Getting Involved in Research

How I Became Involved in Research

June 2018 will see the 40th anniversary of my diagnosis with Crohn’s Disease (although the symptoms had been apparent since the previous Autumn). Apart from early surgery, for a perforated bowel, I spent the next 30 years clear of any major flare-ups and was not greatly affected by the disease.

That all changed in 2009 when the drugs stopped working and surgery beckoned. A year later I underwent an ileostomy at St.Thomas’ Hospital (subsequently reversed). The whole experience was life changing. At that point I started to become aware of social media and the active IBD communities out there on the web. I learnt much more about IBD and read about other patient’s experiences.

After surgery in 2010 I went into remission although a number of other conditions appeared. I was keen to understand what caused them and if anything in my medical history would point to their origins. I started to read research papers on these conditions and re-visit old medical records.

I had already contributed to research by donating blood and tissue samples from my ileostomy and had taken part in a genetics study but, having been in remission since 2011, the other studies I came across needed patients with active disease. That didn’t stop me from helping but it was now from the other side of the fence. I reviewed questionnaires and information sheets for research studies to make sure they were “patient friendly”.

In 2017 I took early retirement which gave me the opportunity to devote more time to helping the IBD cause. Towards the end of last year I was asked by a fellow Crohn’s patient whether I would be interested in helping Bowel & Cancer Research. After an initial meeting I realised this was an environment I could contribute to and I have subsequently become the Public and Patient Involvement Lead (PPI) for the Motilent study, using enhanced processing of MRI scans for the management of, initially, Crohn’s Disease. Crohn’s was chosen as small bowel MRIs are commonly used to monitor the disease and it has a significant patient base.

(The National Institute for Health Research (NIHR) defines public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.”)

I happened to mention that I had carried out a very simplistic calculation of the time I had lost during the last 10 years due to Crohns’ and related issues (including attending outpatient appointments, undergoing procedures or sitting in a hospital bed as an in-patient). The diagram below illustrates that the period mid-2012/13 was particularly intense. The time lost equated to just under 8%. The project team liked the idea of preparing a properly researched study into the cost burdens experienced by patients and so the “Costing Crohn’s” study was born. Luckily several team members are experienced in organising such studies and the requirements for producing a document that can undergo peer review. It was time to learn from the experts!

The first step was to recruit a small working group of patients to review the approach we are proposing to take and suggest the areas we need to consider. We held our first meeting at Bowel & Cancer Research HQ in February.

As a precursor to the meeting I produced the diagram below based on my own, personal experience. It gave us a starting point for our discussion. By the end of the session the diagram had grown many more branches! A big thanks to our participants.

Our next step is to put together the first questionnaire for Crohn’s patients to complete. We’ve taken the decision to produce a series of short questionnaires rather than one long one. The first one will be on the subject of the procedures respondees have undergone in the last 12 months.

The results of our study will be enhanced by the number of responses we can get back. Please look out, later ths year, for links to the “Costing Crohn’s” study on Facebook, Twitter and other social media platforms. We will be needing you help.

Twitter account – @costingcrohns #costingcrohns

 

Meeting People

THAT WAS THEN….

Up until 2010 I had only ever met 2 other people with Crohn’s Disease – a work colleague in 1992 and a neighbour a couple of years later. I had deliberately avoided joining any patient groups. Why would I want to go out of my way to mix with a load of “sick people”?

After initial surgery I had spent long periods in remission and never had a flare-up bad enough to be hospitalised. My only contact with Planet IBD was when I saw a consultant, sometimes six monthly, yearly or longer. My only knowledge of what it was like to live with Crohn’s was from personal experience.

Then in 2010, with surgery beckoning, I started using SoMe and suddenly I found the online IBD Community and “met” lots of Crohn’s patients, albeit in cyberspace. I then went on to meet a couple of them for a coffee.

….BUT THIS IS NOW

I recently had the privilege of taking part in a patient workshop. So what happens when a small group of Crohn’s patients get together, not virtually, but sitting round a table to discuss the cost of the disease to the patient? (and not forgetting the valuable contribution of one patient on speaker phone)? A number of things :

The barriers and taboos of “normal” conversation go out of the window. No subject is off limits. Any embarrassment disappears.

It quickly becomes obvious that whilst we share many of the same experiences, we all have a unique take on the disease and the way we cope with it.

The atmosphere is one of empathy and not judgement.

My overriding thought, having listened to everyone’s story, was what an amazing thing the human body is. The pain and heartache it can inflict upon us but also its ability to survive against all the odds. Even more remarkable is the human spirit and how it copes with a failing body and the mental anguish that a chronic disease can bring with it.

I also learnt some very specific things such as what a Hickman line is or why some patients have a Portacath or what it is like trying to claim support payments.

At the end of the workshop one of the non-Crohn’s participants said that until you do this sort of exercise you cannot understand how all encompassing living with Crohn’s is or, for that matter, any chronic disease.

I’m looking forward to the follow-up workshop later in the year.

…as an added bonus we were given a guided tour around the Bowel & Cancer Research laboratories by one of their very enthusiastic pharmacologists who explained some of the research projects underway

Bowel & Cancer Research Laboratory
Tissue samples undergoing tests

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”.

I had previously been told that Crohn’s patients undergoing a flare are more susceptible to blood clots but not why. She explained that 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 good way of showing a new doctor or surgeon the complexity of my case on just a single page. This first illustration is an early version.

Early version of diagram

I attached it to a Tweet during a #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. Taking the initial, simple diagram I added many more “nodes” that when clicked would open up the relevant documents or test results.

Latest edition used for interactive version

The link below will take you to an html version. It was not too difficult to set up but needed a knowledge of “mapping”. The most time consumng part was removing personal details from the documents.

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

….and Finally

In September 2018 I had reason to visit my GP surgery. I knew it would be a new doctor I was seeing so went clutching the diagram in my hand. The GP found it useful. I was ooking at it upside down from where I sat and it dawned on me that i had crammed TMI on that one sheet. There was a lot of detail that wou;d be of interest to a colorectal surgeon or gastroenterologist but was superfluous to a GP. And so the latest version was born and colour coded to highlight – procedures, results, medications and referrals. Can’t wait to try this “new, improved” version for the first time and see what reaction I get.

Good Doctor, Exceptional Doctor

A while 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 #Tweetchat.

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

It’s in the blood

As a precursor to seeing a surgeon this Friday I booked an appointment with Haematology. It was only after making the booking that I read their last follow-up letter which said they had discharged me from their care. So it was with a certain amount of doubt that I approached today’s trip to London. Would I be wasting their time?

The waiting room at Guy’s was very quiet. Ominously quiet. Half a dozen patients at most. I had never seen it that deserted. The phlebotomist took blood samples and after a short wait, once the results were available, I was called in by one of the haematologists. I had not met her before and so as the consultation proceeded I needed to fill in some of the details.
I explained that since being discharged a new medical issue had arisen – a bout of jaundice. As a result I would be going to St.Thomas’ to see an upper GI surgeon to discuss having my gallbladder removed. She noted that gallbladder removal, by keyhole surgery, is a fairly simple operation on the surgery scale so I explained there were other complications and that my local hospital felt unable to cope with them, hence my referral to GSTT.
We went through the complications and their history :
Keyhole surgery unlikely to be an option due to previous adhesions/scar tissue
Portal Vein Thrombosis/portal hypertension
Low Platelets – would need to be over 80 or might need infusion
Liver cirrhosis
Co-ordinating consultants across two hospitals and four departments
As we covered each topic she used their eNote system to record her recommendations and these would be available for the surgeon to read. The follow-up letter itself would take a while to be issued.
The conclusion was that they would need to write up a plan for the surgery and would also refer me to their thrombosis unit to review my case. I came away feeling justified in requesting the appointment. I wanted to be better informed for Friday’s appointment and now felt armed with additional questions to ask. It can sometimes be a danger sounding quite well informed and having picked up some of the medical terms (the consultants version of polari) as you may get the answers back at a level higher than your actual knowledge! Never be afraid to ask if you don’t understand something.
Yes, I could have left all the above to chance but if I can help the process along, make sure the various parties are communicating and minimise risks then I’ll do whatever it takes. Roll on Friday…
I spent the rest of my time wandering along the banks of the River Thames, taking in the sights and ended up at Tate Modern.
Tower Bridge, HMS Belfast and a new berthing partner
Tate Modern – Installation by Magdelena Abakanowicz

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 test 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

My automedicography – a personal view