Category Archives: variceal banding

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.

Haemophilia Clinic

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

Wednesday 7th February 2018 – Guy’s Haemophilia Clinic

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

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

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

I had previously been told that Crohn’s patients undergoing a flare are more susceptible to blood clots but not why. She explained that when undergoing a flare the blood becomes extra “sticky” to combat the inflammation. The portal vein carries blood from the gastrointestinal tract so is a common place for a clot to form. The body compensates for the blockage by growing new veins (varices) around the clot but a back-pressure can build up which in turn causes the spleen to enlarge and, in my case, varices to grow around the gallbladder. They would be an added complication should I need to have a cholecystectomy.

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

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

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

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

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

The Long Walk

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

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

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

Trafalgar Square – National Gallery

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

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

Loose Ends

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

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

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

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

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

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.

Crohn’s Disease – Testing Time

Apart from the physical and psychological effects of Crohn’s Disease there’s one aspect that I don’t see mentioned that often – the huge amount of time that patients can spend attending appointments and undergoing tests or procedures. Just how disruptive this can be was brought home to me after my ileal re-section in October 2010.

To give you a flavour of the types of tests and procedures Crohn’s (and related conditions) can require I have pulled together all the different types I’ve been through over the years. Apologies if this rather labours the point. As with all things Crohn’s related these are my experiences, yours may be completely different.

BARIUM MEAL AND FOLLOW THROUGH
18th May 1999  – Mayday Hospital

I can still clearly remember this test at Mayday Hospital as if it was yesterday. As with many of the procedures there was the prep to take the day before which effectively emptied my digestive system. I arrived at hospital and changed into one of those backless gowns that are impossible to fasten properly without help. It was then back to the waiting area. Just putting on the gown already lifts the stress levels and sitting like that in a waiting area just makes it worse.

The first problem was swallowing the barium meal – a thick, off-putting, tasteless sludge. Having downed the final mouthful there was then a wait whilst it made it way slowly round my digestive system. I was taken to a bed and told to lay on my right hand side for 45 minutes as this would aid digestion. When the time was up I was shown into the x-ray room.

I lay face up on the x-ray table whilst the radiographer took a preliminary scan but was not happy with the result. He was having difficulty in getting the barium meal to move around my system due to a stricture. He produced a rubber beachball which he placed between the x-ray head and my abdomen. He then proceeded to bounce it up and down and it slowly did the trick. The x-rays showed that the terminal stricture was as bad as ever. My bowel was down to the size of my little finger. Unfortunately the x-rays taken at the time are no longer available.

As a result my consultant gave me the choice of starting Azathioprine or having surgery. I chose the drug route.

BARIUM ENEMA
March 1978 – Mayday Hospital

I haven’t had one of these for a long, long time. I thought they had probably been phased out by the introduction of CT and MRI scans but I believe they are still used.

Of all the procedures I’ve been through I think this is the most undignified. Having taken the usual purging prep the previous day, arrived at the hospital and changed into a gown, I ended up on a bed with a tube stuck where the sun don’t shine and barium liquid being poured down it. Once I was “full” the instruction came “to try and to hold it all in” whilst the tube was removed and the x-rays taken. Just writing this I am clenching my buttocks as I remember that feeling of the tube being gently withdrawn and then it’s all down to muscle control.

Once the x-rays were done, there was the dash to the nearest bathroom to allow what went in to come out, rapidly. I think I’d sum up the whole experience as unpleasant and the most likely to end in a very messy situation involving embarrassment, mops, buckets and cleaners.

BONE MARROW BIOPSY
2nd October 2012 – Guy’s Hospital

The procedure was planned for the afternoon so I went into work as normal. That 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. The previous week I had asked the haematologist if it hurt to which  she replied “you’ve got Crohn’s and had surgery. You’ve dealt with pain! This will be nothing by comparison”.

I checked in to the clinic and given an identification wristband as the procedure would be carried out in the Day Hospital section.

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. Whatever.

She showed me into a treatment room. I took my shoes off and then lay 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.

I pulled my knees up to my chest and adopted a foetal position. She felt around to find the best location for the needle and then 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.

Instruments of Torture
Bone marrow biopsy slides

The aim is to get a liquid sample 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 cheese-maker 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

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.

CALPROTECTIN – I’ve kept this one in for completeness. The procedure is very simple – collect stool sample; send to path lab; wait  to see if they have managed to lose the sample or come up with a lame excuse for not processing it. If they have then repeat procedure; if they haven’t then wait at least 10 days for result. Research has shown there is a good correlation between the calprotectin result and what would be seen by a colonoscopy. I am very definitely the exception to the rule.

CAPSULE ENDOSCOPY

See this post – http://www.wrestlingtheoctopus.com/fantastic-voyage/

COLONOSCOPY
Saturday 11th March 2017 – St.Thomas’ Hospital, Endoscopy Suite

This wasn’t going to be a “normal” colonoscopy but I knew what was involved and the lure of having a procedure within two weeks was enough to secure my agreement to what followed.

The preparation in the lead up to the scoping followed the usual pattern of fasting and drinking Citrafleet. The advice leaflet suggested taking the second dose on the morning of the procedure but if they thought I was going to make an hour’s journey on a train within a couple of hours of drinking the solution then they were wrong. I took the second dose late the previous night.

The day of the scoping arrived. By 10:30 I was wristbanded and cannulated. I went off to change into a pair of very stylish paper boxer shorts  with a velcro flap up the back. (Of course I put them on the right way round first time!) Once I had donned  hospital and dressing gowns it was into the male waiting area until they were ready for me.

Eventually the Gastro registrar appeared and went through the procedure. He explained that he would start off and then hand over to the lead consultant when we were joined by the audience (via a video link). We agreed I would have minimal sedation as I wanted to be able to watch the images and ask questions.

He lead me down to the procedure room where I was greeted by the nurses. Whilst I was being prepped we discussed the use of azathioprine and potential bone marrow suppression. We also touched on Crohn’s and the link to portal vein thrombosis. I hadn’t realised that patients with active disease are more prone to clots such as DVT. Everything was now ready. The lead consultant came in and introduced himself.

I was asked to adopt a fetal position and, with a liberal handful of KY jelly, the scope started it long journey northwards. The image appeared on  a large screen above us. In the bottom left hand corner there was a feature I hadn’t seen before. The consultant referred to it as the “sat nav” and it showed the position of the endoscope in the colon.

It was not an easy journey as my sigmoid was tending to loop as the scope attempted to pass through. There was a lot of changing position – lying on my right side, left side or back – and lots of pressure put on my abdomen by one of the nurses pushing down, hard. It was also a long journey as the aim was to go a short way into the small intestine past the anastomosis (the rejoin after my temporary ileostomy).

In the room next door my regular consultant was acting as chaperone to the group of international gastroenterology students who had come to St.Thomas’ to see “how we do it” in the UK. The screen on the wall flickered into action and two way communication was established. He briefly outlined my Crohn’s history and I was able to fill in some of the details. He explained the MRI issue that needed resolving and called up a copy of the report from my electronic file.

With a lot of perseverance, and gas to inflate the gut, the scope had reached the rejoin. I wonder whether the distraction of the video link caused me to relax and let the scope pass more easily. From then on the consultant gave a running commentary on what appeared on the screen. It was fascinating and informative. There was a debate between the 3 gastros as to which Rutgeerts score they would give my anastomosis. Was it i0, i1 or i2? The conclusion – i0 – no signs of ulceration.

Next they went through the MRI report and the scope was moved to the locations identified to see if any strictures were present. None found. One of the consultants remarked – “Scope 1 – MRI Scan 0”.

One thing that was apparent throughout my gut was a slight reddening (erythema). The scope was zoomed in to examine it and to look for any tell tale signs of active Crohn’s but found nothing.  The consultant decided to take a few biopsies. I had never seen this done on previous scopings so watched with a mixture of interest and cringing. What looked like a small crocodile clip appeared from the end of the scope and, under voice control, nipped into the wall of my gut. I waited for the pain but nothing, just a small trickle of blood. I suppose that is why you are given a mild sedative. He decided to take a deeper sample so the device went back into the same location and took a further bite.

By now the scope had been in for about 45 minutes and it was finally time for it to be withdrawn. Always a relief. But what about the raised calprotectin level? They would have to come up with a non-Crohn’s explanation for it. The lead consultant bade farewell and I was wheeled out to Recovery. Experience over. When else would you get a chance to listen in to 3 leading gastros discussing your case and with the evidence before your eyes?

Before leaving the unit I was given a copy of the Endoscopy Report, which I have reproduced below, and it included a possible explanation for the calprotectin result. We will have to wait for the biopsy results to be certain.

Endoscopy Report

The only downside was the length of the procedure. Usually I suffer no side effects from a scoping but this time I ached a fair amount for the next 24 hours.

CT SCAN
20th May 2009 – East Surrey Hospital

This CT scan took place before I started blogging in earnest so I don’t have a full account of what went on. It is, however, a very significant test in my history of Crohn’s and is the procedure that confirmed surgery was inevitable. I can remember I was desperate to have the scan as I knew things were going very wrong internally. Rather than just book an appointment I explained my predicament to the appointments clerk and said that I could be available at fairly short notice should a cancellation arise. It worked and I was seen within a few days.

I don’t remember much about the actual procedure apart from sitting in the waiting room having been told to arrive an hour early to drink some liquid. The liquid turned out to be water and I was presented with a litre jug and a glass. I wasn’t sure how I would get through it all so decided to set myself a target of downing a glass every so many minutes. It was a good plan until a very apologetic nurse appeared with a second litre jug and said I should have given you this one to drink as well. Daunting.

When I went for my next outpatient’s appointment in June the radiologist’s report was not available. The scan itself was on the system so my consultant opened up the file and we watched it on his computer screen. The first thing that struck me were the large areas of solid black that appeared. To my untrained eye they looked serious and I wondered if they represented growths in my abdomen. Luckily they were just air pockets which show up as black voids.

My consultant explained that the scan needed an expert to fathom out what was going on. He was not knowledgeable enough to be able to interpret what we were seeing. I was booked in to see him again in another two months time.

It wasn’t until that next appointment in early August that I was told the CT report was now available. The delay was because of the complicated picture with both ileal disease and the suspicion that I was fistulating from there into other parts of the small bowel, possibly the sigmoid. The suggestion was that I may have a localised perforation “with no definitive collection”. My consultant put it in layman’s terms – “It looks like you’ve got an octopus in there”, hence the name of this blog (and book).

FIBROSCAN
12th November 2012 – St.Thomas’ Hospital

Fibroscan of the liver. This is the non-invasive alternative to a needle biopsy. To quote from the unit manufacturer’s literature – “a mechanical pulse is generated at the skin surface, which is propagated through the liver. The velocity of the wave is measured by ultrasound. The velocity is directly correlate to the stiffness of the liver, which in turn reflects the degree of fibrosis – the stiffer the liver, the greater the degree of fibrosis.”

For this procedure you lie on a bed with your right side exposed and right arm above your head. Some jelly is applied to the probe and then it is placed against your side and triggered to send a pulse. This is repeated 10 or so times.

The machine then aggregates the scores and gives you a value. My value came out as 7.2. The nurse said that up to 5 was normal and above 12 would cause concern therefore my value showed that there were some fibrosis.

FLEXI-SIGMOIDOSCOPY

Just like a colonoscopy but with a smaller, shorter endoscope and I don’t remember taking any prep.

LIVER BIOPSY
Wednesday 12th December 2012 – St.Thomas’ Hospital

The day of the liver biopsy had finally arrived. I’d covered all the bases so it should all go smoothly. This is a standard procedure that is done every day but for some reason I’ve found the thought of it quite daunting. Not the actual procedure itself (although this is what Patient.co.uk says on the matter – “Although liver biopsy may be an essential part of patient management, it is an invasive procedure with a relatively high risk of complications“) but, in my case, the variables brought about by the low platelet issue.

Start time was set for 9:30 at St.Thomas’ and the letter said be there 30 minutes early to get prepped. I’m not allowed to drive for 48 hours after the procedure so organised a lift down to the station. I also needed to be escorted on the journey home so my long suffering wife accompanied me.

We arrived at St.Thomas’ well before 9:00 and made our way into the warren called Interventional Radiology. I booked in with one of the nurses and we were shown to a waiting room. The nurse came back with the consent form to start filling out and then disappeared. About ten minutes later I thought I heard my name mentioned together with “Where is he? They’ve been looking for him for 20 minutes”. A little bit disconcerting. We sat tight and the administrator appeared and said “Your platelets are very low and they are concerned about the procedure. You were expected in last night to get prepared. Did anyone call you? They’re going to try and ring you on your mobile”. I checked my mobile but hadn’t missed any calls.

At this point I could see the wheels coming off the wagon. Luckily I had brought with me a copy of the email trail which explained who I had spoken to and what I had done to make everything, supposedly, go smoothly. I explained all this to the administrator. She disappeared for a while and then returned to say that they were waiting for a call from one of the doctors to see how they wanted to proceed. By now we were approaching 9:30 so I could see my “slot” disappearing.

After a few more minutes the nurse re-appeared and put on my patient wristband. This was a good sign and then another nurse appeared with hospital gowns and slippers but told me not to put them on until the doctor had run through the consent form and I had signed it.

A few more minutes and the doctor appeared. Good news. The procedure was going ahead and because of my platelet count they were going to do a standard, “plug”, biopsy, not use the transjugular route. (The standard route takes the needle directly into the liver and, when withdrawn, a plugging agent is introduced to block the puncture)

She went through what they were going to do during the procedure and what the various risks were. The main ones being bleeding from the puncture wound, damage to the biliary ducts and not getting sufficient of a sample therefore needing a further procedure at a later date. I signed the form and then changed into the gowns. Being an upper body procedure you only have to strip to the waist.

I said goodbye to my wife and she set off to visit the National Gallery and go shopping in Oxford Street. By now it was one of those cold, crisp winter days that makes London look even better.

I went into the preparation area to have a cannula inserted. Straight into the vein in one go. At 10:10 I was taken down to the theatre and lay on my back on a trolley with my arms over my head. Two doctors introduced themselves and proceeded to scan my liver area with an ultrasound probe. They discussed the best entry point and route for the needle. Once they were happy with where it was going one doctor took over and it was time to get the area ready for introducing the biopsy needle. The area was cleaned down and a sterile sheet stuck in position with an opening at the puncture site. Ready to start.

First, local anesthetic was injected around the area. The biopsy needle was then slowly introduced through the skin, guided by the ultrasound scan. There was one point which sent a short, sharp pain through my lower abdomen and that’s when the needle passed through the outer membrane of the liver. I was expecting the needle to go straight in, take a sample, and then quickly withdrawn but the process actually takes a lot longer as it is slowly guided into position. Every so often I was getting another sharp pain in my shoulder. I’ve learned not to “be brave”, and keep quiet, as the pain may indicate a problem. I told the doctor what was happening and she adjusted the needle position accordingly. I don’t know exactly how long the whole thing took, probably 50 minutes all up. It was quite a relief to hear the words “All finished”.

I was told to roll onto my right side as this applies pressure to the wound and helps it seal. I was wheeled back into the Recovery Room and the nurse explained that I had to stay on my side for 2 hours. After that I would be able to lie on my back and eat and drink but would need to spend a further two hours in Recovery before I could go home. I was wired up to a blood pressure/heart rate monitor and every few minutes one of the nurses would check to make sure everything was OK. I rang my wife to tell her what time I could be collected and then settled down for the two hour wait before eating.

Once the two hours were up I was allowed to roll onto my back and sit up. I was presented with an NHS Snack Box – sandwiches, crisps, yogurt, fruit juice and a chocolate biscuit. Never seen one of those before. I had some questions, mainly to do with what to look out for that would indicate if something was going wrong. The nurse patiently explained the potential signs of trouble and answered my more general questions.

The next two hours passed fairly quickly and just before 15:00 the doctor, who had carried out the procedure, came to see me to make sure everything was OK and sign me off. My wife had turned up so it was a quick change out of the gowns and we set off for the station. By 16:30 we were home and I had another test under my belt to add to my growing list.

I’m full of admiration for Interventional Radiology at St.Thomas’. Apart from the small hiccup at the start (which was nothing to do with them) everything ran very smoothly. The nurses were fantastic. Nothing was too much trouble. They kept me informed at every stage along the way and answered all my questions with patience and good humour. 10 out of 10. My last task will be to ring them in the morning to let them know if I’m OK.

I never got to the bottom of “we were expecting him in last night”. Will ask my lead consultant when I see him for the final planned test for 2012 – a colonoscopy next Thursday. An 8:30 start for that one but hopefully don’t need to be accompanied.

MRI SCAN
Monday 30th April 2012 – St.Thomas’ Hospital

I hadn’t had an MRI scan before so wasn’t sure what to expect. The main thing I’d been told was that some patients found the whole process claustrophobic. Because the scan was concentrating on the digestive system I wasn’t allowed to eat for the 8 hours prior to the test and was asked to arrive 1 hour early to drink a “special fluid”. This fluid looked very much like wallpaper paste but was lemon flavoured. There was a litre to drink and as I got closer to the bottom of the jug the consistency felt like wallpaper paste. Next time I have to drink MRI prep I’ll make sure I keep stirring it throughout. (….except the next time I had an MRI they had changed the prep solution to a disgusting tasting clear liquid called Mannitol)

When it had had time to move into my system I was taken into the scanner room. You’re confronted with a large, ring doughnut shaped bit of kit with a trolley that slides in and out. I was asked to lie face down on the trolley with my arms above my head. Not the most comfortable position when you’ve just drunk a litre of liquid. The radiographer explains what to expect and tells you that at various points within the test process you will be asked to hold your breath. Didn’t sound like a problem but you have to exhale first and that makes it a lot more difficult. You are given a set of headphones to wear as the machine is “quite noisy”. At least I didn’t get claustrophobia as I went into the tunnel feet first.

She wasn’t kidding about noisy. The best way I can describe it is being caught in the middle of a game of space invaders. The machine makes some very loud sounds and then, towards the end of the first test session, the table you are lying on starts to vibrate. A very strange feeling. The contrast dye is then introduced via a cannula and the whole test sequence repeated.

When the tests were completed and I was off of the table and another nurse asked me how I was getting home. I said by public transport. He replied that the litre of liquid that I had just drunk was specially formulated not to be absorbed by the body and that I might want to wait around a bit before catching a train. I then realised the significance of his comment but not being one to shy away a challenge, decided to jump on the train and see what happened.

I’m pleased to say that nothing happened, not even a hint of having to rush off to the loo. In fact the effect of the prep liquid was very short lived.

The results have to be interpreted by an MRI radiologist so there’s a three week wait before you get them.

SeHCAT SCAN
29th July 2014 – St.Thomas’ Hospital

A simple procedure for measuring bile acid malabsorption. It involved a trip to St.Thomas’ Nuclear Medecine Dept. to swallow a radioactive pill and then return three hours later for scans – 5mins lying on back and then repeat lying on front. Then a further visit, one week later, for follow-up scans. The system then compares the two and works out how much of the radio active tracer has remained in the system and from that the bile acid absorption.

UPPER GI ENDOSCOPY AND VARICEAL BANDING
3rd September 2012 – St.Thomas’ Hospital

Off to St.Thomas’ Hospital, this time for an endoscopy……at least that’s what I thought. Of all the tests I’ve had I find endoscopies the worst to deal with and would always choose to be sedated. The implication of sedation is not being able to drive for 24 hours afterwards and I really needed the car the next day so I took the decision before I went in that I would only have the throat numbing spray and nothing else.

I had assumed that the doctor would just be having a look down my upper GI tract to see what state my varices were in. Wrong! She explained that the intention was to have a look down there and then, if necessary, treat the varices by banding, and for this I would need to be sedated. I would also need to have the whole procedure repeated in another three weeks and then again in a further three weeks.

She went through the risks associated with the procedure and got me to sign the consent form. I then had a cannula inserted in the back of my hand and I was ready for the procedure. After a few minutes I was wheeled into the testing room, connected to a blood pressure monitor and an oxygen supply. Then it was the xylocaine (burnt banana flavoured) spray that numbs the back of your throat, and finally a sort of gag is placed between you teeth and this helps to guide the endoscope. It’s the gag that I really don’t like so I was pleased that the doctor injected the sedative straight away with the words “you’re going to feel a little drowsy”.

Next thing I knew I was lying in Recovery. When I had woken up sufficiently I was given a copy of the endoscopy report that would be sent to my GP. The doctor had found three large varices with high risk stigmata and had applied 6 bands to them. The nurse told me that I must only have liquids for the next 24 hours and then three days of “sloppy” food. Now maybe it’s a man thing, but the sandwiches I had brought with me looked very appetising, so I waited a while and then tucked in, ignoring the nurse’s advice. Maybe stupidity is a better description because it did hurt swallowing and I knew not to do it again.

When we got back from London I did the second stupid thing – got in the car and drove home from the station. It was only afterwards that I read the leaflet I had been given at the hospital that pointed out that my insurance would be invalid during the 24 hours following sedation. I wouldn’t do that again either.

That evening I was in quite a lot of discomfort and took a couple of doses of Paracetamol. It was certainly a lot more painful than before but I noticed that the report for this session actually says “May experience some mild chest discomfort” so I’ll grin and bear it.

When I wrote up yesterday’s events for my blog I found that each time I thought about the burnt banana spray and the mouth gag I’m getting a slightly sick feeling in my stomach and at the back of my throat. I needed to address the issues there and then that I would be over it in time for the next banding. I surprise myself how laid back I am about hospitals, procedures and appointments so I don’t want to spoil that for the next one.