Living with a timebomb

I’m not trying to scare anyone with this story. It is very unlikely you will experience the same but it is worth being aware of yet another part of the rich tapestry that Crohn’s Disease can weave for us.

This is what happened…..

Monday 28th May 2012 – Outpatient Appointment at Guy’s.

The original intention was to go into work as usual then catch the Tube down to London Bridge in time for my 10 o’clock appointment. I wasn’t feeling so good so decided to catch a later train and go direct to the hospital. I’m used to an early start with virtually no traffic so rather underestimated how long it would take to get to Redhill station from home. By the time I got to the station I could hear the train pulling into the platform. I didn’t realise that it would wait there 5 minutes before leaving so I tried to run and realised just how bad I felt. My chest started heaving and my heart pumping. I really thought I was having a heart attack. Once I was on the train I managed to take some deep breaths and gradually return to some type of normality.

I made my way to the Outpatients Dept. in time for my appointment but then had a long wait before seeing my consultant. When I was finally called in I was relieved to find that I was seeing the top man, not one of the registrars. He did apologise for the long wait.

We went through my list of queries and eventually discussed  the issue I was having with passing a jet black liquid from my back end. He asked me to get a sample for analysis which I thought would be easy but no luck. He also asked me to make an appointment to repeat the colonoscopy to verify the results of the MRI scan.

Eventually I was on my way home and by now the temperature was high. I bought a bottle of cold drink and then boarded the train back to Redhill. By the time I got home I was feeling pretty exhausted and went to have a lie down to recover. Around six o’clock I started to feel sick so disappeared into the toilet and then it happened… (don’t read any further if you are squeamish)

I brought up a large amount of what looked like redcurrant jelly but was clearly freshly congealed blood. I must have gone into shock for a few minutes, thinking “What do I do now?” (Not like me at all. I usually come quickly to terms with what is happening, decide the best actions to take and get on with it but this was like nothing I had experienced before and for a while I couldn’t cope).

I came to the conclusion that this was definitely a 999 moment. I heard my wife coming back from feeding our ponies so called out to her to ring the number. She made the call and then responded to the long series of questions that you now get asked by the operator. The decision to send an ambulance was made and my wife then hurried herself to get together some things into a bag before the ambulance pulled up our sideway. She didn’t quite finish as the ambulance arrived incredibly quickly. When she opened the door she recognised the paramedics as the ones who had taken me into hospital the last time we had reason to call 999 (see “Post Op – Back Home” page – 12th November). They came in to see what state I was in, took one look at the blood surrounding me and, to put me at ease, told me that it was only a small amount!

I was loaded into the ambulance and then went through various tests before we set off. They were obviously concerned at my state and said that my blood pressure was very low. They put me on a drip and the driver said “I think we’ll go for the siren”…….

A few minutes later we arrived at East Surrey Hospital and I was taken straight into the Accident and Emergency assessment area and was immediately seen by a doctor to make sure I was stable. Over the next hour or so I was seen by a couple more doctors whilst they decided the best ward for me to be sent to. Their decision was to admit me to the Medical Assessment Unit where I underwent further assessment. By this time my sister had turned up to take my wife home so we said our goodbyes and I waited to see where I would end up.

My wife returned home and had to clear up the blood from the floor. I’m so lucky to have someone so tough to support me when things are going wrong.

The decision was taken to send me to the ward which specialises in gastroenterology and I was duly taken to this new ward. I then saw the doctor on duty who made sure I was comfortable and worked out what drips I needed to be on.

Tuesday 29th May 2012 – the rest of the night was spent undergoing regular checks on my blood pressure and temperature. I didn’t get much sleep but was just happy to be in the best place, given the condition I was in.

During the day I saw various doctors who were trying to decide which tests I should undergo. The immediate priority was to have an endoscopy (camera down throat) to see where the blood had come from. They tried to get me onto that day’s list and so I wasn’t allowed to eat anything. Unfortunately an emergency case took priority and at six o’clock I was told that I could eat some supper. Apparently the doctor was very surprised at how calmly I took the fact that I wouldn’t be having the test done that day and said she wouldn’t have been so laid back.

They decided that I needed to have a blood transfusion as my blood count had fallen to 6.6. The normal figure for a man is around 14. I therefore had two drips going into the cannula in my left arm.

Wednesday 30th May 2012 to Monday 4th June  – The blood transfusion had brought my blood count up to 8.6, still very low. Over the next few days I had the upper GI endoscopy. I think the doctors were expecting it to show that I had an ulcer, which had burst, or that the Crohn’s inflammation had spread into my stomach. What they actually found were esophageal varices, prominent veins in the lower third of the esophagus and usually related to alcoholism! I looked them up on the internet and found that there is a possible link between them and the Azathioprine drug that I had been on for seven years.

The next step was therefore to have an ultrasound scan to look at my liver as sometimes damage to one of the large veins could route the blood supply into the esophagus causing the varices. I asked what the outcome of this test was and it sounded like nothing particularly untoward showed up apart from a gall stone and a slightly enlarged spleen. I would ask again later, just to make sure I got that right.

The whole ward then went into a sort of 4 day limbo as it was the extended holiday weekend to mark the Queen’s Diamond Jubilee. The number of doctors was greatly reduced and were only seeing patients by exception. I resigned myself to not progressing any further with an explanation of my problem until the following Tuesday.

The phlebotomists did their usual rounds every day and I later found out that my blood count had dropped to 8.0 from 8.6. Not good and would prolong my stay in hospital. The ward sister said that the doctors would be doing a proper ward round on the following Tuesday so I had plenty of time to get a list of questions together. I resigned myself to not progressing any further with an explanation of my problem until then.

Tuesday 5th June 2012 – I knew at some point I would encounter the consultant that I had emailed around a year ago saying that, basically, I was now being treated by St.Thomas’ so not to bother to make any further appointments for me. I had a very good reason for doing this and it is recorded in my book (when it finally gets published).

I’m not going to go into all the details of this encounter but suffice to say that initially he would not look me in the eye and my decision, a year ago, was clearly still bugging him. I reiterated my original reason for leaving his care and this may not have helped the situation. (My decision to move to St.Thomas’ was not taken lightly as it is far easier for me to get to East Surrey Hospital from home, approx. 10 minutes, than it is to get to St.Thomas’). At one point it was suggested that maybe it would be best for me to be put in an ambulance and transported up to London.

I was now in the position that I was under the care of East Surrey for my emergency admission but the long term treatment of Crohn’s was still with St.Thomas’. At the end of a long and detailed discussion on what my current situation was caused by, whilst the junior doctors listened on, we ended up shaking hands and agreeing that we should do what is best for my long term health. Enough said on this matter, let’s move onto possible diagnosis, tests required and best place to have them carried out. So clearly I was not in a position to think about discharge yet.

The recurring terms he used were primary sclerosing cholangitis (PSC) and portal hypertension. He thinks that these are symptoms of a malfunctioning immune system and are also linked to my thrombocytopaenia (low platelet count) and enlarged spleen. I had thought that this last condition had been brought on by the use of Azathioprine but he was sceptical at this.

After the ward round was complete I called one of the junior doctors over and asked how to spell “that primary thing the consultant mentioned” so I could look it up. She replied that it might not be a good idea at present. I decided to park the research for the day but happened to mention it to my sister who immediately looked it up and rang me back. It was all a little scary. Ultimately, if PSC was diagnosed, the long term prognosis – liver transplant! The only way of getting a definite diagnosis would be to carry out a liver biopsy.

With regards to where the tests should be done and the subsequent treatment – I’m not sure what we concluded. I think that we agreed that due to the complex nature of my Crohn’s I would be better remaining under St.Thomas’ as they have more extensive facilities than East Surrey. I wouldrevisit this subject tomorrow on the ward round.

I try to keep a cool head at all times and remain rational so I thought I’d taken the above information in my stride but a little voice at the back of my head kept saying “you’re only keeping calm because you don’t understand the full implications of what you’ve just been told”. When I caught sight of the IBD Nurse I asked her if she could answer some questions, including what were all the long words the consultant were using. She could tell by some of my questions that no one has ever sat down and gone through some of the basic concepts of Crohn’s and its implications.

I got to thinking about this later and she had hit the nail on the head, one of her many skills! (which also includes an encyclopaedic, some might say Wikipedic, knowledge of medical terms and conditions).

No one has ever talked through the bigger Crohn’s picture. For years I thought it was simply an inflammation that caused diarrhea and some pain for which you took steroids. Some years later I ended up with a stricture so I was then aware of another possible complication. The results of the CT scan that I had done three years, or so ago, then introduced me to the concept of fistulas and having to have a stoma. It would be good to be able to spend some time talking this through with a specialist and understanding other possible symptoms and potential effects on other parts of the body. Ultimately I would like to get a clear understanding of the likely effects on my potential life expectancy or quality. I could then use the information to decide when to retire. Maybe I should talk to an actuary.

Back to the ward – it was decided that I should be given another 2 units of blood. Since I hadn’t had any for a week they needed to do another “crossmatch” as they only last 7 days. (All part of ensuring you get the right blood type).

Wednesday 6th June 2012 – that must have been the quietest night so far on the ward. I slept until about 3:00am but then couldn’t get back to sleep until around 7:00am.

The phlebotomist turned up to take more blood samples and she was followed by the registrar and junior doctors on their round. I had quickly made a list of things to ask them – the top question was “plan for escape”.

I was somewhat taken aback when the Registrar said that as long as today’s blood test showed an Hb of over 10 then I could go home. Today! I really wasn’t expecting that. I had told everyone I was in until at least the weekend or possibly would be transferred to St.Thomas’. I’ve now had to wait until around 1 o’clock for my score.

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

Thursday 7th June 2012 – back home. My first good night’s sleep for 10 days. Time to take stock. The discharge letter made interesting reading but took a fair amount of translation. The bulk of it listed what they didn’t find so I was rather confused as to what I have actually got wrong with me. The only definite observations were an enlarged spleen and a gallstone.

I read through the leaflets that came with the new drugs. They’d given me – Propanolol – a beta blocker used to prevent stomach bleeding in patients with high blood pressure in their liver or swollen blood vessels in their gullet; and Omeprazole – a proton pump inhibitor to reduce the acid in one’s stomach. Reading through the possible side effects of these two drugs I could end up with insomnia and nightmares. Fingers crossed.

…and since then? – I was put under the care of a liver specialist and underwent a liver biopsy to check for cirrhosis. The result showed mild stiffening, something to keep in mind. I now have yearly visits to the endoscopy dept to check out the varices. If they have regrown then the first visit is followed by another two or three when they “obliterate” the veins with rubber bands. Next visit January 2017.

I inevitably turned to the internet. The first page I found, when I searched for PVT and Crohn’s, started with the words “if the patient survives….” Another one said “inevitably fatal”. Not a good start and I was only partly comforted by realising that the articles were written many years ago and by hoping that treatment must have moved on leaps and bounds. If I was to suffer another major bleed from the varices it’s a question of how quick I can get to a hospital and have a transfusion.

It’s like living with a timebomb.

You need an operation

This is an extract from the chapter that covers the immediate period before major surgery for a stricture in my terminal ileum.

Friday, 8th October 2010 – X MARKS THE SPOT

My final visit to St.Thomas’s, as an outpatient, before the operation. I had to visit the stoma nurse in case I ended up having to have a bag fitted. Obviously I was hoping that it wouldn’t happen but you need to cover all the bases. As the saying goes ” Sh*t happens”, and it’s quite relevant in this case!

We started by discussing all the implications of being stoma’d. She told me they were not that difficult to deal with and it should only be for 6 months. She then looked at my physique (= bulges) and how I wore my trousers so she could position the stoma in the optimum place. Once she was happy with the location she marked it. I now had a large black cross on the right side of my abdomen, marked with indelible felt pen and covered by a waterproof sticker. I was still hopeful that it would be intact after the operation.

X marks the spot
X marks the spot

I told the nurse that I intended to keep my blog going whilst I was in hospital. She looked rather sceptically at me and said that for the first few days I would have an attention span of about 5 minutes and it was unlikely that I would feel like doing anything. She was partly right.

I asked what time my operation was likely to start. Surgery usually began at 8:00am but until they saw the full list of operations they wouldn’t be able to tell me where I would be in the sequence. They might have a better idea when I was admitted on the Sunday. When we saw the Enhanced Recovery Nurse the previous week she said that the surgeon likes to do his “interesting” patients early morning and that I was one of the “interesting” ones. It brought to mind the Chinese saying/curse “May you live in interesting times”.

From then on it was just a waiting game until Sunday when I would get the call telling me which ward I needed to report to.

Saturday, 9th October 2010 – LAST DAY OF FREEDOM

The last full day of being able to drive for at least six weeks so we decided to go out for the afternoon to see the autumn tints at the National Trust’s Sheffield Park Garden.

In the evening I made a final list of chores that needed to be completed the following day before I got the call from St.Thomas’s telling me which ward to report to and when they wanted me. I decided to see just how far down the list I could get. I was under strict instructions not to leave home until the hospital had rung but had been assured that they would find me a bed and that the op would go ahead on Monday unless the surgeon fell off his bike again. Since he had done that last year they were hoping he had learned his lesson.


Sunday, 10th October 2010 – THE WAITING GAME

I always knew that this day would be the worst in the process so far. The admission letter told me not to leave home until the hospital had contacted me with the name of the ward I was to report to and at what time.

All the chores were completed in the morning and then we waited for the call. It got to half past two and the tension was just too great so I rang the ward I thought I was being admitted to. Rather worryingly I was told that they had no record of me but would do some ringing around and let me know what was happening.

About 10 minutes later I got a call to say that there wasn’t an available bed in Page Ward but I would be expected in Howard Ward instead. They would call me back to confirm when I was needed. We had a quick look at the St.Thomas’s website and couldn’t see Howard Ward listed. More worry.

I then got a call from Howard Ward to say that I could come in as soon as I was ready and that I was getting a single room in the Private wing of the hospital but not to get too comfortable as it was for one night only.

This really was the most stressful time for myself and my wife but as soon as we set off for London I relaxed and then became positively chilled out. Unfortunately it wasn’t so easy for my wife. If anything my laid back attitude made those around me more anxious.

Private Room
My private room – one night only

My sister picked us up and took us down to the station and we all boarded the train to Waterloo. We walked up from the station to St.Thomas’ and arrived just after half past four. Howard Ward is on the twelfth (top) floor of the hospital and entrance is via a set of locked doors. It took a while to find someone to let us in and eventually were greeted by a friendly ward sister who showed us to my room. The first impression was “Wow, what a view” as we looked south down the Thames and over to the Houses of Parliament.

Just before six o’clock I said my goodbyes to my wife and sister, wondering, at the back of my mind, if that would be the last time I would see them. I don’t want to sound over dramatic but it was a possibility. Apart from that one doubt I was remarkably calm and collected (and have been so ever since, no matter what my health has thrown at me. I wish I could pass the secret on to others but it simply happened and not as the result of a conscious effort).

The ward sister returned to check my details, blood pressure and heart rate and take some MRSA swabs. Then we were joined by a doctor who stuck a cannula in the back of my hand and took some blood samples. I was allowed to eat up until midnight but after that it was to be fluids only. My dinner arrived and I ate it whilst watching the river traffic passing up and down the Thames. Mainly pleasure boats packed with people for an evening cruise, taking advantage of the autumn sunshine.

Howard Ward
Ready for dinner

When I had finished my dinner I was connected up to a drip and told to expect another visit from a doctor around 11:00pm.

Once you’ve been operated on they like to get you down into the main surgical wards as there are more staff around to keep an eye on you. I still didn’t know what time the operation would be and wouldn’t be able to find out until the surgeon arrived in the morning.

I took the opportunity to spend the next few minutes chilling out, watching the sun set over the River Thames. The next update to my blog would be after the operation. It would probably be at least Tuesday before I would be in a fit state to type further entries.

Into the unknown……..but what a view.

Thames - Upstream from Howard Ward
The view from Howard Ward – looking upstream towards Battersea

Monday, 11th October 2010 – PRE OP

I was amazed that I managed to get some sleep. I was woken up at 2:00am by one of the nurses to connect a new drip and then went back to sleep. The next time I woke it was a glorious autumn morning. One of the house doctors came in, introduced himself and explained I was the last on the list for surgery as I was the most “interesting” and they didn’t know how long the operation would take. He answered any questions I had and then went off to the operating theatre. I was given DVT stockings and a surgical gown to put on. I lay on the bed watching the sun rise over Millbank.

It's a beautiful day
The sun rising over the old part of St.Thomas’

I was then visited by the anaesthetist. He said that it looked like I would be going down to theatre at 11:00am and it could be a 5 hour operation. There were some formalities that he needed to run through which revolved around risks and consent forms. He explained that they intended to use an epidural for pain control. Whilst this had proved very effective there were a number of risks involved. He went through each one in turn and gave me the probability of each occurring. At the end of it I signed a consent form that confirmed I understood the risks and I was prepared to go ahead with the operation.

IBD Tests and Procedures

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. Once I was “full” the instruction came “to try and to hold it all in” whilst the tube was removed and the x-rays taken. Just writing this I am clenching my buttocks as I remember that feeling of the tube being gently withdrawn and then it’s all down to muscle control.

Once the x-rays were taken, 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

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.

COLONOSCOPY

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 – Tuesday 19th June 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)

Procedure Day – Wednesday 20th June 2012

COLONOSCOPY (AGAIN)

Preparation Day – Wednesday 19th December 2012

The day before the procedure and this is when the serious “prep” starts. You’re allowed a light breakfast then only liquids such as fruit squash and Bovril. At midday there are 4 senna tablets to swallow. At 1 o’clock it the first sachet of Citrafleet (sodium picosulfate) mixed with 150ml of water. It doesn’t taste that bad and quickly takes “effect”. That’s the “effect” that stops you from straying very far from the toilet! When it gets to 5 o’clock it’s time to take the second sachet and that’s it.

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 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”.

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

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.

Instruments of Torture
Bone marrow biopsy slides

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.

Bone marrow core

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)

one 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 the as long as she could get a good core sample then the quality of the liquid samples wasn’t important.

Time for the coring needle, which 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.

Bone marrow core sample

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.

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.

My next Upper GI endoscopy is planned for 18th December 2018 9a nice Christmas treat). It will be the number eleven.