Category Archives: PSC

Lucky Bleeder

This is an edited version of the chapter “Lucky Bleeder” from my book “Wrestling he Octopus”

Saturday 26th May 2012 – I was starting to feel rough again and would see how it went over the weekend as, fortunately, I was due to see my gastroenterology consultant the following Monday. Towards the end of dinner my body told me not to eat any more, not another mouthful. Normally the message is: “you’re starting to get full, slow down” but this was a definite: “stop immediately“. I had never experienced such a clear signal before.

Sunday 27th May 2012 – I had a simple breakfast but afterwards didn’t feel like eating anything else. I could only manage a little stewed apple for lunch but reassured myself that this could all be sorted out when I saw my specialist.

Monday 28th May 2012 – Guy’s Hospital – Gastroenterology – the original intention was to go into work, as usual, then catch the Tube down to London Bridge in time for my ten o’clock appointment.

When I woke up I was feeling unwell and decided to catch a later train, going directly to the hospital. I was used to an early start with virtually no traffic so rather underestimated how long it would take to get to the station from home. By the time I arrived I could hear the train pulling into the platform. I didn’t realise that it would wait there five minutes before leaving so tried to run for it 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 on the train I managed to take some deep breaths and gradually return to some type of normality. The rest of the journey was uneventful.

I made my way to the Outpatients’ department and waited to see my usual  consultant. I went through my list of queries and  went on to discuss my recent experiences of 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.

Eventually I was on my way home and by now the temperature was high. By the time I arrived home I was feeling 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… (skip the next paragraph 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 and just sat there looking at the mess for a few minutes, thinking “What do I do now?” (Not like me at all. I usually react quickly to these little set backs, decide the best action to take and get on with it, but this was something I hadn’t experienced before. I will admit that for a while I simply couldn’t cope).

When my senses returned I decided that this was definitely a 999 moment. My wife made the call and I could hear her responding to the long series of questions that you then get asked by the operator. The decision to send an ambulance was made and she then hurried herself to put some things into an overnight bag before the ambulance pulled up our driveway. She hadn’t quite finished as the ambulance arrived. Five minutes from call to arrival. 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. 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! It wasn’t.

I was loaded into the ambulance and then went through various tests before we set off. They were obviously concerned 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 A&E 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 to send me to. The decision was taken to admit me to the Medical Assessment Unit where I underwent a further examination.

Now that I was stable and had made it to a ward there seemed little point in my wife staying. I had spent long enough in hospital environments to be perfectly happy to cope on my own. My sister had turned up to take her home so we said our goodbyes and I waited to see if I would be moved again.

My wife returned home and had to clear up the blood from the floor. I’m so lucky to have someone tough enough to support me when things are going messily wrong. As she always points out: “Women get all the good jobs”.

Back in the hospital they decided to send me to the ward which specialises in gastroenterology and I was wheeled off to this new location. I was seen by a duty doctor who made sure I was comfortable and worked out what drips I needed.

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. The ward was in the new section of the hospital and had only been opened three months previously.

I quickly discovered that Charlwood Ward was close to the nurses’ accommodation block. I can guess where your thoughts are leading at this point but my joy was due to having unlocked access to their wi-fi.

During the day I saw various doctors who were trying to decide the cause of the problem and which tests I should undergo. Their initial thoughts were that my Crohn’s could have started up in my small intestine or it could be gastritis or even an ulcer. The immediate priority was to have a camera down my throat (an OGD – oesophago-gastro-duodenoscopy) to see where all that blood had come from and, depending upon the result, follow up with a colonoscopy. They tried to get me onto that day’s list 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. The doctor was very surprised at how calmly I reacted when I was told that I wouldn’t be having the test done that day and said she wouldn’t have been so laid back. I can only think that my attitude was driven by realising that I was in the best place, should I suffer from further blood loss, and that an extra day in a “safe” environment should not be seen as a problem.

It was decided that I needed to have a transfusion as my blood count had fallen to 6.5.  A second drip was added and fed into the cannula in my left arm. Cannulas can be inserted anywhere that a good vein can be found so are usually into the back of the hand or in the forearm at the wrist or further up, close to the elbow. My one had been inserted in such a way that if I bent my elbow it would cut off the supply. I spent most of the day forgetting to keep my arm straight which meant the alarm kept sounding and the nurses had to reset it.

Wednesday 30th May 2012 – When the doctors turned up for the ward round I asked them to ensure that I was on the endoscopy list and that whilst I had accepted that yesterday’s cancellation was due to circumstances beyond anyone’s control, I wouldn’t be so laid back again. Back to being “Nil by Mouth”. The blood transfusion had brought my blood count up to 8.6, still low but improving.

I had learned from previous experience that it is important to make a list of any questions you want answered. I had written down a dozen or so items and we went through them one by one. A lot would depend upon the outcome of the endoscopy and there were some issues to be discussed with the consultant. As luck would have it he appeared and I was able to ask him what the prognosis was. Again it would really come down to what the ‘scope showed.

Just after noon I was wheeled down to the endoscopy unit, adjacent to the ward, and into the new waiting area. When I entered the procedure room the doctor asked if I’d had a gastroscopy before. I replied: “about 12 years ago“, to which he responded: “you’ll be pleased to know that the tubes have got smaller and the drugs more powerful“. I didn’t take in much of what was happening and the next thing I knew I was waking up ready to be wheeled back to the ward. I couldn’t feel where the tube had been put down my throat. Definitely an improvement over my previous experience.

Back onto the ward and the wait to find out what the gastroscopy had revealed.

Thursday 31st May 2012 – as ten o’clock approached it was my turn to talk to the doctors on the ward round. They were expecting the gastroscopy to have shown that I had an ulcer, which had burst, or that the Crohn’s inflammation had spread. What they found surprised them – oesophageal varices. Prominent veins growing in the lower third of my esophagus and usually related to alcoholism! I looked them up on the internet and found that there is a possible link with the azathioprine drug that I had been on for seven years.

The next step was to have an ultrasound scan to look at my liver as they wanted to rule out portal vein thrombosis. This takes the form of a clot forming in main vessel that carries blood from the gastro-intestinal tract, gallbladder, pancreas and spleen to the liver. A blockage can cause new veins to grow to relieve the pressure and these may appear in the esophagus. They hoped that the scan could be done the next day.

Not wanting to lose more time I made sure that the nurses knew I was expecting to go for the ultrasound scan today, not tomorrow. It worked and they gave me an lunch early as I was on the list for the scan at 6:30pm.

Meanwhile one of the registrars spoke to my consultant at St.Thomas’ to appraise him of the situation and sound him out regarding starting steroids should it turn out that Crohn’s had re-emerged. He told the registrar that he had planned carry out another colonoscopy before making that decision and wondered whether the suspected liver damage could be due to the azathioprine.

As usual the nurses were tremendous. It wouldn’t be fair to name them but one came in to see us in the early afternoon to check our ward was OK and she looked very upset. She said that it had been a hard day and that one of the patients had suffered a heart attack from which they didn’t recover. She said that even after all her years of nursing she had to go outside and have a cry.

At a quarter past six the porter turned up to wheel me down to ultrasound. I was happy to walk but he had a chair so I got onboard and off we went with him singing away and saying hello to everyone we passed, all of whom he seemed to know personally. We even passed a pregnant woman to which he commented: “it’s a girl, love”. When we got down to the ultrasound area there were two women waiting. He pushed me into a position so I was facing both of them and said: “I’m sure you’re man enough to handle two women” and left me there. Ice well and truly broken

It was soon my turn to go into the scanning room. After a few minutes’ wait I was laying on the table, covered in KY jelly, and with the scanning head being run all over me. (I’m sure some people would pay good money for that). The scan was expected to show some damage to my liver but didn’t appear to. I would need to wait until I saw the doctor to go through the full results. It was time to return to the ward. Visiting time was due to start in five minutes. I hung around for a while waiting for the porter to reappear but there was no sign of him. The X-ray nurse took pity on me and said I could walk back to the ward with my notes. It meant that I got some much-needed exercise and was back in my bed for when my wife turned up.

Friday 1st June 2012 – there was a much-reduced number of doctors on the ward round. When they arrived at my bed I asked what the outcome of the ultrasound scan was. It showed slight splenomegaly (enlargement of the spleen), a 14mm gallstone but no hepatic or portal thrombosis. The doctor’s notes finished up with: “Explained to patient unknown cause for liver issues. We need to further investigate…

With the Bank Holiday weekend coming up I knew everything would go into limbo. At weekends there was a team of doctors that covered the wards but only saw patients that were causing concern. Staving off the boredom was going to be difficult. I asked if I could at least spend Sunday at home and had been told there shouldn’t be any reason not to.

Late afternoon one of the doctors came in to see me. I told him that I was planning to spend Sunday at home. He was concerned that my blood count had decreased to 8.0. The decision on being allowed out for the day would be made tomorrow when the next set of blood test results were available. I pointed out to him that there would only be a skeleton staff of doctors on duty and asked if they would have time to check my blood test results. He wasn’t sure. When my wife turned up in the evening I had to tell her that my planned trip home on Sunday was in jeopardy.

Saturday 2nd June 2012 – I had my blood sample taken as usual but never saw a doctor. I said to the sister that there was some doubt as to whether I would be spending Sunday at home. She replied that there was no reason to stop me and that some doctors always “dithered”. My day of freedom was back on.

Sunday 3rd June 2012 – it was nice to spend a few hours at home with my wife. Our dog seemed pleased to see me, partly because I didn’t play my guitar. I even got to fill the haynets and make up the dinners for the ponies.

I returned to the hospital just as they were serving up dinner – pasty in a sea of baked beans. Crohn’s patients are supposed to avoid high fibre foods but it looked very appetising and the ward was well ventilated so I thought what the hell and enjoyed every mouthful.

Monday 4th June 2012 – Spring Bank Holiday – more limbo because of the Bank Holiday. The only doctors on duty were seeing patients by exception. I could have spent another day at home but realised too late.

The phlebotomists did their usual rounds and I later found out that my blood count had dropped back again to 8.0 from 8.6. Not good and it would prolong my stay in hospital. The sister said that the doctors would be doing a proper ward round tomorrow so there was time to get a list of questions together for the morning.

My evening was spent watching the Jubilee Concert. We had applied for tickets and would have been disappointed if, having managed to get any, had then not been able to use them.

Tuesday 5th June 2012 – The Queen’s Diamond Jubilee – I didn’t get a particularly good night’s sleep as the patient next to me had his overbed light on all night. I couldn’t be bothered to get it switched off. I knew that whatever sleep I had missed could be made up for during the day. There was always a lull in Ward activity after the beds have been made and before lunch was served. By having a shower as soon as the fresh towels were available you could keep out of the way of the bed making and when you finished there’s a nice fresh bed to doze in.

I suspected that at some point I would meet my former consultant. That’s the one I had emailed around a year previously stating that I was now being treated by St.Thomas’ and not to bother to make any further appointments. I had a very good reason for doing this and I have subsequently found the chain of email correspondence that corroborates this.

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, from a year ago, was clearly still bugging him. The atmosphere could be cut with a knife.. I reiterated my original reason for leaving his care and this may not have helped the situation. (His point of view was recorded in the ward notes). At one point he suggested that maybe it would be best for me to be put in an ambulance and transported up to St.Thomas’. The decision to move my treatment had not been taken lightly as it was far easier to get to the local hospital, 10 minutes from home, than to catch a train to London but I was now more convinced than ever that I had made the right choice.

At the end of a long and detailed discussion on what may have caused my current situation, and whilst the junior doctors listened on, we ended up agreeing that we should do what was best for my long-term health and shook hands. Subject closed. It was time to move onto the tests required and the best place to have them carried out. 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 thought that they were symptoms of a malfunctioning immune system and also linked to my thrombocytopenia (low platelet count) and enlarged spleen. I thought that the platelets issue had been brought on by the use of azathioprine but he was now sceptical at this. There was then mention of needing a liver transplant. My brain went into overdrive. Internally I was saying to myself. Liver transplant? Liver transplant?? What would that involve? Wasn’t there usually a waiting list? More major surgery? Would my body cope? How soon? It would be something to mull over whilst killing time sitting in a hospital bed. “Mull over”? Maybe an understatement.

After the ward round was complete I called one of the junior doctors over and asked: “how do you spell that primary thing the consultant mentioned as I want to look it up on the internet”. 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 (more understatement). The simple definition of PSC is a chronic disorder of the liver, of uncertain cause, in which the bile ducts within and outside of the liver become inflamed, thickened, scarred, and obstructed.

Ultimately, if it was diagnosed, the long term prognosis was the liver transplant he mentioned! The only way of getting a definite diagnosis would be to carry out a liver biopsy. That would involve passing a long needle between two ribs and into the liver to take a core.

With regards to where the tests should be done and the subsequent treatment – I could not remember what we concluded. I think my head was filled with so many other thoughts by then. Fortunately the doctor’s notes record that, due to the complex nature of my Crohn’s, I would be better off remaining under St.Thomas’ as they had more extensive facilities than East Surrey. They were also equipped to investigate my latest problem. I would revisit that subject the next morning during the ward round.

I try to keep a cool head at all times so it didn’t take long before I started to rationalise the information I had just been given 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 been told“. When I caught sight of the IBD Nurse I asked her if she could answer some questions, including translating all the long words the consultant had used. She could tell by some of my questions that nobody had ever sat down and gone through some of the basic concepts of Crohn’s and their implications.

Back in the ward it was decided that I should be given another two units of blood. Since I hadn’t had any for a week another crossmatch was needed as they only last seven days.

One of the young doctors said he would insert a cannula so that he could take the blood sample and then use it for the transfusion. I asked him, in all seriousness, if he was an expert with cannulas. He replied that they were one of his routine tasks. My previous experience had always been if you want it done properly ask a nurse. Unfortunately I wasn’t wrong. He took three attempts to get a needle into my right arm. The third attempt resulted in a working cannula but it was in a very small vein and close to my hand. Very inconvenient when eating etc.

Later in the afternoon the first unit of blood was ready for infusion. The nurse connected up the pump and switched on. It hurt. She decided that I would be better off having a new cannula put into my left arm. Without any fuss or need for a second attempt she inserted the new cannula in just the right position, reconnected the blood and removed the old one. From this experience I formulated my first law of cannularisation – “Don’t let a doctor anywhere near one”.

In the evening my wife came to visit. I had already rung her in the morning and told her the potential diagnosis so she had a number of questions. When the IBD nurse came into the ward we called her over and my wife was able to ask some of the questions she had thought of during the day. It was great that she had this opportunity as I didn’t have many of the answers.

Wednesday 6th June 2012 – that must have been the quietest night so far on the ward. I slept until about 3am but then couldn’t get back to sleep until around 7am. 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 higher than 10 then I could go home. Today! I really hadn’t been expecting that. I had told everyone I was in until at least the weekend or possibly would be transferred to St.Thomas’. I now had to wait until around until 1 o’clock for my score.

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

I rang my wife and then my sister to arrange to be picked up in case the result of my blood test was high enough. I then decided to contact St.Thomas’ to make sure they were aware of what was going on and to ask if I should start taking the budesonide that I had been due to commence. I emailed my consultant’s secretary and received a prompt reply telling me that the dialogue between the two hospitals had started and to hold off the budesonide for the time being.

I didn’t want to tempt fate so held off changing into my going home clothes. Just after lunch I had the good news, escape imminent. I just needed Pharmacy to sort out my medications and for the doctors to write my discharge letter. I thought: “that can only take a short while”. How wrong I was. If I had known yesterday that release was imminent I would have found the pharmacist and ensured that sufficient quantities of drugs, with the right labels on, were ready for me. I started to wonder if they deliberately chose to employ the slowest of the slow. Could the criteria for getting a job there be turning up late for the interview?

I finally got away at around six o’clock. It took close to five hours to get the drugs out of the Pharmacy. If I had known it would take that long I would have gone home and returned later. I don’t usually do “wound up” but this was an exception.

I was now resigned to yet another string of appointments and procedures to try and get to the bottom of my latest crisis. Was a liver transplant a real possibility?

Subsequently I had my first variceal banding on 3rd September at GSTT and then a further 3 sessions, at 3 week intervals, until the varices had been obliterated. Since then my Christmas treat is an annual endoscopy during the 3rd week of December.  So far I’ve only needed one session of banding, in 2014.

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”

 

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 showed 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.