Category Archives: portal vein thrombosis

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.

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.


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

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”


#HAWMC – Day 28 – 5 Challenges & 5 Small Victories


Five Challenges

Challenge #1 – Crohn’s – this time last year a regular calprotectin test showed that my Crohn’s disease looks like it has reactivated after 5 years of drug-free remission. This summer I had a colonoscopy and an MRI scan which have given slightly contradictory results. I have a gastroenterologist’s appointment on 12th December at which we will discuss the evidence and the way forward.

I am reluctant to restart drugs for the Crohn’s, unless absolutely necessary, but it may become inevitable. The biggest challenge I face, healthwise, is to make the right, informed decision on what is best for my future.

Challenge #2 – BAM (Bile Acid Malabsorption) – an ongoing problem which resulted from losing my terminal ileum (ileostomy surgery) 6 years ago. So far it has been kept under control bytaking 2 Loperamide (Imodium) capsules each day but if that stops working I have the option of going to see my GP and asking him to prescribe a binder (Questran).  Yet more drugs. I came close to it earlier this year.

Challenge #3 – PVT (Portal Vein Thrombosis) – the ticking timebomb. Yearly upper GI endoscopies look for the regrowth of  (varicose) veins in my esophagus. It has worked out that every second year the veins require ligation (having rubber bands around them). The issue is that should they regrow quicker and then burst I have a finite time to get to hospital and a blood transfusion hence the ticking timebomb.

Challenge #4 – Reducing my use of SoMe – it’s very easy to become addicted to the likes of Twitter and Instagram. I intend to limit my time online which should help my mental rather than physical wellbeing.

Challenge #5 – Gain weight – over the last 12 months or so I’ve lost around 10kg (maybe as a result of #1). I would like to put on 5kg back on if possible.

Reading the above you may think I take a very gloomy attitude to life. I don’t but I do like to be realistic and to have a clear understanding of the possible issues that will arise and what is going on inside my body.

Five Small Victories

Victory #1 – Achieving a good, long walk of 10km or more, especially exploring London. It help clear the  mind.

Victory #2 – Finishing a blog post. The process of writing a post is another “good for the mind” exercise. I like to think about what I write rather than just put down the first thing that comes into my head. By being analytical it helps to come to terms with health issues and get them into perspective.

Victory #3 – Medication. Remembering to take the right tablets at the right time and to re-order in time not to run out.

Victory #4 – Encouragement. Being able to give encouragement to other IBD patients when they are going through an uncertain or bad patch.

Victory #5 – Waking up and knowing it is going to be a good day as far as Crohn’s/BAM is concerned. Can usually tell within the first 10 seconds the state of my digestive system!

Living with a timebomb

I’m not trying to scare anyone with this story. It is very unlikely you will experience the same but it is worth being aware of yet another part of the rich tapestry that Crohn’s Disease can weave for us.

This is what happened…..

Monday 28th May 2012 – Outpatient Appointment at Guy’s.

The original intention was to go into work as usual then catch the Tube down to London Bridge in time for my 10 o’clock appointment. I wasn’t feeling so good so decided to catch a later train and go direct to the hospital. I’m used to an early start with virtually no traffic so rather underestimated how long it would take to get to Redhill station from home. By the time I got to the station I could hear the train pulling into the platform. I didn’t realise that it would wait there 5 minutes before leaving so I tried to run and realised just how bad I felt. My chest started heaving and my heart pumping. I really thought I was having a heart attack. Once I was on the train I managed to take some deep breaths and gradually return to some type of normality.

I made my way to the Outpatients Dept. in time for my appointment but then had a long wait before seeing my consultant. When I was finally called in I was relieved to find that I was seeing the top man, not one of the registrars. He did apologise for the long wait.

We went through my list of queries and eventually discussed  the issue I was having with passing a jet black liquid from my back end. He asked me to get a sample for analysis which I thought would be easy but no luck. He also asked me to make an appointment to repeat the colonoscopy to verify the results of the MRI scan.

Eventually I was on my way home and by now the temperature was high. I bought a bottle of cold drink and then boarded the train back to Redhill. By the time I got home I was feeling pretty exhausted and went to have a lie down to recover. Around six o’clock I started to feel sick so disappeared into the toilet and then it happened… (don’t read any further if you are squeamish)

I brought up a large amount of what looked like redcurrant jelly but was clearly freshly congealed blood. I must have gone into shock for a few minutes, thinking “What do I do now?” (Not like me at all. I usually come quickly to terms with what is happening, decide the best actions to take and get on with it but this was like nothing I had experienced before and for a while I couldn’t cope).

I came to the conclusion that this was definitely a 999 moment. I heard my wife coming back from feeding our ponies so called out to her to ring the number. She made the call and then responded to the long series of questions that you now get asked by the operator. The decision to send an ambulance was made and my wife then hurried herself to get together some things into a bag before the ambulance pulled up our sideway. She didn’t quite finish as the ambulance arrived incredibly quickly. When she opened the door she recognised the paramedics as the ones who had taken me into hospital the last time we had reason to call 999 (see “Post Op – Back Home” page – 12th November). They came in to see what state I was in, took one look at the blood surrounding me and, to put me at ease, told me that it was only a small amount!

I was loaded into the ambulance and then went through various tests before we set off. They were obviously concerned at my state and said that my blood pressure was very low. They put me on a drip and the driver said “I think we’ll go for the siren”…….

A few minutes later we arrived at East Surrey Hospital and I was taken straight into the Accident and Emergency assessment area and was immediately seen by a doctor to make sure I was stable. Over the next hour or so I was seen by a couple more doctors whilst they decided the best ward for me to be sent to. Their decision was to admit me to the Medical Assessment Unit where I underwent further assessment. By this time my sister had turned up to take my wife home so we said our goodbyes and I waited to see where I would end up.

My wife returned home and had to clear up the blood from the floor. I’m so lucky to have someone so tough to support me when things are going wrong.

The decision was taken to send me to the ward which specialises in gastroenterology and I was duly taken to this new ward. I then saw the doctor on duty who made sure I was comfortable and worked out what drips I needed to be on.

Tuesday 29th May 2012 – the rest of the night was spent undergoing regular checks on my blood pressure and temperature. I didn’t get much sleep but was just happy to be in the best place, given the condition I was in.

During the day I saw various doctors who were trying to decide which tests I should undergo. The immediate priority was to have an endoscopy (camera down throat) to see where the blood had come from. They tried to get me onto that day’s list and so I wasn’t allowed to eat anything. Unfortunately an emergency case took priority and at six o’clock I was told that I could eat some supper. Apparently the doctor was very surprised at how calmly I took the fact that I wouldn’t be having the test done that day and said she wouldn’t have been so laid back.

They decided that I needed to have a blood transfusion as my blood count had fallen to 6.6. The normal figure for a man is around 14. I therefore had two drips going into the cannula in my left arm.

Wednesday 30th May 2012 to Monday 4th June  – The blood transfusion had brought my blood count up to 8.6, still very low. Over the next few days I had the upper GI endoscopy. I think the doctors were expecting it to show that I had an ulcer, which had burst, or that the Crohn’s inflammation had spread into my stomach. What they actually found were esophageal varices, prominent veins in the lower third of the esophagus and usually related to alcoholism! I looked them up on the internet and found that there is a possible link between them and the Azathioprine drug that I had been on for seven years.

The next step was therefore to have an ultrasound scan to look at my liver as sometimes damage to one of the large veins could route the blood supply into the esophagus causing the varices. I asked what the outcome of this test was and it sounded like nothing particularly untoward showed up apart from a gall stone and a slightly enlarged spleen. I would ask again later, just to make sure I got that right.

The whole ward then went into a sort of 4 day limbo as it was the extended holiday weekend to mark the Queen’s Diamond Jubilee. The number of doctors was greatly reduced and were only seeing patients by exception. I resigned myself to not progressing any further with an explanation of my problem until the following Tuesday.

The phlebotomists did their usual rounds every day and I later found out that my blood count had dropped to 8.0 from 8.6. Not good and would prolong my stay in hospital. The ward sister said that the doctors would be doing a proper ward round on the following Tuesday so I had plenty of time to get a list of questions together. I resigned myself to not progressing any further with an explanation of my problem until then.

Tuesday 5th June 2012 – I knew at some point I would encounter the consultant that I had emailed around a year ago saying that, basically, I was now being treated by St.Thomas’ so not to bother to make any further appointments for me. I had a very good reason for doing this and it is recorded in my book (when it finally gets published).

I’m not going to go into all the details of this encounter but suffice to say that initially he would not look me in the eye and my decision, a year ago, was clearly still bugging him. I reiterated my original reason for leaving his care and this may not have helped the situation. (My decision to move to St.Thomas’ was not taken lightly as it is far easier for me to get to East Surrey Hospital from home, approx. 10 minutes, than it is to get to St.Thomas’). At one point it was suggested that maybe it would be best for me to be put in an ambulance and transported up to London.

I was now in the position that I was under the care of East Surrey for my emergency admission but the long term treatment of Crohn’s was still with St.Thomas’. At the end of a long and detailed discussion on what my current situation was caused by, whilst the junior doctors listened on, we ended up shaking hands and agreeing that we should do what is best for my long term health. Enough said on this matter, let’s move onto possible diagnosis, tests required and best place to have them carried out. So clearly I was not in a position to think about discharge yet.

The recurring terms he used were primary sclerosing cholangitis (PSC) and portal hypertension. He thinks that these are symptoms of a malfunctioning immune system and are also linked to my thrombocytopaenia (low platelet count) and enlarged spleen. I had thought that this last condition had been brought on by the use of Azathioprine but he was sceptical at this.

After the ward round was complete I called one of the junior doctors over and asked how to spell “that primary thing the consultant mentioned” so I could look it up. She replied that it might not be a good idea at present. I decided to park the research for the day but happened to mention it to my sister who immediately looked it up and rang me back. It was all a little scary. Ultimately, if PSC was diagnosed, the long term prognosis – liver transplant! The only way of getting a definite diagnosis would be to carry out a liver biopsy.

With regards to where the tests should be done and the subsequent treatment – I’m not sure what we concluded. I think that we agreed that due to the complex nature of my Crohn’s I would be better remaining under St.Thomas’ as they have more extensive facilities than East Surrey. I wouldrevisit this subject tomorrow on the ward round.

I try to keep a cool head at all times and remain rational so I thought I’d taken the above information in my stride but a little voice at the back of my head kept saying “you’re only keeping calm because you don’t understand the full implications of what you’ve just been told”. When I caught sight of the IBD Nurse I asked her if she could answer some questions, including what were all the long words the consultant were using. She could tell by some of my questions that no one has ever sat down and gone through some of the basic concepts of Crohn’s and its implications.

I got to thinking about this later and she had hit the nail on the head, one of her many skills! (which also includes an encyclopaedic, some might say Wikipedic, knowledge of medical terms and conditions).

No one has ever talked through the bigger Crohn’s picture. For years I thought it was simply an inflammation that caused diarrhea and some pain for which you took steroids. Some years later I ended up with a stricture so I was then aware of another possible complication. The results of the CT scan that I had done three years, or so ago, then introduced me to the concept of fistulas and having to have a stoma. It would be good to be able to spend some time talking this through with a specialist and understanding other possible symptoms and potential effects on other parts of the body. Ultimately I would like to get a clear understanding of the likely effects on my potential life expectancy or quality. I could then use the information to decide when to retire. Maybe I should talk to an actuary.

Back to the ward – it was decided that I should be given another 2 units of blood. Since I hadn’t had any for a week they needed to do another “crossmatch” as they only last 7 days. (All part of ensuring you get the right blood type).

Wednesday 6th June 2012 – that must have been the quietest night so far on the ward. I slept until about 3:00am but then couldn’t get back to sleep until around 7:00am.

The phlebotomist turned up to take more blood samples and she was followed by the registrar and junior doctors on their round. I had quickly made a list of things to ask them – the top question was “plan for escape”.

I was somewhat taken aback when the Registrar said that as long as today’s blood test showed an Hb of over 10 then I could go home. Today! I really wasn’t expecting that. I had told everyone I was in until at least the weekend or possibly would be transferred to St.Thomas’. I’ve now had to wait until around 1 o’clock for my score.

I discussed various things with the Registrar, including going over again what the endoscopy and ultrasound tests had shown. For my long term care they are suggesting that I remain under St.Thomas’ and would be liaising with my specialist there to make sure the necessary test results were passed over. One of the junior doctors was tasked with making this contact.

Thursday 7th June 2012 – back home. My first good night’s sleep for 10 days. Time to take stock. The discharge letter made interesting reading but took a fair amount of translation. The bulk of it listed what they didn’t find so I was rather confused as to what I have actually got wrong with me. The only definite observations were an enlarged spleen and a gallstone.

I read through the leaflets that came with the new drugs. They’d given me – Propanolol – a beta blocker used to prevent stomach bleeding in patients with high blood pressure in their liver or swollen blood vessels in their gullet; and Omeprazole – a proton pump inhibitor to reduce the acid in one’s stomach. Reading through the possible side effects of these two drugs I could end up with insomnia and nightmares. Fingers crossed.

…and since then? – I was put under the care of a liver specialist and underwent a liver biopsy to check for cirrhosis. The result show mild stiffening, something to keep in mind. I now have yearly visits to the endoscopy dept to check out the varices. If they have regrown then the first visit is followed by another two or three when they “obliterate” the veins with rubber bands. Next visit January 2017.

I inevitably turned to the internet. The first page I found, when I searched for PVT and Crohn’s, started with the words “if the patient survives….” Another one said “inevitably fatal”. Not a good start and I was only partly comforted by realising that the articles were written many years ago and by hoping that treatment must have moved on leaps and bounds. If I was to suffer another major bleed from the varices it’s a question of how quick I can get to a hospital and have a transfusion.

It’s like living with a timebomb.

DIARY – Crohn’s, blood clots and low platelets

September 2013

Medically things are going OK-ish. I don’t want to tempt fate by putting it any more strongly than that.  I still have a sporadic, niggly pain around the site of my anastomosis (the bit where they joined my gut back together again in June 2011). This has been ongoing for quite a while and gets worse when I’ve been doing a lot of physical work, worn a belt too tightly or have been on my feet for a long time. My consultant thinks it’s purely mechanical and nothing to worry about.

Between now and Christmas I have four outpatient appointments and will have a chance to practice what I preach using my 8 point approach to “Managing Consultants and Appointments”.

(1) Making a List
(2) Manage Your Appointments
(3) Continuity
(4) Medical History (including copies of any recent emails)
(5) Contacting your consultant between appointments
(6) Follow-up letters
(7) Manage Your Appointments 2
(8) Keep a sense of humour

(There’s a separate post which goes into the detail if you are interested. It should be obvious which one it is – the clue is in its title).

Wednesday 25th September 2013 – Haematology Appointment – Guy’s

 The Background

This was to have been the sign-off appointment where I got handed back to gastroenterology. The “elephant in the room” however is thrombocytopenia – the relative decrease of platelets in the blood. A normal value is anywhere between 150 and 400, I’ve been well below 100 (hovering around the 60 mark) for quite a while now but not exhibited any obvious adverse effects such as bleeding profusely if I cut myself. We had decided to park the issue but when I re-read my notes from the last gastro appointment, and the subsequent follow-up letter (6) , they said that my GI would not put me on a maintenance dose of Azathioprine because it may have caused the thrombocytopenia.

That meant one less route available to me should (when) I need to start drug therapy again to control the Crohn’s. In my last post I mentioned that I would email my GI consultant (5) to ask if he was happy that this issue would remain unresolved. I sent the following and copied in to the haematologist :

“I have my next haematology appointment on Wednesday week. At the last one it was suggested that I could then be discharged back to your care, as we have done with hepatology. The fewer clinics I have to attend the better but I have one question for you regarding my thrombocytopenia from a Crohn’s standpoint.

Because I am asymptomatic and there are many possible causes of the low platelets we have “parked” further investigation. When I saw you at the end of June, we discussed Crohn’s remission and the use of Azathioprine as a maintenance drug but you said you would not want to prescribe it because of the low platelets. Will the non-resolution of the platelets preclude the use of any other potential medications that might be needed if my Crohn’s starts to deteriorate? Is Azathioprine ruled out by low platelets regardless of the cause?”

Early the next morning I received a response from the haematologist :

“Having read this email – I think we do need to go ahead and finally do the bone marrow test to see if we can be  more definitive about the cause for your low platelet count as this is having an impact on your treatment options. We can discuss it when I see you on Wednesday.”

The Appointment

For haematology appointments it’s worth turning up half an hour early as they always take a blood sample and have the results available during your consultation. I booked in and then took a seat. Within 5 minutes I was called by the phlebotomist and had a blood sample taken. It was then back to the seating area, ready for a long wait. After another 10 minutes I heard my name being called. A doctor I hadn’t seen before introduced herself and apologised for keeping me waiting even though I was being seen 15 minutes early. My usual consultant was on holiday so no point in asking “for continuity” (3) and anyway I had already decided that I would be happy to be seen by whichever doctor I was allocated.

As we entered the consulting room I showed her my list (1)(6) and explained I had a few questions to ask. She had started reading my notes but they didn’t include a copy of the recent email correspondence so she was unaware that I was to have a bone marrow biopsy. Luckily I had a copy of the emails on my phone so she was able to read them for herself.

We went through the causes of low platelet counts – increased destruction ie. the body is producing sufficient platelets but something is destroying a number of them, possibly drug induced; or decreased production ie. the body isn’t producing the right number in the first place and could be down to bone marrow failure. The biopsy would help to focus the investigation. (I suppose it could be a combination of both but we’ll cross that bridge….).

We also discussed some other factors which I’m still struggling to understand. I have an enlarged spleen (splenomegaly) – what caused that? Enlarged spleens can hold increased numbers of platelets and therefore lower the number in circulation and the number that get counted. Then there’s the blood clot in my portal vein (PVT – Portal Vein Thrombosis). Did this cause the spleen to enlarge? The doctor remarked that blood clots in this location were common in Crohn’s patients and it was plausible that the clot could have been there since my emergency operation in 1979 as the liver specialist suggested. I asked why it hadn’t shown up on the various x-rays and scans that I had had over the years. She replied that unless the radiologist was specifically looking in that area it would be easy to overlook. Unfortunately the x-rays up to the year 2000 are no longer available. There is a CT scan from 2009…..but this is all rather academic.

By now the results from the blood test appeared on the system – platelets 60, the lowest ever, but white cell and red cell counts normal. This suggested a platelet specific problem, not a general blood disorder.

We went though my list :

1) What involved in a bone marrow biopsy? It’s carried out under local anaesthetic by introducing a needle into the hip bone (?) and taking a small sample of marrow and then using a slightly larger needle to take a small core. Will it hurt? You’ve got Crohn’s disease and had surgery so you’re used to pain. The most uncomfortable bit is injecting the local anaesthetic. Some patients don’t even feel the biopsy needles being introduced.

2) Do I need to take any special precautions if I have teeth extracted? Unless your platelets fall below 50 then extraction should be OK. You might want to have a clotting gel available to stop your gums from bleeding. If your dentist is worried he might want to refer you to the specialist Dental School at Guys.

3) How regular should I be having blood tests and are there any special things to test for? Six monthly at your outpatient appointments is fine. You could ask your GP for more frequent ones. The only special test would be for clotting.

4) Is there any possible link between low platelets and diet? (A bit of a long shot this one but I due to see the dietician in a couple of weeks time). No.

Back to reception to book the biopsy and the follow-up appointment. I was offered the biopsy for the next morning. Unfortunately I wasn’t going to be in London so declined. “We have a slot at 3.00pm next Wednesday, is that any good?”. Excellent and the follow-up appointment was set for the week before Christmas.

The next day I got a phone call from the doctor asking me to forward a copy of the email correspondence for inclusion on my file. I told her that the biopsy was planned for one week’s time and she sounded genuinely surprised it was so soon. I mentioned that the follow-up appointment wasn’t until December and wondered if it should be brought forward. She assured me that once the biopsy results were available she would be in contact with their findings. Roll on the biopsy.

Wednesday 2nd October – Bone Marrow Biopsy

The procedure was planned for 3:00pm. In the morning I had told various colleagues that I wouldn’t be around after lunch and explained why. Every single one of them uttered the same 3 words “that sounds painful”. After you’ve heard it for the umpteenth time a few nagging doubts set in but I remembered what the haematologist had said last week “You’ve got Crohn’s. You’ve had operations. You’ve dealt with pain! This will be nothing by comparison.”

Guy’s Hospital in the shadow of The Shard

I set off in good time, (if you’ve read any other posts you will know that I always do), and arrived at Guy’s twenty minutes early, checked in and waited to be called. A nurse came over and gave me an identification wristband as the procedure would be carried out in the Day Hospital section. She said that I shouldn’t have to wait too long.

It was around 3:30pm when the doctor appeared. Her first reaction was “have you come alone?” That sounded a bit alarming. I asked why I would need to be accompanied and she replied that most patients were nervous about the procedure and liked to have someone with them.

She showed me into a treatment room. I took my shoes off and ay on my right hand side on the bed. She explained what she was going to do, where the needles would be inserted and then did the usual risk assessment talk. There was not a lot that could go wrong as the needles go straight through the skin into the hip bone and nowhere near any vital organs. I signed the consent form and we were ready to start.

I asked how long it would take for the results to be available as my follow-up appointment was planned for mid-December. She replied that they should be available in 4 or 5 weeks and they would contact me if anything untoward showed up. I asked to be informed even if nothing showed up as I didn’t want to wait until the appointment to find out.

She asked me to pull my knees up to my chest and adopt a foetal position. She felt around to find the best location for the needle and then thoroughly cleansed the area. This was followed by a series of shallow injections of local anaesthetic and was the most painful part of the whole experience but really not too bad. Certainly nothing to get hung up about. Some deeper injections were made but by now the first set of injections was working so I felt very little. A few minutes later it was time for the first sample needle to be inserted.

The slides

The aim is to get a liquid sample (aspirate) that can then be spread onto microscope slides for an initial examination within the department. She was having problems getting a good sample that wasn’t contaminated with blood as it kept clotting (which goes against what you would expect from low platelets). Because I was tolerating the needle so well she took some more samples but explained that the as long as she could get a good core sample then the quality of the liquid samples wasn’t important.

Time for the coring needle, which is quite a bit larger than the previous one. If you’ve ever seen one of those food programmes about cheese no doubt there will have been a scene where the cheesemaker inserts a tool into the cheese and pulls out a nice sample. Same principle here!

It takes a fair amount of force to push the larger needle through the outer layer of the bone. I could certainly feel it as it went deeper in. It wasn’t so much pain as a dull ache that traveled into the leg. After a couple of minutes of pushing the needle into the right depth it was withdrawn and the sample released. She was very pleased with the resulting core and set about dressing the puncture wound.

Bone marrow core sample

I then had to lie on my back for 15 minutes whilst the blood clotted and sealed the wound. I was told that a nurse would come and tell me when I could go. After 20 minutes or so she came in and looked at the wound. It was fine so back on with my shoes and down to the station to catch the train home.

The procedure room

Throughout the procedure we talked about low platelet counts, possible causes, what the tests would show, the fact that my red and white cell counts were normal, my Crohn’s history, empowered patients etc. It was very informative and kept me at my ease.

If you have got to have this procedure done it really is fairly painless. Once the initial local anaesthetic has been injected it’s pretty much plain sailing.

24th October – “Please relax this weekend”

I had added a reminder into my calendar to email the consultant after 5 weeks and ask if there had been any news. I needn’t have bothered as they were already “on my case”.

On 24th October I received an email saying “your bone marrow is being discussed with the Histopathologist and Dr. xxxxx will write to you with the results. We will see you in clinic in December.” Straight onto Wikipedia and I now know that a Histopathologist is someone who carries out “microscopic examination of tissue in order to study the manifestations of disease”.

I replied by asking if, once the discussions had been concluded, they could email me with an indication of what they had found  I explained that I had rescheduled my appointment for the end of November so that it preceded my Gastro appointment in early December. Last Friday I received another email saying that it would be easier to discuss the findings in clinic. Whoa. Did that mean – nothing to worry about, it can wait; or it’s serious and we want to tell you face to face?

I’m pretty laid back about my health nowadays. I’ve had enough shocks along the way to just accept whatever will be will be but I was starting to get an uneasy feeling. There was no way I would relax over the weekend knowing that the results had been assessed but I was in the dark. Time for another email “…I wonder if you could just put my mind at rest that you haven’t found anything too serious otherwise I won’t be able to relax this weekend!”

Within a few minutes this came back :

“Please relax this weekend. We have reviewed your bone marrow in our multi-disciplinary meeting and there is nothing sinister to report. The findings suggest that your marrow is underproducing platelets rather than it being an immune cause that we had presumed secondary to your longstanding history of Crohn’s. This may be due to previous Azathioprine use…….I look forward to seeing you on 20th November and we can discuss this in person and in more details then. In the meantime – I hope this reassures you.”

I thanked the doctor for her prompt response. I can relax until I see her on 20th November, apart from having to go to work, commuting to London and worrying what effect the fireworks will have on our dog and ponies. (Cut to gratuitous picture of dog and ponies for light relief)

Next stop – 12th November – upper GI endoscopy to see if my esophageal varices have regrown and to band them if necessary. Obviously I’m hoping that they find nothing as you can only eat sloppy food for four days after any banding otherwise the food might dislodge them. For what happened please see the post entitled “Upper GI Endoscopy”.

Haematology – 20th November 2013  Today’s appointment was to go through my bone marrow biopsy results. Even though I had already had the email a couple of weeks back telling me that there was “nothing sinister to report” but it was always at the back of my mind that there might be something significant that needs discussing face-to-face.

I got to the clinic early to allow time for the obligatory blood test. With that over I settled down to wait for one of the consultants. After 15 minutes my usual doctor collected me and we went into a consulting room. She started our conversation with “Yours is not a simple case…..”.

She had printed out two biopsy reports – one for the recent bone marrow procedure and the other for last year’s liver biopsy (which I had not seen before – more of that later).

The bone marrow results had been discussed at the MDM (multi-disciplinary meeting) and the initial conclusion was that they were “in keeping with early/low myelodysplastic syndrome, histologically suggesting MDS-RCMD.” She knew that I would have looked this up on the net and then probably have been worried/distracted by the potential links with leukemia. That’s why the report hadn’t been emailed to me.

(This is a quote about MDS from – “The disease course is highly variable, from indolent to aggressive with swift progression to acute myeloid leukaemia (AML) in 30% of cases.” I think she made the right decision to want to discuss it in person.)

She went on to say that she was not completely happy with the MDS conclusion because a bone marrow biopsy looks at two substances – the marrow itself and the aspirate, that’s the bone marrow liquid. When I had the original procedure the doctor said that she was not getting good aspirate slides as the blood in the samples kept clotting. After several attempts, but with little success, she decided to concentrate on taking a good bone marrow core.

“It’s like having a three piece jigsaw from which two pieces were missing.” So at the next MDM they had discussed the results again and decided that, in my case, it was unlikely to be MDS but would recommend a further biopsy to get useable aspirate samples. “How would I feel about this?” I replied I really wasn’t fussed, the most painful bit was the initial injection of local anaesthetic. If it would help narrow down the diagnosis then the sooner the better. She explained that this time they would use Heparin with the sample needle as this should prevent the blood from clotting.

If the diagnosis wasn’t MDS then why the low platelets? The most likely cause was a combination of long term Crohn’s and taking Azathioprine. The biopsy had shown that the marrow was under-producing platelets rather than being over active and eating them up. I was unaware that there is a potential link between Crohn’s and bone marrow. (I’ll do some further reading up on that one)

Using my blood results I’ve plotted my platelet count vs. Azathioprine dose (click to enlarge)

They had then gone on to discuss what the implications for treatment would be if it was/was not MDS. In either case the preferred course for treatment, at this stage, would be “do nothing” unless I was to have any procedures that could cause bleeding or that require surgery. A supply of platelets should be made available if either of these were needed. The difference in approaches would be in the monitoring regimes and we would discuss this further after the next biopsy results were available.

Back to reception to book up another biopsy (9th December) and 3 month follow-up appointment.

Included with the Haematology Report was one from my Liver Biopsy – if I thought blood was complicated then reading this report is mind boggling. I haven’t even tried translating it into easy-to-understand terms. Here’s a sample :

“Features of cholangiopathy, with slight cholangiocyte disarray, occasional juxtaportal hepatocytes containing copper-binding protein deposits, and scattered ceroid-laden macrophages in portal tracts. Patchy mild portal-tract fibrosis with perisinusoidal extension and early spurring. Macrovesicular steatosis of hepatocytes (5% of parenchyma). Slight centrilobular sinusoidal ectasia noted. Crohn’s disease with splenic vein block (clinical diagnosis), see comment. An early stage of primary sclerosing cholangitis is a possibility. Correlation with imaging-study findings appears in order. I can not suggest an aetiology for the slight sinusoidal ectasia observed.” 

Next Appointment – 2nd December to see my gastro-enterologist. Will be interesting how all these strands come together.  I’ll also get the result of the calprotectin test that was done recently. It will be a good pointer as to whether my Crohn’s is active/inactive and consequently what the future treatment plan is likely to involve. If it is still in remission then is it better to continue without any medication for as long as possible or would it be better to start taking precautionary doses? I get the feeling that the answer won’t be a simple one.

If you’ve looked at some of my earlier posts you may have read about the problem I have had with not getting  follow-up letters out of Haematology in a timely manner. This was brought home to me when I saw my gastro-enterologist last Monday (2nd December). He was unaware that I had seen the haematologist to discuss the results of original biopsy; that there were implications for restarting Azathioprine; that a second procedure had been arranged and all because there was no letter detailing all this on my file. (He very helpfully went on to say that a bone marrow biopsy was the one test he really wouldn’t want to go through himself!).

9th December – Haematology Day Unit – Guy’s Hospital

Biopsy II Day. A beautiful, sunny winter’s day. Took the District Line down to Monument and then a stroll over London Bridge, underneath The Shard and on to Guy’s Hospital.

The Thames from London Bridge


The Shard appears to have grown arms

I arrived in plenty of time, was wristbanded and waited for a doctor. She appeared a short while later and I was taken to a cubicle in the day ward. She went through the usual risk review and got me to sign the consent form.

Then, for the second time, the value of follow-up letters became apparent. The doctor had referred to my notes and found the latest letter on file, dated September. She was unaware of what had happened in the interim, that this was to be a second sample attempt but with no need for a marrow core this time. It’s a good thing that I had taken this all in, together with the plan to use Heparin to stop the blood from clotting otherwise it would have been back to square one and a third biopsy. (Whilst this blog sometimes goes into too much detail it is proving useful when follow-up letters aren’t forthcoming and I want to recall what we said at an appointment)

She went off to find the Heparin. When she returned she laid out the various bits of equipment – swabs, needles, instruments of torture, local anaesthetic etc. She got me to arrange my clothes so she could access my hipbone and to ensure any leakage missed them. I then rolled onto my left hand side and draw my knees up onto my chest.

Instruments of torture (luckily the largest one wasn’t needed)

Last time it was the local anaesthetic injections that stung the most but this time they were outdone by the sample needle. I think a couple more minutes to allow the anaesthetic to work and it would have been fine. She looked at the first slides but they weren’t quite as she wanted, probably due to the Heparin. She asked if it was OK to go back in with another needle to get a second sample. This time I felt nothing apart from a liquid trickling down my back. It could only be blood. Slightly unnerving. Clearly the Heparin had worked. She was now happy with the slides and showed me what they were looking for. To prove how truly sad I am I asked her if I could take a picture of a “correct” slide.

This slide was the one chosen for further examination

She cleaned up the “leakage” and put a dressing over the puncture. It was then a 15 minute wait, lying on my back, to ensure everything had started to seal itself. She warned me that it was likely to need a new dressing before I left hospital due to the action of the Heparin. After 15 minutes a nurse came and changed the dressing and I was allowed to go back to work.

Now I have to wait for the results. Can’t believe it – I forgot to ask how long that process would take. Must also chase up the follow-up letter but quite frankly I’ve had enough of appointments and procedures for this year. I just want to chill out and try and forget about medical matters. The follow-up appointment is set for 19th February.

Wednesday 19th February – Haematology II – Guy’s Hospital

The first appointment of the year and really unprepared for it. It’s only two months since the last one but I’ve already got out of the habit. Traveling up to the London on the train in the morning I realised I hadn’t even got a list of questions to ask. When I got to my office I printed off the account of my last trip to Haematology, just to jog my memory (see post – “Bone Marrow Biopsies, Follow-up and Results…well sort of”). I then re-read the post “Managing Consultants and Appointments” to make sure I put into practise what I preach. By the time I set off for Guy’s Hospital I had managed to write down 7 things I needed to ask or mention on a good, old fashioned Post-It note.

List of questions for Haematology

Appointment was for 10:00am so arrived 15 minutes early for the obligatory blood test. The phlebotomist asked me if I knew why she was also taking a “histological” sample, but I didn’t.

Back to the waiting area and at 10:00am my usual doctor appeared, greeted me warmly and we set off for a consulting room. She introduced me to an American medical student, who was over in the UK to see how things are done in the NHS, and checked that I was OK with someone else present during the consultation.

She explained that after the last bone marrow biopsy one of the samples, which should have gone for histological testing, had either been mislaid or mislabelled so did not make it to the histologist. This is why she had rung me a few weeks back to explain the situation. She had however looked at the other slides from the second biopsy and these were fine. She had discussed the missing sample with the chief histologist and he suggested doing a particular type of blood test which had proved to be 60% effective in spotting problems, if there were any. The results would be available in a week’s time. The alternative was to have a third bone marrow biopsy but they didn’t want me to put me through that again. I’m really not that fussed.

…and so to the list :

1) Long term prognosis – will not affect the other  issues I have – Crohn’s, potential PSC, PVT. Must avoid use of Azathioprine in the future. Today’s platelet count = 74, an increase of 18, but don’t get hung up on the numbers as I am currently asymptomatic ie. I don’t bleed profusely if I cut myself.

2) Cause of low platelets – no signs of any marrow abnormalities which could have pointed to a more sinister conclusion ie. leukaemia therefore cause is drug induced – long term use of Azathioprine.

3), 4) and 6) Treatment – none required but look out for any signs of starting to bleed more easily. Six monthly blood tests and outpatient appointments. A platelet count of 50 is the threshold for having minor surgery or teeth extraction so no need for special measures at present.

5) Medical Synopsis – some inaccuracies had crept into the synopsis at the top of the last follow-up letter. I wasn’t sure if they were significant but we went through them one-by-one and put them right. (I had already emailed my gastro consultant a few weeks back with the correct information)

7) Follow-up Letters – this was an area where we had had issues in the past. I requested that follow-up letters were sent out as soon as possible after an appointment as the last time I saw my gastro consultant he was unaware of my bone marrow biopsy etc. She promised to improve the timing in future and would write to me as soon as the histological results were back.

I mentioned that as part of the NHS Change Day (3rd March 2014) I had pledged to give feedback to my consultants on the service they provide (whether they wanted it or not!). This was my first chance to put the pledge into action. She thanked me for my feedback.

10:20am appointment completed and on way back to work


The low platelet issue had originally been “parked” but in September 2013 I felt that we really should investigate it further so we could decide if Azathioprine would still a viable drug for treating my Crohn’s and  to make sure there wasn’t a  more serious underlying problem. My gastro consultant supported this and the investigation started.

Two bone marrow biopsies later and we have the answer. The low platelets are not indicative of a bone marrow abnormality but are drug induced with the likely cause being to 8+ years of Azathioprine. It is a known side effect of this drug. Azathioprine is sometimes used to maintain Crohn’s remission but if I get to the point where I need to go back on medication it will not be considered as an option.

The low platelets can return to their parking bay.

…and the implications for other Azathioprine users? The above is just MY experience of taking that drug and as we all react differently to medications you should not assume you will end up in the same situation. Whilst I stopped taking it when we realised there was a potential problem it has not damaged my bone marrow sufficiently to need to take further action. The haematologist described it as like having a “four cylinder engine but only running on three”. Would I have agreed to starting Azathioprine back in 1998 if I knew then what I know now? Yes. For nearly ten years it kept surgery at bay so that when the knife became inevitable I was in a much better position both financially and mentally to cope.