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.

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…..

Book Review – “Managing IBD” by Jenna Farmer

“Managing IBD – A balanced guide to Inflammatory Bowel Disease” by Jenna Farmer. Published by Hammersmith Health Books. 161 pagesBook reviewing is a brand new experience for me; unfortunately IBD isn’t and that was one of the reasons I was keen to review this book.
When it arrived I eagerly opened the packet and immediately turned to the back cover to read the synopsis. I tend to be somewhat cynical about those words on every book cover that are written to entice the potential reader to part with their cash but, having read the book, these ones very neatly sums up the content and style. The subtitle for the book is “A balanced guide…” and I believe Jenna has achieved her aim. By the end of the book I can honestly say I had learnt a lot about a range of subjects that I have tended to ignore or gloss over in the past. It has also reinforced just how differently each of us experiences IBD.

The book starts with the Introduction and Jenna has wisely avoided quoting swathes of statistics about IBD, that’s not what this book is about. The Introduction does contain is the “hook”. Why did it take a move to China for the author to be diagnosed and what was she doing so far from home? You have to read on to satisfy your curiosity. The description of the hospital in China is enlightening, maybe shocking. I’ll say no more. It’s a sad endictment of the continued lack of IBD awareness within some of the UK medical profession that it took the move to a country thousands of miles away to be finally diagnosed with Crohn’s disease.

The main body of the book is broken down into five sections. The first section is entitled “Adjusting to Life with IBD” and starts with diagnosis and some of the symptoms you might experience. It then goes on to briefly describe the usual tests patients undergo and gives tips on how to cope with the most common of these, the colonoscopy. Never a pleasant experience, but a neccessity.
The chapters move on to run through some of the many theories of what causes IBD and left me questionning whether we are any closer to knowing what causes the disease than we were when I was first diagnosed. There is however some hope that the new drugs being developed will at least enable IBD to be controlled in a better way. Jenna briefly runs through the main drugs currently used in treatment and then discusses surgery.

The one paragraph I do take issue with is the description of an ileostomy as involving “the removal of large colon”. The term ileostomy refers to diverting the small intestine through an opening in the abdomen and forming a stoma. It may only be a temporary measure whilst the colon is left intact to recover or heal. The small and large intestines can then rejoined in a “reversal” operation. Jenna points out that losing the final part of your small bowel impairs the body’s ability to absorb B12 and other vitamins but it’s important to add that it can also lead to another condition called bile acid malabsorption (BAM), a subject that many patients, and doctors, are unaware of.

Chapter 3 explains about finding support and lists some of the organisations that can provide it. The text then moves on to a subject that is often swept under the carpet – the affect of IBD on one’s mental health. The very nature of IBD with the uncertainty of its long term implications but also the short term, practical ones of “will I make it to the bathroom without an accident?”, will affect all sufferers to a greater or lesser extent. Jenna explains her own personal experience of anxiety and follows this with descriptions of some of the therapies that are available. These include Cognitive Behaviour Therapy, endorsed by the NHS for treating anxiety and depression. As for some of the other techniques? I will admit that I have long been sceptical that many are simply fancy names to describe natural mechanisms that we innately use. This is a generalisation and I am not commenting specifically on the two other techniques that Jenna mentions – Emotional Freedom Technique and Percussive Suggestion Technique.

Section 2 “Foods and Supplements” is where Jenna’s training as a nutrional therapist comes into it’s own and where I learned the most. Over the next four chapters she explores supplements, beneficial foods, staying hydrated and the role of food in managing IBD. Whilst what you eat isn’t going to cure your IBD (despite some of the more outlandish claims that appear on Facebook) it can make you feel a lot more comfortable and give you better control over the symptoms.It’s an easy to read section which demystified many of the terms I have seen mentioned on social media or in blogs. So that’s what a Paleo diet is! I didn’t know that there are two types of fibre! The only suggestion that didn’t convince me was the idea of using sauerkraut as a probiotic, not because I doubt it’s efficacy but the thought of eating fermented cabbage….

Section 3 “Living Life to the Full with IBD” is all about QOL (Quality of Life) which for I consider is the most important measure of how well your condition is being managed. This section covers work, travel, exercise, socialising and the all to frequent hospital visits. The chapter on travel is full of tips on how to make travel more manageable. It could only have been written by someone who has experienced it themselves. I certainly wouldn’t have thought to ask some of the questions Jenna does when preparing for a trip.
The penultimate section is entitled “Other Possible Approaches” which briefly explores alternative therapies and concludes with a very useful 24 hour self care plan for when you are suffering from that inevitable flare-up. The final section pulls together the references and links from earlier chapters to enable readers to do further research.

Throughout the book the text is interspersed with accounts from other patients about their own experiences and some are bound to strike a chord with the reader. I say some because, as I wrote earlier, we all experience IBD in our unique way. If you’ve recently been diagnosed with IBD, or know someone who has, then this is an excellent, non-sensational book that gives a balanced overview of living and coping with IBD on a daily basis. It’s an optimistic book that suggests practical ways of making life with IBD more bearable.




Should It Stay or Should It Go?

At the end of April I recorded a visit to London to see my gastro consultant (see post “50 Shades of Grey”). We discussed the “blip” last February  when I turned yellow. The keywords being – local A&E, jaundice, gallstones. There was the added complication that my local hospital was taking care of this issue. Split responsibilities and patient records tend to slow the treatment process down.

Back in November 2016, at my annual Upper GI endoscopy, I had asked if it would be a good idea to have another Fibroscan, a specialist ultrasound scan that measures liver stiffness (cirrhosis). The last one had been in November 2012 and it would be nice to know if there had been further deterioration. It was agreed that it would be a good idea but the request form was never issued.

The need to know about worsening cirrhosis had now become more urgent. My gastro filled in the request form as I watched. A few days later the appointment came through – 4th September. That long? Four months just for a very simple 5 minute test?

Friday 7th July 2017 – East Surrey Hospital Outpatients

When the “blip” happened I had gone down to our local A&E and spent the night there being monitored. Afterwards there was a follow-up appointment with an upper GI consultant locally (see post called “Time Bomb No.2, please” – April 2017). A further ultrasound scan was ordered and he said he would be happy to see me again to discuss the results. The scan took place on 12th May, the day NHS IT systems were hit by a virus. Usually I would expect to take a copy of the report away with me but not this time. I let a month go by then asked my GP surgery if they had seen the missing report. No, but a day later they had obtained a copy and rang me to let me know. (They provide an exceptional service)

The report stated “could suggest chronic cholecystitis” (inflammation of the gallbladder). Dr. Google was divided upon this condition. Some sites declared it serious and in need of treatment straight away; others said that if the patient was asymptomatic then it could be left alone. I rang the consultant’s secretary and she organised the follow-up appointment for 7th July.

(I had been under the impression, after the first appointment, that the consultant was going to discuss the case with my “doctor” (gastro consultant at GSTT) and would make a direct referral to Kings College Hospital Liver Unit. Wrong on both counts. The “doctor” he meant was my GP and the referral would be made via the GP after the follow-up scan. Doh! I had assumed that the process was already under way.)

I asked him specifically what concerns he had that would require surgery to be carried out in a specialist liver unit. He replied that they were : liver cirrhosis, low platelets, the adhesions from previous laparatomies and a possible bleed. No arguing with that. He also said that if I had a recurrence of the jaundice or pain in a specific area then I should go to our local A&E and they would take the decision on whether to treat me or transport me to London. We left it that a letter would be sent to my GP asking him to make the necessary arrangements. I thought it might be best to discuss it with my GP rather than just let the process take its course.

In the meantime I wanted to find out if there were any other hospitals I should consider along with KCH so I posted a question on FB in the PSC and BAM support forums. A number of other units were suggested but KCH came out well and it would be easier for me to get to.  Then I was recommended a consultant who works between St.Thomas’ and KCH. This would be the best of both worlds as they would have access to all my medical notes. I now had a name and contact details for the doctor I want to be referred to.

Tuesday 19th July 2017

My GP rang  this afternoon and we agreed that he would put the referral process in motion. He was of the opinion that this could have been done hospital to hospital.

Whilst I’m feeling fit and in no pain then I’m quite happy to leave the gallbladder well alone but I want to be prepared in case it all starts to go wrong.  It should be an interesting conversation with the consultant/surgeon as to his recommended way forward, especially when we start to discuss complicating factors – the minor annoyances of PVT, PSC, Splenomagely, thrombocytopenia and BAM.  I’m sure he would be interested in the results of the Fibroscan.

(That’s quite a list of complicating factors. As I’ve mentioned before it could well be a winning hand in “chronic condition top trumps”)


From Diagnosis to Surgery

In the dim and distant past I was becoming unwell, the sort of unwell that ended up in dashes to the bathroom. My GP quickly announced his verdict – I was suffering from “nerves”. He gave me a course of Nacton because, as we all know, the way to treat “nerves” is with a medication for peptic ulcers. Thank heavens for locums….

Within 18 months I was “enjoying” my first trip in an ambulance, compete with blue lights flashing and sirens wailing. Was I on my way to die? (Clearly not or you wouldn’t be reading this)

To fill in some of the details I’ll point you at the fuller version of the story. Clicking on the image below will open up a pdf file of my book/journal’s draft first chapter, and some early, rather pathetic, selfies…….

It’s World IBD Day, again

It doesn’t seem a year ago when we were all wishing each other “Happy World IBD Day” (however inappropriate that may sound to non-IBDers).

To mark the day I’ve been inspired by last night’s (18th May) excellent #IBDHour chat very ably hosted by Richard Harris (@doobarz) and Shell Lawes (@shelllawes). The topic was the medications that we take or are offered for treating IBD. I’ve really taken to the format of TweetChats, the only downside being the constraint of trying to do justice to complex issues in just 140 characters. (That’s also an upside because you have to think more carefully about what you are typing)

One thing that was clear from last night is how differently we all react to the “common” drugs – salazopyrin, prednisolone, azathioprine, Remicade etc. There was some shock that I had prescribed steroids for twenty years but that wasn’t the whole story. The very first drug I was given was “Nacton”.  “Nacton?” Yes, a drug for peptic ulcers. Things could only get better…

I thought I might tell the story of my diagnosis and first surgery without the 140 character constraint. If you click on the image below it will open the first chapter from my book  – “Crohn’s Disease – Wrestling the Octopus”, as a pdf, in a new window. (It is still draft at this stage and the eagle eyed will notice some punctuation that needs changing)


Fifty Shades of Grey

Let’s get my latest appointment out the way…….

Monday – 24th April 2017 – Gastro Appointment, Guy’s Hospital

I hadn’t planned this appointment, neither had my gastro consultant but the booking system had other ideas. It must be set to auto repeat every 6 months and doesn’t take into account any ad-hoc appointments in between. I had intended to cancel but I’m pleased I didn’t as there were things that needed talking through. I produced the obligatory list of questions (responses in red) :

1.    Biopsy results (from 11th March colonoscopy) – the report from the path lab said that the biopsies were consistent with “quiescent” Crohn’s disease. This result was about as good as it could get. Once you have the disease there will always be some signs of it, even when in remission.

2.    Explanation of rising calpro levels given result of recent colonoscopy?       – to be honest, he simply did not know what was causing the raised calpro levels. He had been concerned that something had been missed during a previous colonoscopy hence the repeat, in March, carried out by his trusted colleague (and watched by an audience of trainee, international gastroenterologists).

3.    If calprotectin tests not giving meaningful pointer to Crohn’s activity what monitoring regime should we adopt? – I had anticipated what the answer would be and I was right. If you start to feel the Crohn’s is becoming active then we’ll take it from there.

4.    The upper GI surgeon (Professor), who I saw locally (see previous post) regarding gallbladder removal, was talking about referral to a specialist liver facility “in case of needing a transplant” arising from complications during the  cholecystectomy (sounded very drastic) – my gastro agreed that I should be referred to a specialist unit in view of my concurrent conditions. The most likely unit would be the one at Kings College Hospital. The issue of needing a transplant would be a last resort if something went very wrong during the operation. He typed a letter to the Professor suggesting that the referral should go ahead.

5.    Awaiting ultrasound appointment (locally) to look at liver, gallbladder, bile duct and portal vein – noted. No date as yet.

6.    Pros and cons of having gallbladder removed? – to be discussed with specialist liver facility. Even if I decide not to have surgery I would at least be on their radar so that should I end up having another jaundice incident, that needed urgent resolution, they would already be aware of my case.

7.    Fibro-scan to see if liver cirrhosis progressing – he filled in the online booking form to request the scan. (Date now through – 4th September)

8.    Current weight 78.2kg. The target weight set prior to my ileostomy (October 2010) was to get UP to 90kg, which I achieved with the aid of 3 x Fortisip (300 calories each) per day. My subsequent decline by 12kg has been quite a loss – whilst I felt fit at this reduced weight it was a lot lighter than the previous target weight. I thought I had better point it out. We would continue to monitor.

9.    Next steps – ultrasound scan; fibro-scan; no further colonoscopies at present; follow-up appointment in 6 months time (the booking system should already be doing that); yearly endoscopy at Christmas to check varices + appointment with specialist liver unit.

50 Shades of Grey

For 30 years I really didn’t want to delve too deeply into my health. It was clear, black and white, I had Crohn’s Disease (after the usual “is it IBS debate” within the medical profession). It was centred mainly around the join between my small and large intestines (a common location) and had caused a stricture. Despite this I spent many years in remission.

In the last few years my medical life has become more complex with new issues arising. Most of them  are very definitely not black or white.

It started with the dramatic fall in my platelet count that has never recovered (thrombocytopenia). Was it really as a side effect of the Azathioprine I had been taking for 8 years? You would expect it to have bounced back when I stopped the drug. Is it related to my spleen becoming enlarged? Could this be the cause of the platelets issue instead? Two bone marrow biopsies later and there is still no definitive answer.

Next there was the incident where new blood vessels had grown in my esophagus and then burst. A subsequent x-ray showed a blood clot had formed in my portal vein (thrombosis) which had increased the pressure in the veins higher up. Most likely cause of the clot? The current theory is it’s the result of peritonitis following a perforated bowel operation in….1979! Really? That long ago? Apparently there is always a risk of PVT during any surgery. I’ve also seen research that once you have Crohn’s patients you are more susceptible to clots.

As a result of the above incident it was suggested that I might have Primary Sclerosing Cholangitis (PSC) I had a fibro-scan on my liver which showed signs of cirrhosis. What caused that? It certinly wasn’t alcohol related as I drink very little. Is it linked to that blood clot? I then had a liver biopsy and, thankfully, it showed no PSC.

What caused my recent jaundice incident last January? I felt no pain whatsoever only violent shivering and turning yellow. It must have been gallstone related but this is usually accompanied by the most excruciating pain. Again there is a potentially a link between Crohn’s and the increased likelihood of developing gallstones.

…and so to my latest consultation. Yet another puzzle – how to explain a rising calprotectin level with a colonoscopy, and biopsies, that showed I’m in remission.

…and not forgetting the reason I had that second colonoscopy – to see if there was any evidence of the strictures which showed up on the MRI scan, which there wasn’t. Another conundrum and one that had also happened back in 2012.

…and, of course, there’s the biggest grey area in the room – what causes Crohn’s Disease?

I’m not going to lose any sleep over the above. What’s done is done. It’s more out of curiosity that I would like definitive answers. In an ideal world I’d get a gastroenterologist, a hepatologist and a haematologist in a room together and let them reach a concensus on likely causes. That isn’t going to happen anytime soon…….

…but maybe the combination of conditions would at least give me a winning hand playing “Illness Top Trumps”


Time Bomb No.2, please

Monday – 13th March 2017 – off to see my GP to get a prescription for Colesevelam, a bile acid sequestrant. He greeted me with “bloody hell, you look well!”  I didn’t understand the reason for his comment until later. We agreed on the new drug and he also reviewed my existing medications. So far so good.

He had been reading my medical record, the last entry of which was a trip to A&E with jaundice.  He had assumed that I was back to see him with a recurrence of the  problem, hence his comment. He asked me what the plan was following discharge back at the beginning of February. As far as I was concerned I had undergone a follow-up ultrasound scan and it was now matter closed. Clearly he thought there should have been some follow-up. He was rather miffed that I had heard nothing and said that he would chase it up.

We then had a fairly lengthy discussion on gallstones and surgery to have my gallbladder removed. That was a bit of a shock. I had gone in to get a prescription and come away with a referral to see a surgeon. Not what I was expecting. I managed to book the referral for 3 weeks time

Wednesday 5th April 2017 – East Surrey Hospital

This was going to be another one of those “interesting” appointments. I hadn’t been to see a surgeon since 2011. It would be with someone I hadn’t met before and I knew from experience that much of a first appointment would be taken up with the new doctor rapidly trying to assimilate my medical history. I thought I might help this process by producing the diagram below.

Unfortunately the doctor had already read my notes before he called us in so my diagram did not have its intended benefit.

My wife accompanied me as surgery and recuperation obviously affects all the family, not just the patient.  We were greeted by the new consultant who turned out to be a professor. I had produced a list of questions based on the BARN principle – Benefits, Alternatives, Risk or do Nothing (or what’s Next?). Our discussion  covered many aspects of gallbladders and the biliary system. I’ll use my list to organise them into subjects.


What would be the advantage of having galbladder removed? No more gallstones and therefore no more risks associated with them.

Would the operation be laparoscopic cholecystectomy (keyhole) or open surgery? What are the deciding factors? Due to my previous surgery and the likelihood of extensive adhesions it might not be possible to use keyhole techniques. The only way of seeing what adhesions are present would be by inserting a camera into the abdominal cavity.

What are hospital and recovery period for open surgery? Usually two days in hospital and two weeks recuperation.

BAM currently well controlled by 2 capsules of Loperamide/day, would losing my gallbladder mean starting on Colosevelam? No. It should not affect the current situation


Is there an alternative to surgery ie. ERCP? ERCP only suitable for removing stones from ducts once they have left the gallbladder.

We could do nothing – see below


Any risks specific to gallbladder removal? There would be the usual risks of surgery but given my other conditions :

Portal Vein Thrombosis
Crohn’s DIsease
Bile Acid Malabsorption

They could cause additional complications. He was specifically concerned about thrombocytopenia (low platelets) and the chance of losing a large amount of blood during the procedure. He was also concerned about potential liver damage and noted that I already had the start of cirrhosis.

(As an aside – BAM could actually be helping my condition as there is less bile for recycling)

Given my past experience could surgery lead to post operative ileus? With keyhole surgery it is unlikely but there is a possibility with open surgery.


What happens if we do nothing? It was finely balanced as to which course of action would be best. As I was asympytomatic and feeling well then maybe this was the option to choose. Ultimately it would be a joint decision between the consultant and myself.

Can “do nothing” cause long term damage to other organs? If another gallstone escaped from the gallbladder then the amount of potential damage  would depend where it came to rest. He drew a simple diagram to illustrate his point. If the stone lodged just below the gallbladder then it could cause it to expand. If it lodged further down the system at the sphincter where the stomach joins the duodenum then it could cause cholangitis (inflammation of the biliary ducts) and/or pancreatitis (inflammation of the pancreas). Both are very serious conditions.

What would the warning signs be? Pain in the right side, maybe stretching up to the shoulder. Skin and whites of eyes turning yellow. Usually the pain would be severe which is why it was strange that I felt nothing during my recent episode of jaundice.

NEXT steps

He put in a request for a further ultrasound scan (locally) but would be recommending that I was referred to a hospital with a dedicated, specialist liver unit due to his concerns about the potential risks of an operation ie.  needing a liver transplant if things went badly wrong!!!! I asked him to discuss this with my gastro consultant at St. Thomas’ Hospital.

In future I must try and avoid fatty or spicy foods as these could cause the gallbladder to contract which might, in turn, expel a stone into the ducts.

When I returned home I emailed my consultant at St. Thomas’ to give him an update on my situation and explain about being referred to a dedicated liver unit. I also asked if the results of the recent biopsies (taken during a colonoscopy) were available and whether my liver stiffness should be the subject of ongoing monitoring.

Time Bomb No.2

Maybe it’s being slightly over dramatic but it does seem that I am now carrying another time bomb around with me. No.1 – the esophageal varices – have now been joined by No.2 – gallstones. If the varices burst, again, or another gallstone gets stuck then they will needing emergency hospital admission…. but the sun has been shining all day so let’s not get too hung up about it.

A personal view