Tag Archives: Crohn’s Disease

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.

Flushed with Infusiasm

At the end of my last post I had made the decision to start Vedolizumab (Entyvio) and was on the point of contacting the IBD Helpline at Guy’s and St.Thomas’. I dropped them an email, which is how contact is made nowadays.

The next day I had a call from the hospital to arrange my first infusion. “Vedo days” are Wednesdays and Fridays. As luck would have it I already had a haematology appointment arranged for 10:30am on Wednesday 29th May so the infusion was booked for an hour later (on the basis that haemo clinics usually run on time). A new chapter in my “Crohn’s career” was about to be written.

The last infusion I had was at the end of 2009 (Infliximab) and that took several hours to complete so I was intrigued to know if Vedo would be the same. I canvassed the opinion of some other “infusees” and the concensus was that, due to extra monitoring, I should allow about 4 hours for the procedure. Forewarned is forearmed.

Wednesday 29th May 2019 – Guy’s Hospital – IBD Infusion Unit

In the interim the haematology appointment had been cancelled due to the consultant being away. I took advantage of the free time to have a walk along the Thames, one of my favourite pastimes, and then a quick visit into Tate Modern to use their “facilities” (recommended).

View from Blackfriars Bridge
Cruise Liner tied up alongside HMS Belfast

I arrived at the Unit with a couple of minutes to spare and handed in my calprotectin sample.  I was asked to settle myself down in one of the infusion chairs. A nurse came over to introduce himself and ask me a few questions before starting the infusion. The standard ones : what medications are you on; are you allergic to anything, how are you feeling? etc. He warned me that I might feel more fatigued than usual afterwards.

The nurse explained that he worked for Takeda, the company that manufactures Vedo, but was seconded to the NHS. I asked how long the procedure would take and was surprised when he replied “30 minutes Vedo followed by a 30 minute saline flush. 60 minutes in all”.

Cannula inserted; Vedo connected; and I settled down to read a book about heart surgery (“Fragile Lives” – Prof.Stephen Westaby). I know as Crohn’s patients we all go through some fairly challenging experiences and witness some gory sights when in hospital but even I found myself squirming at some of the Professor’s descriptions. Luckily there are no photographs!

Vedo finished, flush attached, back to the book and what seemed like a few minutes later the whole procedure was over. I was offered coffee and biscuits and then I was on my way home. My next infusion is set for 12th June., immediately after a rebooked haematology appointment.

Wednesday 12th June 2019 – Guy’s Hospital – IBD Infusion Unit

Time for my second infusion, but first there was a Haematology appointment to get out the way and with it a blood test. That meant I already had one hole in my arm and now I needed another! Once I had answered the standard set of questions that you have before any infusion the nurse inserted another cannula and I settled down with a book for the half hour infusion and then a further half hour flush. The only difference with my previous visit is that there were no coffee or biscuits on offer!

View from the atrium at Guy’s Hospital

I had been hoping that the calprotectin result for the sample I took in on 29th May was available but unfortunately it takes more than 2 weeks for samples to be processed. (I wonder how the home testing kits can give a result so quickly?)

Next infusions booked for 12th July and 9th August.

Never one to waste a visit to London I spent the afternoon at the Royal Academy Summer Exhibition. Not a classic year in my opinion.

Royal Academy – Summer Exhibition 2019

Is the Vedolizumab Working?

How do I feel? Maybe a little more fatigued but no great difference. Is it working? It’s far too soon to know after just one dose but how will I know if it is working anyway? A little explanation –

The lead up to being prescribed Vedo is described in previous posts but maybe I should do a brief recap. My calprotectin level started showing an upward trend towards the end of 2015. Subsequent colonoscopies and small bowel MRI scans showed nothing that would account for this so the issue was parked as a “mystery’”. During that period I’ve been feeling fine. In fact I’ve been OK since my reversal, in 2011, and not taking any Crohn’s drugs.

Calprotectin Test Values

It wasn’t until a gastro appointment in October 2018 that I suggested we should do some further investigation as my calprotectin level had reached 1300. A capsule endoscopy had been mentioned in the past as it would get a good look at the whole of my digestive tract. My consultant agreed it was time to give it a go and one month later I was strapping on the recording unit and swallowing the capsule.

I did not get an official copy of the results until March 2019 but already had an indication, from a conversation with the Head of Department, that it showed mild to moderate inflammation in my small bowel. When I saw my consultant again we discussed starting Vedo . He had already obtained the budget to cover it (approx. £1,000/dose). How would we know if it was working?

If I had been suffering flare-ups then judging its effectiveness would be simple but as I am not feeling any physical symptoms the only monitoring will be regular calprotectin samples. I forgot to ask how often constitutes “regular”. At the end of the first year I will have another capsule endoscopy and an MRI scan.

Viva la Vedo

Monday 15th April 2019 – Guy’s Hospital – Gastroenterology

The Vedolizumab Decision

(This post records an important discussion prior to the next stage of my Crohn’s treatment)

The gastro clinic at GSTT is a victim of its own success. Once a patient gets referred there they invariably don’t want to return to their original hospital. As a result clinics run late. I guess they must be overbooked to cope with the numbers. But forewarned is forearmed so I always take something to read. Having registered with reception I settled down with my book. A nurse appeared and apologised that the doctors were running 75 minutes late. I wondered if there would be time to go and get a chest x-ray (booked some while ago). It was worth a try. Ten minutes later I was back in the outpatients’ waiting area with the x-ray complete. Excellent service.

When you get called into the “inner” waiting room you know it won’t be too long until you see the consultant. I asked the nurse to put a note on my folder that I wished to see my usual doctor. After a few minutes he was calling my name. As I entered the consulting room I had a list of questions in my hand as an aide-memoire.

Capsule Endoscopy Report

He asked if I had received a copy of the capsule endoscopy report. Yes, but didn’t know what I was looking at. He worked his way through the document stopping at any frames of interest – “that looks like an ulcer, and there, and that’s one…..” – the conclusion was mild to moderate inflammation in my small bowel. I asked whether it was possible to work out location of inflammation as I get a pain across my midriff,  just above my belly button. He did not expect that to be where pain would be apparent. I mentioned it seemed worse when wearing a tight belt and explained about the hernia that had been found a couple of weeks previously and how it hurt more since surgeon had “poked around”. Normally a hernia would be put right in a simple operation but due to varices growing in my abdomen the surgeon was not happy to proceed. I had added it to my “on-hold” list – cholecystectomy; hernia repair.

Next he ran down the results of my recent blood test. “You’ve had chickenpox but not glandular fever as no antibodies are present, oh and you haven’t got AIDS but you probably knew that”. I replied that I had a very bad bout of glandular fever at the beginning of my ‘A’ levels, which accounted for why I did so badly. Maybe antibodies disappear over time. I was pleased to see that my Hb had now risen to 11.8. There was another test, looking at protein bands, one of which was marked “insufficient sample provided” which I thought strange as the phlebotomist had taken nine, full to the top, phials last time. I would need need to give a further sample after the appointment.

I outlined my reticence about starting Vedo :

  • Having been Crohn’s drug free for nearly 8 years I was hesitant to re-start
  • Side effects
  • Co-morbidities
  • Infusions. Whilst I like trips to London (at the moment) I might not do so as I get even older

What could happen if I decided not to start Crohn’s drugs? The worst outcome would be the inflammation becoming so advanced that the bowel could perforate or form fistulas and result in emergency surgery. Given that I should try to avoid surgery this sounded like a risk not worth taking.

The side effect profile of Vedo is very good and it is proving very successful. A recent study into its use with Ulcerative Colitis showed better results than expected. I said that I had seen some slides from that presentation as a member of the audience had posted them on Twitter. He seemed a little surprised at this but added “I do talk a lot!

Is Vedo compatible with my co-morbidities – bile acid malabsorption; portal hypertension; thrombocytopenia; gallbladder issues? I do have rather a lot of them. He told me not to be concerned about them and that I must be made of stern stuff as there were many patients at my age who were in a considerably worse state!

With regards to travelling for infusions, a self administered version of Vedo, using compressed air rather than a needle, has been developed and will undergo 2 years of trials. It should be available in 3 years time then no more infusions.

I asked in light of the calprotectin tests, suggesting the inflammation started early in 2016,  if I should have had a capsule endoscopy sooner than October 2018 ”  His response was that the first place to look following raised calprotectin results is lthe arge bowel. My colonoscopies showed nothing. The subsequent small bowel MRI also showed no inflammation. However given my experience he was now favouring earlier intervention with a capsule for other patients.

How would we measure the efficacy of the drug? Regular calprotectin tests throughout the year and at the end of the first twelve months a capsule endoscopy and small bowel MRI. The one thing I didn’t clarify is whether Vedo is taken to get one into remission and then continues as a maintenance dose or if another drug is then substituted.

I said that I wanted to discuss the situation with my wife before making a final decision but was leaving the consultation with a lot more positive thoughts about Vedo than when we started. How would I give the go ahead? “Contact the IBD Helpline and take it form there“. With that we shook hands,  I bade him farewell and headed for the blood test room.

Having weighed up the pros and the cons, and with the additional imperative of avoiding surgery (if at all possible) it would seem to be a no-brainer that I should at least try Vedo to get me back into remission before serious damage is done to my gut.

Now where’s that IBD Helpline number……

 

Pendulum

When I was younger, so much younger than today I never….

….wanted to go anywhere near a hospital. It was my biggest fear. Some of my schoolmates had already been incarcerated to have tonsils or an appendix removed. I don’t know what scared me specifically. Was it the thought of surgery? Was it an enforced stay away from the comforts of home and family? Was it thoughts of my own mortality? My fears turned into reality, in my early twenties, when I found myself in an ambulance, sirens blaring, heading for Croydon General Hospital with suspected appendicitis.

As it turned out it was more sinister than that – a perforated bowel that had leaked into my abdominal cavity and peritonitis had set in. (More of this later) When I left hospital after 3 weeks, most of which were spent on a “liquids only” regime, I had not suffered any particularly traumatic experiences but it had not lessened my fears.

I had been told that this first Crohn’s surgery was unlikely to be the last. In the ensuing years I still considered the knife to be the “last resort”(and, to be fair, so did my consultants). It was the “backstop” (to use a popular word) once all viable medication had been exhausted. In 2010 I was faced with surgery again having tried all the possible drug treatments. Thirty years between operations? Not bad. Three times longer than anticipated. Following the successful removal of a terminal ileum stricture, temporary ileostomy and subsequent reversal, I revisited my thoughts. If I had chosen elective surgery years earlier would my QOL have been better, sooner? The pendulum had now swung the other way and I started to advocate that surgery should not be considered a “last resort” or an indication that all other treatment had failed. It should be seen as an alternative to drug based treatment. It’s an area which various learned bodies are researching.

Then in January 2017 I turned yellow (jaundice). I was sent to see an upper GI surgeon (at my local hospital) who explained that the solution would be to remove my gallbladder. A relatively simple procedure, carried out laparoscopically. When he examined me he happened to notice the large, laparotomy scar stretching up my midline. He asked me to go through my medical history. At the end of my story, which included Crohn’s, portal vein thrombosis (probably due to the peritonitis), enlarged spleen and varices, he concluded I should be referred to a specialist liver unit as the operation would require specialist facilities.

A few weeks later I went to see another upper GI surgeon, this time at Kings. His registrar had started to go through the standard, pre-surgery checklist when I produced a drawing showing the route that my health had taken so far. She metaphorically gulped and went off to find the lead surgeon. He expressed his concern about carrying out surgery and after a lengthy discussion we concluded it would be best to leave well alone and only operate if it became absolutely necessary.

At my request I saw him again a couple of weeks ago as I had noticed a pain in my right hand side and wondered if it was a portent for needing his expertise with a scalpel. He prodded and poked the offending spot and announced that I had a post-operative hernia at the site of my former stoma. Again this would usually be a simple day operation but given my history it was another one to add to the “do nothing unless absolutely necessary” list. It dawned on me that the pendulum had now swung back to its original position. Due to circumstances, in my case, surgery really should be considered as a last resort.

In the meantime the long running “why is my calprotectin so high” question had been resolved. A capsule endoscopy in November 2018 showed that inflammation in my small bowel has returned. I have a meeting with my gastroenterologist next Monday to discuss starting Vedolizumab. I was minded to suggest holding off for the time being but that may not be a sensible position to take as I really do need to avoid surgery for as long as possible. Should be an interesting discussion.

Fantastic Voyage

Fantastic Voyage – 1966 Sci-Fi Film

A New One On Me

Over the years I have undergone many different tests but the one that had eluded me to date was the Capsule Endoscopy. Maybe that’s the wrong to put it. Might be better to say that “so far I hadn’t needed one”.

So what changed? The last time I saw my gastro we discussed the apparent conflict between my feeling fit and well (good QOL), clear colonoscopies & biopsies but test results suggesting the opposite – calprotectin = 1300 ; Hb = 11.0 ; gradual weightloss >15kg. We had discussed this before. He had even asked a colleague to carry out a second colonoscopy in case he had missed something. Both of them were stumped so we agreed to park it. I thought now was the time to ask for it to be investigated further. The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and the point where my large and small intestines had been rejoined. He agreed.

We had previously discussed using a self-propelling endoscope but a “pill cam” sounded a less daunting solution. The concern about using a capsule was the risk of it becoming stuck at a narrowing. A radiologist would be asked to review my last MRI scan for strictures before the endoscopy was ordered. The cost of the capsule endoscopy procedure to the NHS is approx. £500.

All must have been well as I got a call from Endoscopy Appointments to agree a suitable date  for the procedure. A couple of days later the instructions arrived in the post. Very similar to having a colonoscopy but with none of the dreaded prep solution needed. The leaflet also listed the medications that would have to be put on hold. These included stopping iron tablets and Loperamide 7 days out. Iron tablets – no problem, but Loperamide – that would be the one instruction I wouldn’t be following. The thought of taking a trip to London having not taken Loperamide for 7 days was not even worth considering and would have put in jeopardy attending the Big Bowel Event at the Barbican on 16th November.

Monday 19th November 2018 – GSTT Endoscopy Department

After the glorious weather over the weekend it was a disappointment to arrive in London on a dull, rainy day.  The walk to the hospital took me past a number of foodstalls that simply reminded me that I hadn’t eaten since 8:30 the previous morning or drunk anything since 22:00.

Food Stall
One of the food stalls that have sprung up along the South Bank

I arrived at St.Thomas’ Hospital and, after a few minutes’ wait, was collected by the specialist nurse. She asked the usual questions :

“When did you last eat?” “8:30 yesterday”

“When did you stop taking iron tablets?” “7 days ago. Why is it so far in advance?” “They blacken the walls of the intestine and can give patients constipation”

I explained that I hadn’t stopped taking Loperamide as, for someone who relies on it every day, any thought of stopping for 7 days was a definite non-starter.

“What other medications are you on”  I went through the list

She outlined the procedure and I was able to ask the questions. The main one was “can the capsule be used to judge the condition of esophageal varices? If it can then should I cancel my conventional Upper GI endoscopy booked for the week before Christmas?”.  She explained that a capsule can be used to look at varices but it would need to be a different type from the one I would be swallowing today.

She then ran through the risks of the procedure. The main one being the capsule becoming stuck and the possible means required to extract it, the worst scenario being surgery. I signed the consent form.

There are several different makes of capsule system available which all work on similar principles. There are also different types of capsule for specific tasks. There is even one with a camera at both ends.

The more advanced ones have higher resolutions & frame rates and some communicate with the recorder unit wirelessly, without the need for sensors. St.Thomas’ employ the MiroCam system which  uses an array of sensors to pick up the signal from the capsule and send it to the recorder. (It’s the same unit that the BBC used for the live endoscopy that they broadcast as part of their “Guts: The Strange and Mysterious World of the Human Stomach” in 2012.)

MiroCam receiver and sensor array

The first task was to attach the numbered sensors in the correct positions around the abdomen. I can see why wireless communication is the future. (I wouldn’t normally post a selfie of my abdomen, in the interests of good taste, but to illustrate…..)

It’s not until you see a photo of your abdomen you realise the marks that have been left by surgery, laparoscopic not keyhole

Once they were in position the nurse produced the capsule and asked me to hold it between my fingers then pass it in front of the recorder unit. A bleep showed that they were now paired. As she had already input my information into the unit the display showed my name, hospital number etc.

The capsule – measuring 25mm long x 11mm dia.

It was time to see how easy swallowing a capsule would be. The answer – very easy. At 11:40 I took one gulp of water and it was on its way. The nurse switched on the live monitoring function and we watched it enter my stomach. To save battery power she then switched it off and I didn’t have the courage to try it myself in case I ruined the whole procedure. (…and what if I had seen something that, to my eyes, looked wrong? A surefire way of inducing stress)

As the unit has a 12 hour battery life she said the unit would switch off at 23:40 and I could then remove the sensors. The recorder unit would then need to be returned to St.Thomas’. I explained I was not available the following day so we agreed that I would take it back on Wednesday. Two weeks later the results should be available. When would I be able to eat and drink again? Coffee two hours after swallowing the camera and then a light meal after another two hours.

If it had been decent weather I would have set off on a long walk around London, as light exercise helps the transit of the capsule, but I decided I would rather get home in the warm. I took a short walk to College Green (the area outside the front of the Houses of Parliament) to see if there was a media scrum due to some new development with Brexit but there wasn’t so jumped on the Tube to Blackfriars and took the train home.

From Platform 1 at Blackfriars there’s a good view of the City and the new buildings going up

True to the nurse’s word the unit switched itself off at precisely 12 hours from the start of the procedure and I was able to peel off the sensors with remarkably little pain. The camera is not retrieved after the procedure (although there are some types that do rely on the patient “collecting” it and returning it  to the hospital for analysis).

Wearing the receiver unit took me back to having a stoma as it was hanging in the same position as the bag and the adhesive on the sensors gave a similar sensation to that of the stoma backplate.

Partial Update

The analysis of the video was due to take 2 weeks from handing the recorder unit back but nothing was forthcoming. I contacted my gastro consultant who said he would chase it up but after 4 weeks still nothing. I knew I would be visiting the Endoscopy Dept. again on 18th December, for my annual Upper GI scope (looking for esophageal varices related to portal vein thrombosis)  so I would ask then.

The endoscopy was being carried out by the head of the Gastro Dept. so I asked him whether he could find my video results on the system. He went off to check the status. By the time he returned I had been prepared for the scope – xylocaine spray (burnt bananas) to back of throat; mouthguard in position; Fentanyl injected. I was unable to speak. Luckily they had held off with the Midazolam so I was, at least, still conscious!

He told me that the video was being checked now but he had seen the first half of it and appeared to show Crohn’s in my small intestine. A nice Christmas present! I would have to await the full analysis before discussing the way forward. I emailed my gastro consultant to tell him the news. He replied that he would keep an eye out for the report.

…and with that the Midazolam was injected….zzzzz

When Will It Be Resolved?

The report took a long time to finally emerge and in another email my gastro said that it did indeed show that Crohn’s had re-surfaced in my small bowel in the form of mild to moderate inflammation. This was a disappointment as I had been in remission since 2011. An appointment has been arranged for 15th April to discuss the treatment options. If feasible I would favour the “do nothing” option. My thoughts on the end of remission and the questions I have for my gastro are in a separate post (opens in a new window) – http://www.wrestlingtheoctopus.com/call-my-bluff/

The Report Finally Arrives

In mid-March a printed copy of the endoscopy report, in glorious living colour, arrived in the post. Whilst I found it fascinating I struggled to understand exactly what the images were showing.

I was intrigued by the transit times : 15 minutes to make it through the stomach; 2 hours 52 minutes travelling through the small bowel; and 8 hours 51 minutes in the colon. These were classed as being “within average range”.

Luckily there was a summary report; unluckily there it was in black and white “…with a background of Crohn’s these are in keeping with mild to moderate active disease“.

Capsule Endoscopy Report – from esophagus to ileo-caecal valve

A Patient’s Dilemma(s)

When 10th October 2018 arrived I had reached the 8th anniversary of my ileostomy. When I left hospital I had learnt two things about potential future surgery – the average time between operations for Crohn’s patients is 10 years; recovery time is improved by the fitness and weight of the patient but increases with age. Based on these two principles I set myself  the target of boosting my exercise and reducing my weight to around 80kg so that should I need to go under the knife again then I was in the best possible state for a speedy recovery.

Having taken the decision to retire early the exercise is mainly physical work around the garden, mucking out stables and taking long walks photographing London (when the opportunity arises). I’ve been achieving my targets and feeling “very well”. There have been a few “blips” along the way but these would come under the heading of EIMs (Extra Intestinal Manifestations – see previous posts). I’ll stick with “very well” from a Crohn’s point of view.

…and then a few weeks ago the unplanned visits to the bathroom started again. They had been happening sporadically over the 8 years, lasting a day or so on each occasion. so at first I wasn’t concerned about the latest occurrence but when it  reached the third day, without any improvement, it was time to take action. I emailed my gastro consultant to ask his advice. “Ask your GP surgery if they can carry out stool cultures to look for possible infections and C diff” was the reply. Yes, my surgery could do the necessary tests upon receipt of a fax!!! from St.Thomas’. (A fax? How last century. What’s wrong with an email?)

I went and saw a GP who suggested increasing the Loperamide to the maximum I’m prescribed – 12 daily. After a further couple of days everything returned to normal. When I went to collect the test results they were negative so, as usual, nothing to explain the problem. However one of the GP’s receptionists commented that she hadn’t seen me for a while and thought I didn’t look well. She suggested I should see a GP again. There was a slot that afternoon and after discussing my case  I suggested that a blood test might be a good idea (having not had one for over a year).

When the results came back there were no real surprises except for my Hb which was 112. When I checked my previous results I had been around this level for 2 years. To me it seems low and the Ferrous Fumarate I have been taking for many years has had no effect. (Is it not supposed to be a short erm measure to correct an imbalance?`) I had mentioned it before to both my consultants and GP and it did not seem to cause them any great concern.

Call it serendipity but I just happened to see a conversation on Twitter between an eminent Professor (who specialises in iron deficiency) and one of the BBC health programme presenters that tend to dumb down health issues for the masses. His point was that simply taking iron supplements was not the solution to the deficiency. I joined the conversation and mentioned my particular issues. I got a prompt and unequivocal reply – “You, sir, need treatment”.

…and so to my dilemma(s). How much store can be put in my feeling well and being able to carry out any activities I wish to undertake? Do I really want to undergo another range of tests in an attempt to explain, for instance, my calprotectin level of 1300? I’ve already been through  multiple colonoscopies, biopsies and scans – all showing no evidence of the Crohn’s having restarted. Is “do nothing” a viable option or would such a “pathway” not even be contemplated in some institutions? Do I want to start taking a new drug treatment for my Crohn’s just in case it is becoming active? The standard treatment would have been a maintenance dose of Azathioprine but that has already attacked my bone marrow and caused my platelets to plummet. The most likely choice would now be one of the biologics with the possibility of going through a long trial and error process until the right one is found.

…and my final dilemma is how to broach the subject of opinions I have read on Twitter, not even some medical web page, without giving the impression that I do not trust my present treatment.

Elective or Emergency?

I’ve often mentioned that I find blogging a great way of keeping objective about the various medical issues I encounter, hence this post which is a prelude to a meeting with a new Upper GI surgeon in London next Friday.

Why?

At the end of January I had a bout of jaundice. Whilst I turned yellow there was never any of the pain that usually accompanies it. I was in two minds whether to go to our local A&E but eventually gave in and made my way down there. To cut a long story short, a few weeks later I had a follow-up appointment with Upper GI consultant who suggested cholecystectomy (gallbladder removal). He was, however, concerned about some possible complications and for this reason recommended the surgery be carried out in a hospital with a specialist liver unit.

I exercised my patient’s right to choose which NHS hospital to be referred to and in my case the choice was simple – Kings College Hospital. I asked around and was given the name of an Upper GI surgeon who is highly recommended and has the added bonus of also working at St.Thomas’ and therefore access to my notes.

(There was a similar situation in 2009 when I found out I needed an ileostomy. The colorectal surgeon did not consider East Surrey Hospital had the facilities to cope with recovery from such a complex operation and so was sent to St.Thomas’ . I moved my outpatient care there in 2011.)

Preparing to meet the surgeon for the first time

The appointmet is set for 9:00am next Friday (22nd September). Before then I need to have a list of questions and any relevant documents. I am expecting to meet the named surgeon.

Just to complicate matters I will be seeing Haematology at Guy’s Hospital on the preceeding Wednesday. Will my medical file make it back to St.Thomas’ for Friday?

I have printed out the relevant documents from East Surrey Hospital- 2 x ultrasound reports + 2 x follow-up letters + last blood test results.

I’ve also included my “jigsaw” diagram which shows the various conditions we need to consider and the dates they were diagnosed or last tested – Crohn’s, PVT. BAM, thrombocytopenia, potential PSC + last blood test showed borderline thyroid.

What Shall We Talk About?

Reason for referral – the consultant at East Surrey was concerned that, in my case, cholecystectomy ran the risk of liver damage due to cirrhosis. He also noted my low platelet count and thought that keyhole surgery may not be feasible due to the scarring/adhesions from two previous laparotomies.

Latest test results – Fibroscan (testing for liver cirrhosis) – 2012 was 7.2; currently 7.8. Platelets – 96 (but have been as low as 56). Ultrasound scan showed one large gallstone but made up from many small ones. Weight – 78kg

Risks and Benefits of Surgery

Type of surgery – Keyhole or laparotomy? What factors will decide

Timescales – waiting time for operation; how long for surgery and recovery for either keyhole or laparotomy

Likelihood of liver damage?

WIll bile acid malabsorption become worse if gallbladder removed? (SeHCAT in 2015 showed severe BAM. I keep it under control with just Loperamide but have Colesevelam ready should it be required).

Likelihood of post-operative ileus? After two previous operations I experienced it badly?

Do I need to have reached a particular weight prior to surgery? (Prior to my ileostomy I was given 3 x Fortisip/day to reach a target weight of 85kg)

My Preferred Way Forward

To have surgery when it becomes necessary not as pre-emptive measure. “Emergency rather than elective”. Maybe that’s over dramatic and should read “Just-in-time rather than elective?” What are the risks of this approach? What signs will indicate that an operation is needed? How soon does action need to be taken once the signs appear?

The consultant at East Surrey Hospital said if I get jaundice again I should go to their A&E and then they will decide whether to  transport me to London by ambulance.

Anything Else?

Next upper GI endoscopy/variceal banding due December 2017

Bloating – have been like this since ileostomy/reversal. Any thoughts on likely cause? One or more of the 5 F’s?

…..should be an interesting meeting

It’s World IBD Day, again

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

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

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

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

 

Fifty Shades of Grey

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

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

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

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

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

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

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

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

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

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

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

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

50 Shades of Grey

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

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

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

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

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

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

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

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

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

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

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

 

In Case of Emergency

A few months back I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was the triage nurse who asked me lots of questions about health conditions, history  and medications. When we had finished running through the various ailments she complimented me on my knowledge but it struck me that it would have been a different story if I had been admitted unconscious or in a confused state.

Next I saw an A&E Registrar. What would he have concluded if I had been unable to fill in the details? He would have been confronted with a patient with a large scar up the midline and an appendectomy incision. He wouldn’t have been aware why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that I had Crohn’s disease, that there were additional veins growing in my esophagus (varices), that my spleen was enarged or that my platelets would show up around 60, rather than 150+. Valuable time could have been lost trying to solve the wrong problems.

What actually happened it that I handed him a copy of a chart I had drawn up showing the key events in my medical history over the last 7 years. The doctor thanked me and used it as the basis for the questions he then asked.  He then added it to my medical notes. Here’s the diagram :

In the ideal world the NHS would have a comprehensive medical record for each patient, held on a central system, that could be accessed by any doctor when required. A patient’s unique identifier, probably their NHS number, could be used as the reference code. The NHS tried to implement such as system (NpFIT). It didn’t work and there’s a link to the 2014 Report at the bottom of this post.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on or contained within them. Then there are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these all appear to be based in the US.  What I wanted was a standalone device that would be easily wearable and accessible. A bracelet with built-in USB memory seemed to be the ideal solution. The next challenge would be how to record the information.

I searched to see if there was a proposed standard data set for NHS use but could find nothing that displayed more than the most basic data. Certainly nothing that was suitable for a patient with long term, multiple conditions. There was nothing for it but to produce my own format. I settled upon two documents – i) a simple, overall summary plus ii) a very detailed table that recorded each appointment/follow-up letter; each procedure undergone and associated report; and any other relevant items such as emails.

Key Medical Details (with links)

I had already obtained hard copies of all the medical records from the three health authorities I have been treated under and had started the task of entering the relevant sections onto a computer. The thought of entering 40 years worth of notes from scratch would have been just too daunting.

The detail (geeky) bit : initially the bulk of the data was put into a spreadsheet (Excel) using a combination of a simple scanner and text recognition software. As the task neared completion it made sense to convert from Excel to Word as this would allow me to save the document as an html file that could be read by any web browser. The external documents (reports, emails) were scanned or saved as either jpg or pdf files and then linked back to the main document.

Detailed Medical Record

Job done. I can now wear all the relevant my medical details on a simple, universally accessible wristband, rather like a tortoise carrying everything with them wherever they go.

USB Bracelet

There are issues that I haven’t addressed :

Privacy – I don’t have any issues with allowing access to my medical records confidential (if I did I wouldn’t write a blog) but I can understand that some patients would want some type of password or lock on the files.

Security – does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc?

Since originally publishing this post a fellow patient suggested using a QR code to link to a remotely held copy of relevant medical details. The QR could be engraved on a pendant or bracelet but would it be obvious to medical staff how to use it? How about a QR tattoo in a prominent position? More thinking to be done…..

The 2014 Report on NpFIT failure :

*NpFIT – this proposal has been around for several years but proved impossible to implement. The link below will take you to the report outlining why the £6billion project failed.”

https://www.cl.cam.ac.uk/~rja14/Papers/npfit-mpp-2014-case-history.pdf