Follow-up letters from appointments are an important part of your health records. They should contain what was discussed with your consultant, any conclusions arrived at or changes in medication etc. By default Guy’s and St.Thomas’ write to your GP after each appointment and copy in the patient under cover of a note that states “this is primarily a communication between medical professionals” (which I think is another way of saying “you probably won’t understand all the words we use”).
Now it has to be said that not all Departments stick to the “default” and I have had a couple of occasions (both with the same department) where the lack of letters caused issues. This is where my blog posts recording the latest appointment have proved more than just an exercise in self indulgence and why I read them prior to my next hospital visit.
The first time this happened was in March 2013 when I attended a regular appointment and was greeted by a doctor I hadn’t met before. We went into one of the side rooms where my notes were open on the desk. He introduced himself and said that he had been reading the notes to familiarise himself with my case. I had been hoping to see my usual consultant as I liked continuity and had issues with the lack of follow-up letters that I needed to raise with them. Unfortunately they were unavailable for that day’s clinic.
The new doctor said that, having read my notes, it was apparent that the condition I was suffering from was rare and started to discuss my low platelets. He noted that I had last been seen in October 2012. I stopped him in his tracks and said this was a clear reason why up-to-date notes and follow-up letters were so vital. There had been two further appointments since October and the platelet issue had been “parked”. A new, far more serious, condition had arisen – PVT (Portal Vein Thrombosis). This was now the priority.
I explained that this was an important appointment for me as I was expecting to run through my risk profile and at the end of it make the decision on whether to start blood thinners. My regular consultant had said they would discuss my case with th Department’s Warfarin expert, one of the professors.
At that point I started to think that this was all going to end up badly. I needed to kick start a reaction so I asked whether the professor was in the unit that day and what I needed to do to see her. Clearly this was never going to happen but it was worth a try! The doctor said that he would see if he could speak to my original consultant.
A few minutes later he returned with another consultant. I recognised her name as my clinic letters always stated that I was under her ultimate care. Putting two and two together she must have been the next one up the food chain from the doctor I usually saw. I went back over my expectations from this consultation. She explained that she worked closely with the “Warfarin Professor” and they jointly reviewed patients.
She ran through the risk factors and having looked at my notes and results, on balance, she would not recommend Warfarin yet. As far I was concerned it was the “right” answer. If there was a low risk of clotting then I was prepared to take that risk to avoid having starting yet another medication. Decision made, no Warfarin.
A month later I was still awaiting the missing follow-up letters. Time for some further action. I sent an email to the head of department (whose address I found on their web page). I apologised for contacting her directly but explained that raising the issue in clinic was having no effect. I added: “I thought it was therefore best to go straight to the top so that you can delegate any necessary actions…….” and briefly explained what had happened at my last appointment.
I hit the send button and got a very prompt response, 20 minutes later, apologising and saying it would be looked into.
The four missing letters arrived shortly afterwards, with an apology. I checked their contents against my blog and they were accurate records of the appointments.
From the above I’d like to pass on two thoughts : 1) that keeping your own record is important and can prevent a waste of your time and a waste of NHS resources going over old issues that are already “parked”; 2) if you are having a problem with getting follow-up letters then go to the top and ask for their help. I have found those four little words “can you help me?” have opened up many situations whilst negotiating the pathway s through the NHS.
(I’ll leave the account of the second missing letter issue for another time. Suffice to say that I could have ended up having a third bone marrow biopsy! Not something I would recommend)
I like to think that I’m a good patient. I very rarely forget to take my medication; I always turn up for appointments; I try to enter the consulting room with a positive attitude and clutching a list of questions.
…but I’m also a difficult patient. I think it’s true of any IBD patient that we are “difficult” because it is likely that on first presentation to our GP our symptoms could have a number of possible explanations. At least more doctors are becoming aware of IBD as an avenue for investigation. It took 8 months for my positive diagnosis of Crohn’s disease, via “nerves” and “spastic colon” along the way.
The difficulty continued. My platelet count dropped dramatically (thrombocytopenia). The most likely explanation? “It was the azathioprine.” So I stopped the azathioprine, my platelets showed no improvement and I ended up having surgery to remove a stricture.
Azathioprine is known to potentially affect the blood which is why we should have regular blood tests when taking it. Although my platelet count was around the 70 mark (usual range 150 – 400), I was asymptomatic. If I cut myself I didn’t bleed any more than usual and after several visits to see the haematologist it was decided to park the issue as it wasn’t affecting any other treatment. I had been in remission and Crohn’s drug free since surgery.
But what if the Crohn’s started to flare again and my gastro consultant decided the best treatment would be to restart the Aza? I put this to him and he agreed that we should un-park the question and try to find out whether the drug was to blame.
Off to see the haematologist again and two bone marrow biopsies later it was decided that Aza was the probably the guilty party, had attacked my bone marrow which in turn suppressed platelet production. (…..not everyone agrees)
The second “difficulty” was when I started vomiting blood, an incident that I have mentioned many times before. Into our local A&E and then admitted as an in-patient. The consultants there were expecting to find an ulcer. To confirm their suspicions they shoved a camera down my throat and were surprised to find esophageal varices. A simple-to-treat ulcer was actually something a lot more sinister.
One ultrasound scan later and it was identified as portal vein thrombosis. Time to pass me back into the care of my usual hospital. Treatment would involve both a hepatologist and haematologist. At my first meeting with the hepatologist I asked what could have caused the blood clot in my portal vein. He said that the most likely explanation was that it resulted from peritonitis brought on by a perforated bowel over 30 years previously. I have to admit I still struggle with this explanation. Why did it take 30 years to come to a head? Result – beta blockers and proton pump inhibitors.
The haematologist suggested that I started taking blood thinners to combat the threat of further blood clots. I really didn’t want to take any more medication than strictly necessary so we did a risk analysis and concluded that it was 50/50 for and against. Result – no warfarin. Another issue successfully parked.
Then came the jaundice as a result of gallstones. I met with upper GI surgeons at both my local and Kings College hospitals. The usual treatment would be to whip out my gallbladder using keyhole surgery but, of course, my case is not so simple. Previous laparotomies have left scar tissue and adhesions that would preclude a keyhole operation. Then an MRCP scan showed that the varices, that had grown down my throat, had also grown around my gallbladder. Aaah!
What have we concluded? The choices are to operate now to prevent a problem in the future “that might never happen” or to postpone the decision and review again in 6 months time. He was minded to go with this second option. I wholeheartedly agreed with him.
…and finally there’s the little matter of conflicting test results. As it was the subject of my last post I don’t intend to repeat it here but it leaves me with questions. Is the “wait and watch, let’s park that issue” a valid strategy or best option in this instance. If I asked for further investigations to be done would I simply be using up valuable NHS resources carrying out tests that might make no difference to, or even worsen, my QOL? Would it even be clear which further tests could be carried out? As I said in that previous post, curiosity is getting the better of me but I’m not going to lose any sleep over it. That’s one of the advantages of writing a blog. You can get all your thoughts down in one place and then, you guessed it, park them.
Maybe there are no clear cut answers but I’m starting to feel that my “difficult patient” status can only get worse as the ageing process kicks in. Oh for a simple life.
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”
Apart from the physical and psychological effects of Crohn’s Disease there’s one aspect that I don’t see mentioned that often – the huge amount of time that patients can spend attending appointments and undergoing tests or procedures. Just how disruptive this can be has been brought home to me since my ileal re-section in October 2010.
To give you a flavour of the types of tests and procedures Crohn’s (and related conditions) can require I have extracted descriptions, from my blog, of the different types of tests I’ve been through over the years. These are my experiences, yours may be completely different.
Apologies – this is quite a long post – but I have been through many procedures and some are quite involved. I’ve arranged them in alphabetical order.
Can I have my life back?
BARIUM ENEMA – Mayday Hospital – 1978
Of all the procedures I’ve been through I think this is the most undignified. Having taken the usual purging prep the previous day, arrived at the hospital and changed into a gown, I ended up on a bed with a tube stuck where the sun don’t shine and barium liquid being poured down it via a large funnel. Once I was “full” the instruction came “to try and to hold it all in” whilst the tube was removed and the x-rays taken. Just writing this I am clenching my buttocks as I remember that feeling of the tube being gently withdrawn and then it’s all down to muscle control.
With the x-rays complete, there was the dash to the nearest bathroom to allow what went in to come out, rapidly. I think I’d sum up the whole experience as unpleasant and the most likely to end in a very messy situation involving embarrassment, mops, buckets and cleaners.
To my surprise, 40 years on, the procedure is still used occasionally
BARIUM MEAL AND FOLLOW THROUGH – Mayday Hospital – 18th May 1999
This is etched in my memory. As with many of the procedures there was the prep to take the day before which effectively emptied my digestive system. I arrived at hospital and changed into one of those backless gowns that are impossible to fasten properly without help. It was then back to the waiting area. Just putting on the gown already lifts the stress levels and sitting like that in a public waiting area just makes it worse.
The first problem was swallowing the barium meal – a thick, off-putting, tasteless sludge. Having downed the final mouthful there was then a wait whilst it made it way slowly around my digestive system. I was taken to a bed and told to lay on my right hand side for 45 minutes as this would aid digestion. I was then shown into the x-ray room.
I lay face up on the x-ray table whilst the radiographer took a preliminary scan but was not happy with the result. He was having difficulty in getting the barium meal to move around my system due to a stricture. He produced a rubber beachball which he placed between the x-ray head and my abdomen. He then proceeded to bounce it up and down and it slowly did the trick. The x-rays showed that the terminal ileum stricture was as bad as ever. My bowel was down to the size of my little finger. As a result my consultant gave me the choice of starting Azathioprine or having surgery. I chose the Aza.
CALPROTECTIN – Various dates
The procedure is relatively simple – collect stool sample (the most difficult bit); send to path lab; wait 10 days for result. Lab manage to loose result or come up with lame excuse for not processing it. Repeat process all over again.
Research has shown there is a good correlation between the calprotectin result and what one would discover by colonoscopy. There are always exceptions to the rule and, unfortunately, I seem to be one of them. I have a constantly rising calpro figure but with, at present, no definitive explanation. Watch this space.
CAPSULE ENDOSCOPY – Monday 19th November 2018 – St.Thomas’ Hospital
The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and my anastomosis. It was decided that it would be worth seeing if there was anything there that could explain my very high calprotectin results. The test would involve swallowing a capsule containing the camera, LED lights and a transmitter. I would have to wear a recording unit for 12 hours whilst the camera made its journey southwards.
The preparation is similar to having a colonoscopy but with none of the dreaded prep solution needed. The instructions 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 that length of time was not even worth considering.
I arrived at St.Thomas’ and was collected by the specialist nurse. She asked the usual questions and 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.
The first task was to attach the numbered sensors in the correct positions around the abdomen. Once 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.
It was time to see how easy swallowing a capsule would be. The answer – very easy. 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 turned the display 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 just before midnight 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 (except they weren’t).
Earlier in 2018 I ran a non-scientific poll on SoMe asking which procedure IBD patients found the most unpleasant. Out of 663 respondents, the three most unpopular were – MRI scan 10%; endoscopy 30%; but the clear winner was colonoscopy 58%. Every stage is unpleasant – preparation; fasting; the camera; and the aftermath. So I make no apologies for writing more about this subject than the others.
Preparation Day – Wednesday 19th December 2012 – the day before the procedure the serious “prep” started. I was allowed a light breakfast then only liquids such as fruit squash and Bovril. At midday there were 4 senna tablets to swallow. An hour later I took the first sachet of Citrafleet (sodium picosulfate) mixed with 150ml of water. It didn’t taste that bad and quickly took “effect”. That’s the “effect” that stops you from straying very far from the toilet! When it got to 5 o’clock it was time to take the second sachet. (There are other types of preparation solution in use but they require consuming much larger quantities – KleanPrep – 4 x 1 litre; MoviePrep – 2 x 1 litre – just adding to the misery)
Citrafleet – sodium picosulfate
Procedure Day – Thursday 20th December 2012
Having not eaten anything since the previous morning the hunger was getting the better of me. I was allowed to drink water up to 3 hours before the procedure to avoid dehydration.
I arrived at Guy’s ready for the early afternoon appointment, accompanied by my wife. Due to the use of a sedative the test would not be carried out unless I had someone to accompany me home safely.
I changed into a surgical gown ready to go. My blood pressure was checked and I was asked the standard questions about allergies and medications. There was then a long time spent in the waiting area until a cannula was inserted into the back of my hand. After another wait the doctor arrived. I had not met him before. He sat down to talk through what he was about to do and get me to sign the consent form. Once I arrived in to the procedure room I asked to have minimum sedation as I wanted to watch the camera images on the screen.
Before starting with the camera he asked me various questions about my medical history and the medications used. I explained that a recent MRI scan suggested that the Crohn’s had flared up again in both my large and small intestines. The colonoscopy was expected to confirm this. He then explained the potential risks of the procedure, the main one being the risk of perforating the intestine and requiring surgery to correct it. I signed the consent form and we were ready to go.
I was told to lay on my left hand side, with my knees drawn up to my chest, and the camera was stuck where the sun don’t shine. It all started OK and there was no sign of any inflammation. A real surprise. The camera continued on its way but then reached the left splenic flexure (the sharp bend where the colon turns to run horizontally across the body). Try as he might the doctor could not get the camera to go round the corner. He tried withdrawing it a little and then pushing again. He got the nurse to push hard against my abdomen to ensure my gut was lying flat. He tried getting me to lie on my back. Nothing worked. There had never been a problem in the past and after 50 or so minutes the procedure was aborted. Surprisingly I felt no after effects.
A further colonoscopy would need to be booked or possibly they would try a capsule endoscopy.
COLONOSCOPY (2nd ATTEMPT)
Procedure Day – Thursday 20th December 2012
A very early start to get to Guy’s Hospital for 8:30am. The pre-colonscopy preparation and procedures followed the same pattern as before.
I was pleased to see the friendly face of my lead consultant appear. (He has similar skills to Lewis Hamilton for getting round bends). He had asked me to ensure that I booked a slot when he was in clinic as he wanted to carry out the procedure personally and it had worked. He ran through the potential risks and got me to sign the consent form. We discussed what had happened during the previous colonoscopy. It wouldn’t be long before I would be lead into theatre.
It was another 30 minutes, in which time I was cannulated and then, at last I was on. I walked into the theatre and lay on the table. The oxygen supply, heart monitor and blood pressure armband were all fitted and I was asked to roll onto my side with my knees drawn up. The doctor injected doses of Fentanyl (a synthetic opiate analgesic more potent than morphine), Midazolam (a short-acting central nervous system depressant) and Buscopan (used to relieve spasms of the gastrointestinal tract). You’d think that this cocktail of drugs would knock you out but no, you remain conscious but comfortably numb.
I was asked if I wanted to keep my glasses on and I said “yes” so that I could watch the action on the monitor. Sharp intake of breath and the camera started its bendy journey. It made slow progress but by careful guidance, and some shifting of my position, it made it beyond the splenic flexure and then continued all the way to the anastomosis.
So what did we see in glorious living colour on a large screen – NOTHING. No signs of active Crohn’s Disease. This was the result I was hoping for but didn’t really expect. The consultant assessed my anastomosis as Rutgeert’s score i0. (The Rutgeert’s score is used to predict the course of postoperative Crohn’s disease (CD) and to establish the need for treatment for recurrence prevention. The score i0 translate to post-operative remission).
COLONOSCOPY (WITH A TWIST) – Saturday 11th March 2017 – St.Thomas’ Hospital
I knew this scoping was going to be a bit different. Firstly, the timing instructions for taking the prep had changed. They now proposed taking the second dose on the morning of the procedure! This did not sound like a good idea given I had at least an hour’s journey by train. I chose to take it late the previous evening.
Secondly, it was a Saturday morning and I had agreed to take part in a teaching session as it meant I only had to wait just over 2 weeks for the procedure. By 10:30 I was wristbanded, cannulated and off to change into a pair of very stylish paper boxer shorts with a velcro flap at the back. Once I had donned hospital and dressing gowns it was into the male waiting area until they were ready for me.
The Gastro registrar appeared and explained that he would start off 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 and given the sedation. 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 relative 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.
In the room next door my regular consultant was acting as chaperone to the group of international gastroenterology students who had come to St.Thomas’ to see “how we do it” in the UK. The screen on the wall flickered into action and two way communication was established. He briefly outlined my Crohn’s history and I was able to fill in some of the details. He explained the MRI issue that needed resolving and called up a copy of the report from my electronic file.
With a lot of perseverance, and gas to inflate the gut, the scope had reached the rejoin. I wonder whether the distraction of the video link caused me to relax and let the scope pass more easily. From then on the consultant gave a running commentary on what appeared on the screen. It was fascinating and informative. There was a debate between the 3 gastros as to which Rutgeerts score they would give my anastomosis. Was it i0, i1 or i2? The conclusion – i0.
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. 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?
CT SCAN – East Surrey Hospital 2009
My last CT scan took place before I started blogging in earnest so I didn’t write a full account at the time. It is, however, a very significant test in my history of Crohn’s and is the procedure that confirmed surgery was inevitable. I can remember I was desperate to have the scan as I knew things were going very wrong internally. Rather than just book an appointment I explained my predicament to the appointments clerk and said that I could be available at fairly short notice should a cancellation arise. It worked and I was seen within a few days.
I don’t remember much about the actual procedure apart from sitting in the waiting room having been told to arrive an hour early to drink some liquid. The liquid turned out to be water and I was presented with a litre jug and a glass. I wasn’t sure how I would get through it all so decided to set myself a target of downing a glass every so many minutes. It was a good plan until a very apologetic nurse appeared with a second litre jug and said I should have given you this one to drink as well. Daunting.
When I went for my next outpatient’s appointment in June the radiologist’s report was not available. The scan itself was on the system so my consultant opened up the file and we watched it on his computer screen. The first thing that struck me were the large areas of solid black that appeared. To my untrained eye they looked serious and I wondered if they represented growths in my abdomen.
Luckily they were just air pockets which show up as black voids.
My consultant explained that the scan needed an expert to fathom out what was going on. He was not knowledgeable enough to be able to interpret what we were seeing.
It wasn’t until the next appointment in early August that I was told the CT report was now available. The delay was because of the complicated picture with both ileal disease and the suspicion that I was fistulating from there into other parts of the small bowel, possibly the sigmoid. The suggestion was that I may have a localised perforation “with no definitive collection”. My consultant put it in layman’s terms – “It looks like you’ve got an octopus in there” and hence the name of this blog!
FIBROSCAN – Monday 12th November 2012 – St.Thomas’
This is the non-invasive alternative to a needle biopsy. To quote from the unit manufacturer’s literature – “a mechanical pulse is generated at the skin surface, which is propagated through the liver. The velocity of the wave is measured by ultrasound. The velocity is directly correlate to the stiffness of the liver, which in turn reflects the degree of fibrosis – the stiffer the liver, the greater the level.”
For this procedure you lie on a bed with your right side exposed and right arm above your head. Some jelly is applied to the probe and then it is placed against your side and triggered to send a pulse. This is repeated 10 or so times.
The machine then aggregates the scores and gives you a value. Mine came out as 7.2. The nurse said that up to 5 was normal and above 12 would cause concern therefore my value showed that there were some fibrosis. (A second Fibroscan in 2017 had increased to 7.8)
FLEXIBLE SIGMOIDOSCOPY – September 2010 – St.Thomas’ Hospital
Just like a colonoscopy but with a smaller, shorter endoscope. The surgeon, who would be carrying out my ileostomy, wanted to have a look for himself to see if there were any fistulas into my lower colon.
LIVER BIOPSY – Wednesday 12th December 2012 – St.Thomas’ Hospital
The day of the liver biopsy had arrived. I’d covered all the bases so it should go smoothly. This is a standard procedure that is done every day but for some reason I’ve found the thought of it quite daunting. Not the actual procedure itself (although this is what Patient.co.uk says on the matter – “Although liver biopsy may be an essential part of patient management, it is an invasive procedure with a relatively high risk of complications”).
Start time was set for 9:30 at St.Thomas’ and the letter said be there 30 minutes early to get prepped. I needed to be escorted on the journey home so my long suffering wife accompanied me.
We arrived at St.Thomas’ well before 9:00 and made our way into the warren called Interventional Radiology. I booked in with one of the nurses and we were shown to a waiting room. The nurse came back with the consent form to start filling out and then disappeared.
About ten minutes later I thought I heard my name mentioned together with “Where is he? They’ve been looking for him for 20 minutes”. A little bit disconcerting. We sat tight and the administrator appeared and said “Your platelets are very low and they are concerned about the procedure. You were expected in last night to get prepared. Did anyone call you? They’re going to try and ring you on your mobile”. I checked my mobile but hadn’t missed any calls.
At this point I could see the wheels coming off the wagon. Luckily I had brought with me a copy of the email trail which explained who I had spoken to and what I had done to make everything, supposedly, go smoothly. I explained all this to the administrator. She disappeared for a while and then returned to say that they were waiting for a call from one of the doctors to see how they wanted to proceed. By now we were approaching 9:30 so I could see my “slot” disappearing.
After a few more minutes the nurse re-appeared and put on my patient wristband. This was a good sign and then another nurse appeared with hospital gowns and slippers but told me not to put them on until the doctor had run through the consent form and I had signed it.
A few more minutes and the doctor appeared. Good news. The procedure was going ahead. She went through what they were going to do during the procedure and what the various risks were. The main ones being bleeding from the puncture wound, damage to the biliary ducts and not getting sufficient of a sample therefore needing a further procedure at a later date. I signed the form and then changed into the gowns. Being an upper body procedure you only have to strip to the waist.
I went into the preparation area to have a cannula inserted. Straight into the vein in one go. At 10:10 I was taken down to the theatre and lay on my back on a trolley with my arms over my head. Two doctors introduced themselves and proceeded to scan my liver area with an ultrasound probe. They discussed the best entry point and route for the needle. Once they were happy with where it was going one doctor took over and it was time to get the area ready for introducing the biopsy needle. The area was cleaned down and a sterile sheet stuck in position with an opening at the puncture site. Ready to start.
First, local anaesthetic was injected around the area. The biopsy needle was then slowly introduced through the skin, guided by the ultrasound scan. There was one point which sent a short, sharp pain through my lower abdomen and that’s when the needle passed through the outer membrane of the liver. I was expecting the needle to go straight in, take a sample, and then be quickly withdrawn but the process actually takes a lot longer as it is slowly guided into position. Every so often I was getting a sharp pain in my shoulder. I’ve learned not to “be brave”, and keep quiet, as the pain may indicate a problem. I told the doctor what was happening and she adjusted the needle position accordingly. I don’t know exactly how long the whole thing took, probably 50 minutes all up. It was quite a relief to hear the words “All finished”.
I was told to roll onto my right side as this applies pressure to the wound and helps it seal. Back in the Recovery Room the nurse explained that I had to stay on my side for 2 hours. After that I would be able to lie on my back and eat and drink but would need to spend a further two hours in Recovery before I could go home. I was wired up to a blood pressure/heart rate monitor and every few minutes one of the nurses would check to make sure everything was OK. I rang my wife to tell her what time I could be collected and then settled down for the two hour wait before eating.
Once the two hours were up I was allowed to roll onto my back and sit up. I was presented with an NHS Snack Box – sandwiches, crisps, yogurt, fruit juice and a chocolate biscuit. Never seen one of those before. I had some questions, mainly to do with what to look out for that would indicate if something was going wrong. The nurse patiently explained the potential signs of trouble and answered my more general questions.
The next two hours passed fairly quickly and just before 15:00 the doctor, who had carried out the procedure, came to see me to make sure everything was OK and sign me off. My wife had turned up so it was a quick change out of the gowns and we set off for the station. I never did get to the bottom of “we were expecting him in last night”.
My initial reaction when this procedure was first mooted was “so you’re going to push a large needle through my hip bone and collect some marrow all without the aid of a drill?”
The procedure was planned for mid-afternoon so I went into work as normal. I told various colleagues that I wouldn’t be around after lunch and explained why. Every single one of them uttered the same 3 words “that sounds painful”. After you’ve heard it for the umpteenth time a few nagging doubts set in. The previous week I had asked the haematologist if it would hurt to which she replied “you’ve got Crohn’s and had surgery. You’ve dealt with pain! This will be nothing by comparison”.
Having checked into the clinic the nurse came over and fitted an identification wristband. She said that I shouldn’t have to wait too long. When the doctor appeared. Her first reaction was “have you come alone?” That sounded a bit alarming. I asked why I would need to be accompanied and she replied that most patients were nervous about the procedure and liked to have someone with them. Whatever.
She showed me into a treatment room and I lay on my right hand side on the bed. She explained what she was going to do, where the needles would be inserted and then did the usual risk assessment talk. There was not a lot that could go wrong as the needles go straight through the skin into the hip bone and nowhere near any vital organs.
She asked me to pull my knees up to my chest and adopt a foetal position. She found the best location for the needle and thoroughly cleansed the area. This was followed by a series of shallow injections of local anaesthetic and was the most painful part of the whole experience but really not too bad. Certainly nothing to get hung up about. Some deeper injections were made but by now the local injections were working so I felt very little. A few minutes later it was time for the first sample needle to be inserted.
The aim is to get a sample of the aspirate (liquid) that can be spread onto microscope slides for an initial examination. She was having problems getting a good sample that wasn’t contaminated with blood as it kept clotting (which goes against what you would expect from someone with low platelets). Because I was tolerating the needle so well she took some more samples but explained that as long as she could get a good core sample then the quality of the liquid samples wasn’t important.
Time for the coring needle, which was quite a bit larger than the previous one. If you’ve ever seen one of those food programmes about cheese no doubt there will have been a scene where the cheese-maker inserts a coring tool into the cheese and pulls out a sample. Same principle here!
It takes a fair amount of force to push the larger needle through the outer layer of the bone. I could certainly feel it as it went deeper in. It wasn’t so much pain as a dull ache that traveled into the leg. After a couple of minutes of pushing the needle into the right depth it was withdrawn and the sample released. She was very pleased with the resulting core and set about dressing the puncture wound.
I then spent 15 minutes lying on my back whilst the blood clotted and sealed the wound. I was told that a nurse would come and tell me when I could go. After 20 minutes or so she came in and looked at the wound. It was fine so back on with my shoes and down to the station to catch the train home.
If you have got to have this procedure done it really is fairly painless. Once the initial local anaesthetic has been injected it’s pretty much plain sailing.
Unfortunately when the aspirate slides were examined they were found to be too contaminated with clotted blood. A few weeks later I underwent the whole process again but this time with the use of Heparin to avoid the clotting.
MRI SCAN – Monday 30th April 2012 – St.Thomas’ Hospital
I hadn’t had an MRI scan before so wasn’t sure what to expect. The main thing I’d been told was that some patients found the whole process claustrophobic. Because the scan was concentrating on the digestive system I wasn’t allowed to eat for the 8 hours prior to the test and was asked to arrive 1 hour early to drink a “special fluid”. This fluid looked very much like wallpaper paste but was lemon flavoured. There was a litre to drink and as I got closer to the bottom of the jug the consistency felt like wallpaper paste. Next time I have to drink MRI prep I’ll make sure I keep stirring it throughout.
The nurse then put a cannula into my arm ready for the contrast dye to be introduced.
When it had had time to move into my system I was taken into the scanner room. You’re confronted with a large, ring doughnut shaped bit of kit with a trolley that slides in and out. I was asked to lie face down on the trolley with my arms above my head. Not the most comfortable position when you’ve just drunk a litre of liquid. The radiographer explains what to expect and tells you that at various points within the test process you will be asked to hold your breath. Didn’t sound like a problem but you have to exhale first and that makes it a lot more difficult. You are given a set of headphones to wear as the machine is “quite noisy”. At least I didn’t get claustrophobia as I went into the tunnel feet first.
She wasn’t kidding about noisy. The best way I can describe it is being caught in the middle of a game of space invaders. The machine makes some very loud sounds and then, towards the end of the first test session, the table you are lying on starts to vibrate. A very strange feeling. The contrast dye is then introduced and the whole test sequence repeated.
When the tests were completed another nurse asked me how I was getting home. I said by public transport. He replied that the litre of liquid that I had just drunk was specially formulated not to be absorbed by the body and that I might want to wait around a bit before catching a train. I then realised the significance of his comment but not being one to shy away from a challenge, decided to jump on the train and see what happened.
I’m pleased to say that nothing, not even a hint of having to rush off to the loo. In fact the effect of the prep liquid was very short lived.
The results weren’t available straight away as they had to be interpreted by an MRI radiologist. There was a three week wait before I saw my usual consultant.
(St.Thomas’ have since changed the “special” liquid for Mannitol, a foul tasting solution)
MRCP SCAN – Thursday 5th July 2012 – Guy’s Hospital
The consultant wanted to have a look at my spleen and liver which meant no need for fasting beforehand or having to drink any special fluids. This time I was laying on my back, going into the machine head first. This was a lot more comfortable that the previous scan, in April, where I had to lay on my front with my arms above my head.
The whole procedure lasted about twenty minutes and was slightly less noisy that the St.Thomas’ machine. Because I knew what to expect I found the breathing out and then holding one’s breath a lot easier to cope with. Halfway through the radiographer said they were now going to inject the marker dye into my arm. Usually you can feel this cold liquid coursing through your veins but this dye must have been at room temperature as I never felt a thing.
SeHCAT SCAN – 29th July 2014 – St.Thomas’
A simple procedure for measuring the level of bile acid malabsorption. It involved a trip to St.Thomas’ Nuclear Medicine Dept. to swallow a radioactive pill and then return three hours later for scans – 5 minutes lying on back and then repeat lying on front. Then a further visit, one week later, for follow-up scans. The system then compares the two and works out how much of the radio active tracer has remained in the system and from that the bile acid absorption.
UPPER GI ENDOSCOPY – Monday 3rd September 2012
Back to St.Thomas’ Hospital, this time for an endoscopy……at least that’s what I thought. Of all the tests I find endoscopies the worst to deal with and would always choose to be fully sedated. The implication of sedation is not being able to drive for 24 hours afterwards and I really needed the car the next day so I took the decision before I went in that I would only have the throat numbing spray and nothing else.
I had assumed that the doctor would just be having a look down my upper GI tract to see what state my varices were in. Wrong! She explained that the intention was, if necessary, to treat the varices by banding, and for this I would need to be sedated. I would also need to have the whole procedure repeated in another three weeks and then again in a further three weeks.
She went through the risks associated and got me to sign the consent form. I then had a cannula inserted in the back of my hand and I was ready for the procedure. After a few minutes I was wheeled into the testing room, had a couple of squirts of throat numbing spray (xylocaine – tastes of burnt bananas), gripped a camera guide between my teeth and then the sedative was injected into the cannula.
Next thing I knew I was lying in Recovery. When I had woken up sufficiently I was given a copy of the endoscopy report that would be sent to my GP. The doctor had found three large varices with high risk stigmata and had applied 6 bands to them. The nurse told me that I must only have liquids for the next 24 hours and then three days of “sloppy” food. Now maybe it’s a man thing, but the sandwiches I had brought with me looked very appetising, so I waited a while and then tucked in, ignoring the nurse’s advice. Maybe stupidity is a better description because it did hurt swallowing and I know not to do it again.