College Hospital. I asked around and was given the name of an Upper GI surgeon who is highly recommended and has the added bonus of also working at St.Thomas’ and therefore access to my notes.

(There was a similar situation in 2009 when I found out I needed an ileostomy. The colorectal surgeon did not consider East Surrey Hospital had the facilities to cope with recovery from such a complex operation and so was sent to St.Thomas’ . I moved my outpatient care there in 2011.)

Preparing to meet the surgeon for the first time

The appointmet is set for 9:00am next Friday (22nd September). Before then I need to have a list of questions and any relevant documents. I am expecting to meet the named surgeon.

Just to complicate matters I will be seeing Haematology at Guy’s Hospital on the preceeding Wednesday. Will my medical file make it back to St.Thomas’ for Friday?

I have printed out the relevant documents from East Surrey Hospital- 2 x ultrasound reports + 2 x follow-up letters + last blood trest results.

I’ve also included my “jigsaw” diagram which shows the various conditions we need to consider and the dates they were diagnosed or last tested – Crohn’s, PVT. BAM, thrombocytopenia, potential PSC + last blood test showed borderline thyroid.

What Shall We Talk About?

Reason for referral – the consultant at East Surrey was concerned that, in my case, cholecystectomy ran the risk of liver damage due to cirrhosis. He also noted my low platelet count and thought that keyhole surgery may not be feasible due to the scarring/adhesions from two previous laparotomies.

Latest test results – Fibroscan (testing for liver cirrhosis) – 2012 was 7.2; currently 7.8. Platelets – 96 (but have been as low as 56). Ultrasound scan showed one large gallstone but made up from many small ones. Weight – 78kg

Risks and Benefits of Surgery

Type of surgery – Keyhole or laparotomy? What factors will decide

Timescales – waiting time for operation; how long for surgery and recovery for either keyhole or laparotomy

Likelihood of liver damage?

WIll bile acid malabsorption become worse if gallbladder removed? (SeHCAT in 2015 showed severe BAM. I keep it under control with just Loperamide but have Colesevelam ready should it be required).

Likelihood of post-operative ileus? After two previous operations I experienced it badly?

Do I need to have reached a particular weight prior to surgery? (Prior to my ileostomy I was given 3 x Fortisip/day to reach a target weight of 85kg)

My Preferred Way Forward

To have surgery when it becomes necessary not as pre-emptive measure. “Emergency rather than elective”. Maybe that’s over dramatic and should read “Just-in-time rather than elective?” What are the risks of this approach? What signs will indicate that an operation is needed? How soon does action need to be taken once the signs appear?

The consultant at East Surrey Hospital said if I get jaundice again I should go to their A&E and then they will decide whether to  transport me to London by ambulance.

Anything Else?

Next upper GI endoscopy/variceal banding due December 2017

Bloating – have been like this since ileostomy/reversal. Any thoughts on likely cause? One or more of the 5 F’s?

…..should be an interesting meeting

Is planning good for you?

Do you think what you do influences the attitude you adopt to your health condition(s)?

For the last 35 years, or so, I’ve been planning things. Think party planning but without the sex, drugs and rock’n’roll. To be precise I’ve been planning a whole range of projects ranging from construction jobs, offshore wind farms, defence contracts and the mega Channel Tunnel. The last few years have been spent planning a major upgrade to the London Undergound system including the introduction of the air-conditioned, walk-through trains on the District, Circle and Metropolitan Lines. (If you use them I hope you enjoy the experience).
The job has been challenging, especially when tackling new areas as you need to quickly learn a myriad of acronyms, technical terms and understand the new processes needed to deliver a successful outcome. The standard planning tool is the bar chart, or Gantt chart to give it its fancy name, but the key is always communication. That’s where my love of diagrams comes from. If you can encapsulate on a single page the message you are trying to get across it is so much easier for others to understand than using reams of words.
In 2010, maybe it was 2011, it dawned on me that my health could be considered a “project” and the techniques I had been using for years could be effectively employed. I was faced with multiple outpatient appointments, procedures and a growing number of health conditions. The follow-up letters or medical reports often contained acronyms or very long, very unfamiliar medical terms and when I obtained copies of all my medical records I reached information overload. It then became a labour of love to condense the “story” into an easy to follow narrative.
The “project” approach (and starting a blog) has enabled me to become very objective about health issues. I see my consultants/NHS as a set of expert resources that will help to achieve a successful outcome. But, of course, there lies a problem. What is a successful outcome? For a conventional project there is a clearly defined point at which it can be declared finished but for a chronic condition, such as Crohn’s, there is at present no end in sight. That makes me uneasy as I’m used to completing a project and then moving on to the next one. (My wife would not agree when it comes to home DIY but that’s just a man thing).
Maybe this isn’t just a chronic illness issue but also age related. When you reach a certain point in your life mortality surfaces as an issue. You start to realise that there’s more behind you than in front. If you’re an actuary then you may have already calculated when your use of the term “midlife crisis” is valid. For the rest of us, without access to the actuarial tables, we can only guess and ask our consultants that question that they can’t answer – “is it Crohn’s that will be the limiting factor or is there an even bigger elephant in the room?”
Returning to the original question – do you think your job influences your attitude? Maybe I’ve got this completely the wrong way round and the question should be – do you think your attitude to your condition influences the job that you do?

Medical Records

This post has been prompted by the topics for #patientchat discussion on Twitter, “Medical Records” (#Tweetchat – Friday 4th August 2017 13:00 EST 18:00 BST).

I have touched on this subject before but it’s always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

These are the topics set for the #patientchat discussion

T1: Do you have access to your Electronic Health Records (EHRs)? If so, does that info help you actively share in your healthcare decision making?

T2: What are benefits to patients being able to view the notes that doctors, nurses and other clinicians write after a visit?

T3a: Do you sometimes find the amount and type of info available in your EHRs overwhelming and/or incomprehensible?

T3b: If so, what are some ways to make it easier to decipher and use in your decision making?

T4: What are your tips for keeping your healthcare records organized? Do you use any resources?

T5: Is it important to request past medical records from your doctors and keep copies for yourself?

T6: What do you think some of the barriers are to implementing EHRs? How can we work together to overcome them?

Ideal World vs. Reality

In an ideal world each of us would have our full medical record available in a universally readable format that could be easily accessed by any medical professional that is treating us.

Now let’s look at the real world. If you are a relatively new patient who hasn’t moved hospital and not had an in-patient stay then you may indeed have a complete record, held electronically, on an IT system. If, however, you are a long term patient who has moved between GPs and hospitals and spent time as an in-patient then the situation is far more complicated. You are likely to have a mixture of hand written notes and observations, type written letters and, more recently, computer generated letters and test reults. There are also x-rays and scans to consider.

The above does not address the issue of universal access. The last attempt in the UK to implement a system was NpFIT (The National Programme for IT in the NHS), a project initiated by the Labour government in 2002 and cancelled some years later having spent in the region of £12bn and having delivered nothing. Government backed IT projects are notorious for being disaster areas.

Patient Rights

Where does that leave the patient?

In the UK you have a right to access your medical records. Since 2000 I have received copies of the follow-up letters from outpatient appointments  that the consultant sends to my GP. This may be sufficient for your needs but I needed to fill in a lot of missing detail for the book I was writing. For the payment of a fee you can obtain copies of all your medical records . Requests forms are available online for each Healthcare Trust and as I had been treated by 3 different Trusts I filled in 3 different forms and sent them off with the relevant payments (between £20 and £50 depending upon whether you just require medical notes or want copies of x-rays and scans as well).

A series of packets duly arrived and I was amazed to find they really  did contain ALL my medical notes from October 1977 to the present. Two Trusts chose to send hard copies whilst the third had scanned the notes to a pdf file of over 700 pages. I also had loadable files for CT, MRI and US scans. The only things missing were certain early x-rays.

Information Overload?

My initial reaction was “information overload” but over the space of a few nights I sorted the documents by type and date order and picked out the “juicy bits”. Those bits that explained some long, unanswered questions about my treatment. Probably the most fascinating were the ward notes from the times I spent in hospital. These are not usually documents that you get to read.
The discs containing CT and MRI scans looked a bigger challenge but I found a great piece of software called OsiriX which opens and views the files. (The Lite version of the software is available as a free download). Hours of fun looking at 3D visualisations of your innards.

What use are they?

What can you do with, potentially, a huge amount of very detailed medical notes? Whilst they might be of academic interest to the patient and provide a fascinating insight into how you arrived at your current state they are not a lot of use to your medical professionals due to the sheer bulk of the information. This is especially true if you are seeing a new consultant who needs a succinct overview of your medical history and current issues or if you end up in A&E (ER) where they need to start treatment as soon as possible.

It gets considerably more complex if you are suffering from multiple conditions. Initially I put together all the major events into a spreadsheet table. Going through the process certainly gave me a good grasp of my overall health and I have ended up a much better informed patient. This helps greatly when you need to take decisions about the course of future treatment. It helps clarify the most important issues.

If you are still find it difficult to work out how your health threads come together then draw a diagram. I’ve tried a number of different format. There are a couple of examples below :

In Practice

In February 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 medications. When we had finished running through the various ailments she complimented me on my knowledge. (Definitely a result of researching and tabulating my health records)

Next I saw an A&E Registrar. Who 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 and an appendectomy incision. He wouldn’t have been aware why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that I had Crohn’s disease, that there were additional veins growing in my esophagus (varices), that my spleen was enarged or that my platelet count was around 60. Valuable time could have been lost trying to investigate the wrong problems.

Do It Yourself

As a result of my A&E visit I wondered – is there was a standard, minimum set of data that should be available? Is there a standard format for the data? I searched the internet and could find nothing. I suppose a good starting point would 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?

I had a go at making one using a USB bracelet. I settled upon two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents are stored as pdf files and linked to various back-up documents such as laboratory or histological reports.
I

USB Bracelet

There is one problem. Security. Does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc? (Particulary relevant since the recent cyber attack). I have a feeling this is a non-runner so I’m favouring storing the files on a secure server and potentially accessing them via a QR code on a dog tag (or even a wrist tattoo)

Future Developments

There are more references appearing where patients are recording their consultant appointments or having consultations via Skype. Would these audio and video files need to be kept as part of your medical record? Do medical professionals expect to have access to any recordings you make?

Watch this space…..