Category Archives: St.Thomas’ Hospital

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.

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

…and another thing

A chance to combine the World Cup, gardening, Crohn’s Disease and colorectal surgery all in one post or maybe just a chance to do some navel gazing.

With the World Cup upon us once more my memory has been drifting back to when it was held in South Africa eight years ago and the situation I found myself in at the time.. A couple of posts ago I wrote about things I don’t/didn’t know about IBD and my unsated curiosity.  Here’s some other things that I’m curious about, bear with me.

In 2010 I knew I was heading for surgery. The pain in my abdomen/back was stopping me from getting a good night’s sleep. In May my consultant told me to expect  to go under the knife within 4 weeks at our local hospital. Preparations to get my life in order went into overdrive only to come to an abrupt halt when my wife and I were invited to attend an impromtu MDM with my consultant, his boss and their colorectal surgeon. The upshot was that the operation, or more specifically the recovery, was too complex for them to contemplate. They were referring me to St.Thomas’ in Westminster. You can imagine it was a bit of a bombshell.

A meeting with the surgeon at St.Thomas’ resulted in the date for the operation being set for the second week in October. (It couldn’t be September as he always went on holiday for the month!)

Strangely I started to feel a lot better and the pain improved greatly. I decided that one of the projects that had been on hold could go ahead – the construction of a pergola. It may not  sound very exciting  but it was quite a challenging piece of work, especially for someone about to undergo surgery.

Having designed the structure, ordered and collected the timber I spent many happy days and evenings digging the holes, cutting the joints and assembling the structure. It helped take my mind off the forthcoming operation. Although it was physical work it was also relaxing and, of course, tiring. Getting to sleep was not a problem.

A few days after starting….

The finished job

My constant companion throughout that period was the World Cup on the radio so when I heard the opening match between Russia and Saudi Arabia today (14th June) I was  immediately transported back to that hot summer, balmy evenings and re-ignited the questions…

In 2010 my guts were in a pretty bad way  – there were loops, fistulas and, probably most worryingly, my intestines had started to attach themselves to my back muscles (hence the back pain) and to vital organs.

One of the surgeons very kindly drew this diagram for me

The questions : If I was in such a bad way how did I manage to complete a physically demanding project. How much longer could I have continued without the “elective” surgery becoming “emergency” surgery. It was five months from when I had expected to have surgery to actually entering the operating theatre. It seems like a long time to wait.

I know I will never get an answer to my musings but once again curiosity is getting the better of me. I’ll just keep them on my lengthening list of “nice to knows“. Tune in next week for some more navel gazing (I’d like to commend the skill of the surgical team for still having a navel to gaze at.)

 

Gallbladder Surgery? It’s Not That Simple In Your Case

Friday 22nd September 2017 – St.Thomas’ Hospital

My second outpatient trip to London in a week and, unlike Wednesday, a beautiful clear morning without a cloud in the sky. I needed to be at St.Thomas’ by 9:00 to see a surgeon about having my gallbladder removed. It was an early start and my first waking thought was to wonder if eating a complete can of baked beans for dinner the night before had been such a good preparation for a journey on public transport. Hopefully a couple of extra Loperamide would do the trick.

It wasn’t until I parked my car near the station that I remembered where my mobile ‘phone was – on the dining room table. Was this going to be a liberating or frustrating experience? How was I going to let my wife know what the surgeon had said? How was I going to let my brunch companion know where and when we should meet? (At least I had my camera with me).

Having spent the train journey pondering this dilemma I arrived at St.Thomas’ outpatients’ department without having reviewed my list of questions or the copies of the ultrasound scans and follow-up letters I took with me. After a few minutes my name appeared on the laser display board and I made my way to the room indicated.

St.Thomas’ Hospital – opposite the Houses of Parliament

I had been expecting to meet the surgeon himself but was met by his registrar. I explained to her that I really wanted to see the surgeon and she said she would ensure I could spend a few minutes with him before I left. She started to go through my medical history. To speed up the process I produced a copy of the diagram I had drawn showing the key points in 40 years of Crohn’s and its companions. She was very impressed and no doubt I started beaming like a Cheshire cat. That soon stopped with the next set of questions.

40 Years of Medical History – on a page

I thought I was there to discuss whether surgery was a good idea, or not, and the possible complications. She was clearly running through the standard pre-operative assessment checklist – “Are you mobile? Can you wash and dress yourself? Can you manage household chores on your own?” I answered “Yes” to all the above but of course the answer to the last one was “No, I can’t. That’s why I got married”  (I’m joking!). I told her that my preferred option was no surgery until absolutely necessary as it would be too disruptive at present.

We then started to discuss my medical history in detail. She examined my abdomen and complimented me on the quality of my scars. At this point it was obvious that surgery wasn’t going to be simple. She went off to see if the surgeon was available, taking the diagram with her. I think they must have then discussed its contents as about 10 minutes later they both returned and the surgeon introduced himself. He also liked my diagram and quickly ran through the key points.

He asked me to describe the circumstances that led up to me being there. I recounted the incident of violent shivering and turning yellow that occured at the end of January. He asked if I felt any pain (everyone has asked that one) and I was able to say I felt nothing at all. From that he concluded that a small gallstone must have temporarily lodged in my bile duct, long enough to cause the symptoms, and then quickly passed through before the pain started.

I went through the discussions I had had at my local hospital (East Surrey) and their suggestion that I needed to be seen by a specialist liver unit. I wondered why one of their concerns was liver cirrhosis? He replied that whenever a patient appears with esophageal varices / portal hypertension / portal vein thrombosis then it would be assumed that liver cirrhosis was the most likely cause. My latest Fibroscan result was 7.8 suggesting that cirrhosis was at a low level. I explained the hepatologist’s theory that the PVT had been caused by peritonitis following perforated bowel surgery in 1979. He thought this was very feasible.

Usually gallbladder removal is a same day operation using keyhole surgery. In my case it would be a lot more complicated. He noted my wish to delay surgery for as long as possible and was minded to agree with me. He wanted to present my case to their departmental review meeting to get other opinions. In the meantime they would arrange for me to have an MRCP scan (magnetic resonance cholangiopancreatography), a targetted MRI scan that looks at the biliary and pancreatic ducts. This would determine if any other gallstones were lodged in the bile duct. He asked me to book a further appointment for 6 weeks time so we could discuss the results and the meeting’s conclusions.

I had some final questions :

Will a cholecystectomy make my bile acid malabsorption worse? “We simply don’t know”.

Am I likely to suffer from post operative ileus (lockdown)? “Possibly”.

If we leave surgery until it is absolutely necessary what could the consequences be? “Anything from pain to having to prepare one’s relatives for bad news”.

Timescales for elective surgery? “Surgery would be carried out in the specialist Liver Unit at Kings College Hospital so the timescales would depend on their waiting list”.

I left any further surgical questions for our next meeting. His final action was to introduce me to their senior nurse co-ordinator who acted as a single point of contact for their patients. If I had any questions or concerns then I should call or email him.

….and my ‘phone predicament? Don’t bother with BT public telephone boxes – they take your money and then don’t work. When I arrived at St.Thomas’ I explained my problem to a very helpful guy behind the Patient Transport desk who allowed me to use his extension to make the necessary calls after my appointment.

To read the follow-up post please click the link below :

Next appointment – Friday 10th November

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

Plan for the Worst, Hope for the Best

(In my experience this was not a typical colonoscopy. If you are about to undergo a similar procedure don’t let this post put you off. There is always the option of more sedation)

I said in a previous post that my last gastro appointment had been “interesting” but the offer of a colonoscopy “with an audience” would take that to the next level.

The last one was in July 2016 so why another one so soon?  I had also undergone an MRI scan and the results were very definitely at odds with the scope. There was also the little matter of the latest calprotectin test which showed a value of 896 (high). It was all pointing to my 6 years of drugs free remission coming to an end. I had resigned myself to restarting a drug regime and repeat surgery drawing closer.

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

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. 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. 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 gastroenterologists 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

I had started my journey (real journey so acceptable use of word) this morning expecting to be starting medications or at worst seeing surgery on the horizon. I was leaving for home with a much more positive outcome, hence the title of this post.

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.

Two days later I went to see my GP to arrange for a bile acid sequestrant to be prescribed to treat BAM. I arrived expecting to take away just a prescription and ended up being referred to a surgeon, but that’s for another time…..

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

 

 

 

Now or Later?

Are you a “Now” or “Later” person? When you’ve undergone some test or maybe an MRI scan do you prefer to get the result/report as soon as it is available or do you prefer to wait until you see your consultant?

I’m definitely the former. I like to know what could lie ahead so that I can come to terms with the worst scenario and then, if reality is actually not as bad, result!

When it’s something like a calprotectin test then it’s simple to compare the new value to previous ones and identify the trend. (I dropped a sample into the Path Lab for analysis just before Christmas and should be able to get the result soon).

The problem comes when you read a report that is well beyond one’s own limited medical knowledge or experience. I had such a report arrive in the post last week. The MRI scan itself was carried out at the end of last July but if you’ve read my previous couple of posts you’ll see that there was an apparent conflict between it and a subsequent colonoscopy. I had asked my consultant to send me through the text and he duly obliged.

Before we go any further here it is :

“MRI Small bowel study :

Comparison is made with the previous MR in April 2012. Previous ileocolic resection again noted.

There is stricturing seen in the proximal and distal sigmoid colon as before, with relative sparing ol the midsigmoid colon. As before there are adhesions between the rectosigmoid, proximal sigmoid and the dome of the bladder which is tented upwards and slightly thickened, suggestive of developing colocolonic and colovesical fistula formation. No intravesical gas is however seen at present. There is moderate prestenotic dilatation with the descending colon measuring 6.1 cm in diameter

As before a further stricture is seen in the proximal transverse colon measuring 10 cm in length, with slightly less mural thickening than before. Moderate prestenotic dilatation of 4.8 cm is seen. There is further stricture seen in the ascending colon over a length of 5 cm. Mild mural thickening and oedema is noted in the caecum and distal 5cm of the terminal ileum as previously.

The small bowel loops are suboptimally distended, with the impression of adhesions between the small bowel loops and anterior abdominal wall. No definite further strictures or active small bowel disease is seen. Mild splenomegaly is demonstrated at 15 cm as before There is a mild atrophy of the pancreas. Gallstones noted within a slightly thickened gallbladder as previously. Solid organs otherwise unremarkable.

No intra-abdominal collections. Small trace of fluid within the pelvis.

Conclusion: Appearances are similar to previously with stricturing seen within the colon, associated prestenotic dilatation, and evidence of penetrating disease as before.”

I mentioned this to another IBD patient to which they replied :

“This is exactly the reason why I don’t like getting copies of blood results or test reports as it always throws up questions that would not otherwise be there (particularly if you are feeling well). And it creates a feeling of unwelcome uncertainty when there is not a medical person to explain it….”

I can understand this reasoning and, having read the above I’m starting to think that maybe that’s the way forward.

There are four words in particular make me wonder what lies ahead – “stricture”, “fistula”, “adhesions” and “penetrating”. I’ve experienced them all before and it ended up with surgery. If I need further episodes under the knife then it’s not really a surprise. My consultant quotes the average time between surgeries for Crohn’s patients as 10 years. I’ve reached six and a half from the ileostomy, but before then (perforated bowel) it was 30 years.

Surgeon’s drawing of surgery – October 2010

Next time I see my consultant it should be an interesting conversation. How much of the report could have been expected given my past history? Are there any pointers to the progression/reawakening of Crohn’s disease? What next? Does it point to surgery sooner rather than later?

Once I have my latest calprotectin results back then I must get a date for that next appointment……

Until next time

 

Donald, no not THAT one

Do you have a “quotation that inspires you”? The one I would choose is probably not an obvious one for a health blog. You might have been expecting me to have trawled through the “inspirational” websites to find some relevant, life affirming words. I hope you’re not disappointed….

Here goes. Over to that well known US philosopher, Donald Rumsfeld. It’s the quote he was ridiculed for at the time, unfairly in my opinion, as it makes perfect sense. In case you don’t remember what he said :

“…as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns- the ones we don’t know we don’t know.”

Bear with me, it will become clear. To illustrate the point I’m using one of my favourite subjects – bile acid malabsorption (BAM). Maybe “favourite” isn’t the right description, make that “a subject I have felt the need to write about several times before”. There’s barely a day goes by when I don’t see a comment, on one of the IBD or BAM forums, from someone who has just been diagnosed with BAM and many times the post goes on to say that their doctor had never heard of the condition before. That’s the first hurdle to overcome.

Walk up to St.Thomas' from Waterloo
St.Thomas’ Hospital, Westminster

I am a fellow sufferer as a result of losing my terminal ileum. (I had an ileostomy back in October 2010). Before the operation I was offered the chance to take part in an Enhanced Recovery Scheme at one of the top London hospitals. Part of the ethos behind this regime is to fully inform the patient of what will happen at all stages of the process – pre-op, during the hospital stay and beyond. Was I told about BAM before the operation? I’d have to answer “maybe” and this brings us to the point of this post. Let me explain….

I was told that after the operation absorption of vitamins and salts would be much reduced due to lack of a terminal ileum. The surgeon repeated this message on his ward round post-op. If someone told you that your body wouldn’t absorb salts properly what would you take that to mean? I took it at face value, I would need to up my intake of salt (sodium chloride) to compensate and take supplemental vitamins. I didn’t see the need to question the statement as it seemed very clear.

It wasn’t until I was diagnosed with BAM (4 years after the ileostomy) that I found it has an alternative name “Bile SALT Malabsorption”. Suddenly the comment about not absorbing “salt” took on another meaning. You can see the problem.

This is where Donald Rumsfeld comes in. I heard what the Enhanced Recovery Nurse and the surgeon told me. I understood what the words meant – to me. I didn’t appreciate that I didn’t understand what the words meant to them. From their point of view – they were using their everyday, medical terms to describe a likely problem to a patient.

From this experience I have learnt that you must always question what you are being told and do your best to get the doctor, consultant or surgeon to explain, in simple terms or non-medical terms, exactly what they mean and what they perceive the implications to be.

I keep coming back to those particular words in the quote “there are things we don’t know we don’t know.” Try repeating them to yourself as you enter the consulting room…..

#HAWMC – Day 20 – Highlight

day_20If I’d written this three months ago I would have either used a slightly nebulous highlight – “managing my health, work and lifestyle so that they work in harmony” (most of the time) or I might have said “writing a book”.

However, in September, I had a new experience because of Crohn’s/IBD. (What follows is a slightly edited post from just after that event)

“Whatever else you can say about Crohn’s Disease it certainly does give you the chance of new experiences, mostly unpleasant, to be honest. I won’t list the nasty ones here as they are covered in the video at the end of this post.

A fellow IBD patient, or should that be sufferer, had been asked to to give a talk about “Living with IBD” to some nurses. Unfortunately she was double booked and asked if I would step in. With typical male arrogance and over confidenece I immediately agreed. The date was set for 5 weeks time.

It was actually something I’d wanted to do for a while. I suppose it reawoke the “performing” instinct that first showed itself when I was  in a band. That was around the time I was diagnosed with Crohn’s.

mav_lak_2
That’s me on the left – The Lakers, Redhill

GETTING READY

I wouldn’t need any preparation. I’d lived with IBD long enough to write a book (literally). I would just turn up and talk, or so I thought. The last thing I wanted was to read from a script.

At this point I found out that there would be around 200 nurses, in a proper lecture theatre and  I would be talking at the end of the afternoon. It dawned on me that to do the subject justice, and not short change the nurses, I would at least need some notes and something to keep everyone awake. Where’s that mind map software?

mind_mapI was rather staggered by the sheer number of topics I came up with. After much arranging and re-arranging I wrote them down as a series of headings and bullet points. That would do. I tried a run through. TERRIBLE. I stumbled over the words to flesh out each point. I would have to give in and write out some notes.

Another run through and nearly as bad  – stilted, hesitant, repetitive…..  I would have to give in and write the talk out word-for-word, the very thing I didn’t want to do.

Having just written a book (100,000 words) using iBooksAuthor software I decided it was the right tool  for this new task.  There is one particular feature that is indispensible – the option which allows you to take your text, convert it to speech and then save as an mp3 file for listening to on an iPod. Why this extra step?

I find that no matter how often I read text through, either on screen or in printed form, it is very difficult to pick up words that have been repeated too often or where simply by changing the structure of a sentence it makes a far better read. Listening to the text several times also gives you a chance to start taking it on board and makes one’s delivery more polished.

Here’s an example as an mp3. Not marvellous but good enough to run through the words without being distracted by the text on the screen. It shows how easy it is too identify a missing word.

After several further iterations, including two read throughs to my wife, I was finally happy with the contents.

Now it was time to remember all those tips I picked up on the various corporate presentation courses I had been sent on – move around the stage, make eye contact with all parts of your audience, generate some audience participation by asking THEM questions, communicate with passion and finally include a surprise.

THE BIG DAY

When I got to the lecture theatre, with a real live audience, it suddenly became a lot easier. I did use my text but just as a “confidence safety net” and to make sure I didn’t forget anything (which I still did). I had taken a small camera with me but unfortunately didn’t get there in time to set it up properly so the sound wasn’t brilliant.

The resulting video was rather long all in one go so I’ve split it into three parts. Of the three I think that the second one covering surgery and stomas is the most representative. I’ll let you judge the result.”

Kings College Hospital, Lecture Theatre

I wasn’t expecting that round of applause for my stoma stunt!

This has to be my Health Activist highlight as it was the first time I had spoken in public and gave me a chance to give an insight into IBD to the nurses who will end up looking after patients, some of which will have IBD. It’s whetted my appetite to take it further. I rather fancy talking to some consultants and doctors next.