Category Archives: colonoscopy

Plan for the Worst, Hope for the Best

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

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

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

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

The day of the scoping arrived. By 10:30 I was wristbanded and cannulated. I went off to change into a pair of very stylish paper boxer shorts  with a velcro flap up the back. Once I had donned  hospital and dressing gowns it was into the male waiting area until they were ready for me.

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

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

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

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

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

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

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

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

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

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

Endoscopy Report

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

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

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

Do you mind an audience?

Gastro Appointment – Guy’s Hospital – 20th February 2017

I knew this was going to be an “interesting” consultation and it even started in a strange way. Would you expect to be greeted by a live violinist in the waiting room? Whilst I applaud the hospital for trying something different I’m not sure what it did for other patient’s stress levels. It didn’t help mine.

Having been waiting for over an hour a nurse appeared and announced the clinic was running 90 minutes late. Maybe she had made an earlier announcement but was drowned out by the violin. I knew I would be in for an even longer wait as I had requested to see my usual Consultant.

When I was finally shown into his room, he apologised for the delay and we started working through my list.

1 – Calprotectin result – previously 512. Had now risen to 895. I thought this was not unexpected as I was starting to feel a certain amount of pain when food passed across my anastomosis and through the transverse colon.

2 – Dependent upon the above – have you discussed further investigation? Barium enema? We had agreed before Christmas that, dependent upon the calprotectin result, further investigation could be needed. He favoured doing another colonoscopy.

3 – Run through the last follow-up letter with translation. What are implications of fistulas and adhesions?  We went through the letter and made sure I understood the medical terms. I was concerned that the mention of fistulas, strictures and adhesions meant only one thing – surgery. He responded that the possibility of fistulas was the most concerning; adhesions were to be expected but he was still was struggling to understand the apparent differences between the MRI and what he had physically seen during the colonoscopy. Strictures should have appeared on the camera.

I asked if it was possible for the Crohn’s to have moved from my small intestine to my colon. He said that it did not usually happen. A repeat colonoscopy would look for this. He asked if I minded having an audience as they were running a visit for ten overseas gastroenterologists to show how endoscopies were carried out at St.Thomas’. I really wasn’t fussed and it meant that I had the date set there and then. (Wonder if they will film it for YouTube. Would be taking selfies to another level).

4 – Plan for treatment – start Crohn’s medications. The most likely treatment would be one of the “MABs”. We discussed my previous experience with Infliximab and that was duly noted on my medical file. I wondered if I ended up needing regular infusions whether these could be carried out locally rather than needing a trip to London each time. He said they would encourage that but would still keep control of my case.

5 – Recent trip to A&E with jaundice. Violent shivering. Nausea. Turning yellow. Ultrasound scan 21st February. Need to make sure results are passed on. I quickly ran through my recent trip to our local A&E. He was surprised that during the whole incident I felt no pain. I mentioned I would be having an ultrasound scan the following day. (See below)

6 – Did East Surrey liaise with St. Thomas’? Did blood test results get passed over from East Surrey? There had been no contact with East Surrey. Something for me to chase up when I went there for the ultrasound.

7 – Hb looked low to me. He was not concerned about my Hb

8 – Do the treatment pathways change with age ie. over 60. Have any studies been done into the needs of the “older” patient? The main consideration would be the type of drugs used and their effect on an immune system that weakens with age.

9 – Opportunities for doing some more public speaking. Taking year off of work, maybe longer. There were plenty of opportunities. The danger would be becoming overused! I explained that I wanted to do something that would help the cause of Crohn’s patients.

10 – Not felt well for last 2 days. ED. Taking more Loperamide to try and combat. Have any patients reported that Loperamide from different manufacturers having varying levels of efficacy? I had been suffering bouts of having to rush off to the bathroom and it was the uncertaintity of the cause which I struggled with – virus, crohn’s, BAM or dodgy food. He suggested that I should go and see my GP to arrange a prescription for Questran (a bile acid sequestrant) so that it was available should I decide to start taking it. I had wondered if it was possible that different Loperamide makes could be causing my present problem? This rang a bell. He suggested I put it to the test by using the different makes in turn and noting the outcome.

I then went off to find the Endoscopy section to try and pick up the colonoscopy prep but would first need a time and date for the procedure. After a lot of ringing around the very tenacious nurse managed to get it all sorted out. Colonoscopy planned for 10:00am Saturday 11th March. The Endoscopy Unit were currently reviewing how the prep would be dispensed so I was given a prescription to take down to the Outpatient Pharmacy.

Roll on 11th March……

Ultrasound Scan – East Surrey Hospital – 21st February 2017

In complete contrast to yesterday’s delays, I arrived at the Imaging Unit early, waited five minutes and was then shown into the ultrasound suite.

They had the luxury of warmed lubricating gel! The scan took around 10 minutes during which I discussed with the sonographer what I would expect her to see – a large gallstone (first seen in 2014) and an enlarged spleen. At first the gallstone wasn’t apparent but when she applied the scanning head from a different position it appeared, except it was now a group of small stones. She wanted to see if they were mobile so got me to stand next to the US unit and then jump up and down. (I’m pleased they don’t get you to do this during a colonoscopy.) The stones had moved to the bottom of the gallbladder. The whole procedure was completed before my due appointment time.

I mentioned that I needed to get a copy of the report sent to my consultant at St.Thomas’. The sonographer asked me to return to waiting area and she would print off a copy of the report for me to take away.

Next steps

This is the follow-up post to “Where do we go from here?” posted on 3rd December 2016. (…and my record for future reference….)

Gastro Appointment – Guy’s Hospital 12th December 2016

As the date for the appointment drew closer my stress level increased. Not from the potential medical implications (though some might doubt this!) but the pure logistics of getting to London by 10:20am. It shouldn’t be a problem until you realise we have to rely on Southern Rail actually running a train. As it turned out my train was exactly on time but afterwards there were no more heading to London for 2 hours.

Having arrived at Guy’s Hospital with five minutes to spare I was greeted by a nurse who explained that the clinic was running 45 minutes late. I asked her to put a note on my file that I wanted to see my usual consultant (the top man). The wait increased to just over an hour when I heard my consultant calling my name. TIme to see if there were some answers. I produced my list of questions/comments.

We started out by discussing the outcome of the MDM. Had they been able to reconcile the apparent contradiction between the colonoscopy results and the MRI scan? No, they were at a loss to explain the differences.

The MRI report noted a 100mm stricture in the transverse colon and another in the ascending colon. Neither had been apparent from the scoping. The scan also showed adhesions, one of which was between  intestine and bladder. This could potentially lead to a fistula developing between the two. The tell tale sign would be gas when passing urine. That was a new one on me and certainly not something I had experienced so far.

The word that worried me was “fistula” but he pointed out that it was a possibility not a certainty.

The options left were to repeat the colonoscopy, or the MRI scan, but a barium enema, which is a test designed to look at the colon, would be preferable. (Not sure for whom. I still remember the last one over 30 years ago.) Rather than going straight to another procedure he suggested that we carry out a calprotectin test and if the result was the same or higher than last time (512) then it would be time to start practicising the buttock clench, so vital for the enema.

He asked how I felt generally. My answer was “very well” apart from every 10 days or so getting an upset stomach for half a day then back to normal. There was also an incident when I seemed to be leaking fresh blood but it only lasted a day and I concluded it was purely mechanical, maybe a burst blood vessel. He agreed with my conclusion.

I explained that I was keen to remain drug free having been taking no Crohn’s medication since 2010 (post-ileostomy). Was that an option with mild inflammation? Yes. The aim would be to start treatment early enough, to avoid surgery, should the inflammation worsen. (The knife is always a threat though). In line with my aim of not taking any new drugs I hadn’t been to see my GP about starting Questran for Bile Acid Malabsorption. I would remain on just Loperamide and adjust the dosage accordingly.

The one question I forgot to ask was “Does my reaction to Azathioprine (bone marrow suppression) suggest that some of other common drugs may be unsuitable?” That will have to wait for the next appointment.

I would be having my annual upper GI endoscopy at St.Thomas’ the following week and was wondering if we should also be monitoring my liver for stiffening (PSC). He said I should ask the endoscopist as it was their specialist area. The visit would also give me a chance to drop off the calprotectin sample to the path lab. I would then need to email my consultant in mid-January to get the results. Fingers crossed for <512. Clench.

At the end of the appointment I mentioned that I had eliminated a major element of stress by no longer commuting to London and have virtually retired. As I now had time in my hands I would be keen to do something for the IBD Community.

What is so nice about these appointments is that you never feel rushed. Every question gets a considered answer and all decisions are made jointly. Excellent.

After the appointment it was off to have lunch with a fellow IBD sufferer and then on to meet up with an old colleague for a coffee before attempting to get a train home.

Where do we go from here?

At the moment it makes a change to write a post not connected to the #HAWMC (Health Activist Month Writer’s Challenge) that I’ve just completed. Having said that, there is still a link because I have mentioned in a couple of those posts that I find blogging therapeutic. It helps me to be objective and get things straight in my mind.

This post is therefore primarily for my own benefit but any thoughts/comments/questions welcome.


I’m off to see my gastro consultant at Guy’s Hospital in just over a weeks time (12th December). I’ve already started getting my list of questions ready but I want to make sure I capture all the relevant details. I’m expecting us to agree next steps given my recent test/procedure results.

Since my reversal operaion in June 2011 I’ve been taking no Crohn’s drugs at all and everything has pointed towards me being in clinical remission. I really don’t want to take any more medication than the current Omeprazole, Propranolol, Loperamide and iron tablets  that I am on for PVT (Portal Vein Thrombosis).

When I my consultant, almost a year ago I said “I feel fine. I can’t see why we shouldn’t stretch these appointments out to yearly intervals.”  I don’t know exactly how long it was before I started to regret it, probably about three months, as the bathroom dashes had returned. As ever, with IBD/Crohn’s, it’s not easy to pinpoint what has caused the change and now that I have the addition of Bile Acid Malabsorption to consider it makes it even more difficult.

I tend to discount stress as I like to think I manage it quite well. At that time I was commuting to London, or more precisely Canary Wharf, and the travelling was always unpredictable, mainly due to the truly appaling service provided by Southern Rail and the frequent RMT strikes. To be sure of getting a train meant getting up at five o’clock in the morning. Maybe stress did play its part this time. My wife has said I seem a lot more relaxed now that I’ve given up work. (I decided to semi-retire at the beginning of November but I’m open to offers for short term assignments.)

The upshot was that I emailed my consultant and explained the problem. He suggested a calprotectin test (stool sample) and we would decide what to do next depending upon the result. After three weeks (28th May) the test report came back showing a considerable jump upwards to just over 400, suggesting active inflammation.

A colonoscopy was arranged – 13th July – and the finding was “ongoing mild colonic crohn’s disease. No evidence of crohn’s recurrence in the neo-terminal ileum.” The previous scoping (February 2015) noted “mild, patchy erthema (redness) throughout the colon” but concluded “quiescent (inactive) crohn’s disease.”

Because a colonoscopy can only just reach into the small bowel an MRI scan was booked  to look at my small bowel. I didn’t have to wait long – 29th July with a follow-up appointment on 5th September to discuss the results. Suprisingly, the MRI showed a stricture in my colon even though the scope didn’t. Very strange. This conundrum would be put to the Gastro Dept’s next MDM (Multi Disciplinary Meeting).

The MRI scan also showed adhesions, which are usual after surgery, but I would like to know a bit more about locations. I’ve been getting an ache around ny anastomosis for a number of years but it seems to be worse in the last week or so. This may be down to lifting a couple of “heavier than they looked” objects. Yes, I know it was stupid but male arrogance etc…..

I’m intrigued to know how the MDM reconciled the apparently contradictory colonoscopy and MRI scan results? I would have thought the camera results would take precedence. I also need to understand if the adhesions, on the scan, are just confined to my rejoin (terminal ileum). We’ll talk about their conclusions on 12th December.

We also discussed the large jump in calprotectin level and he asked me to repeat the test to check whether this was a rogue result. Unfortunately the result, when it came back, was even higher.

Looking at the calpro graph it’s apparent that somewhere between November 2015 and May 2016 the inflammation restarted.

calproI mustn’t forget to mention that a few weeks back I was having a “do I call an ambulance” moment when I started loosing some blood from where the sun don’t shine (no, not Manchester). I concluded that due to the fact it was bright red it must be very fresh and the result of surface injury and did not warrant 999. By the next day I was fine again.

Over the last few weeks my digestive system seems to be back on an even keel so is it possible/advisable to continue without medication even though mild inflammation is present? Is any damage done by not taking medication for such a long time? Does the calpro trend suggest that the inflammation is getting worse? I have noticed that I can sometimes feel the action of peristalsis across my middle which I’m assuming is matter passing along the transverse colon. Maybe this ties in with the mild inflammation.

I will mention that I have not talked to my GP about Bile Acid Malabsorption as my digestive system seems to have returned to normal with just the odd blip every 10 days or so. Is this return to normality as a result of no longer commuting to London?

I’m booked in for an upper GI endoscopy on 21st December to monitor the growth of varices in my esophagus.  I’m wondering if we should be doing any further monitoring of my liver to look for worsening of the cirrhosis. Add it to the list.

I just need to turn the above into a succinct list  and I’m ready for the appointment. I just hope the newly announved ASLEF ovetime ban doesn’t stop the trains from running.

It should be an interesting session on 12th.


Testing Times

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

Can I have my life back?

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

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

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

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

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

As a result my consultant gave me the choice of starting Azathioprine or having surgery. Even though it was 20 years since my last stay in hospital I really didn’t fancy another one. There were other factors such as our lifestyle. A major operation and the associated recovery period would have put a stop to all our plans, so I chose the drug route.

BARIUM ENEMA – Mayday Hospital – 1998

I haven’t had one of these for a long, long time. I thought they had probably been phased out by the introduction of CT and MRI scans but I asked the question on the CCUK Facebook page in August 2014 and several people confirmed that they are still used.

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

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

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

The procedure was planned for 3:00pm so I went into work as normal. In the morning I had told various colleagues that I wouldn’t be around after lunch and explained why. Every single one of them uttered the same 3 words “that sounds painful”. After you’ve heard it for the umpteenth time a few nagging doubts set in. The previous week I had asked the haematologist if it hurtto which  she replied “you’ve got Crohn’s and had surgerys. You’ve dealt with pain! This will be nothing by comparison”

I checked in to the clinic and waited to be called. A nurse came over and gave me an identification wristband as the procedure would be carried out in the Day Hospital section. She said that I shouldn’t have to wait too long.

It was around 3:30pm 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.

She showed me into a treatment room. I took my shoes off and then lay on my right hand side on the bed. She explained what she was going to do, where the needles would be inserted and then did the usual risk assessment talk. There was not a lot that could go wrong as the needles go straight through the skin into the hip bone and nowhere near any vital organs. I signed the consent form and we were ready to start.

I asked how long it would take for the results to be available as my follow-up appointment was planned for mid-December. She replied that they should be available in 4 or 5 weeks and they would contact me if anything untoward showed up. I asked to be informed even if nothing showed up as I didn’t want to wait until the appointment to find out.

She asked me to pull my knees up to my chest and adopt a foetal position. She felt around to find the best location for the needle and then 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 first set of injections was working so I felt very little. A few minutes later it was time for the first sample needle to be inserted.

The biopsy needles
The slides

The aim is to get a liquid sample that can then be spread onto microscope slides for an initial examination within the department. She was having problems getting a good sample that wasn’t contaminated with blood as it kept clotting (which goes against what you would expect from low platelets). Because I was tolerating the needle so well she took some more samples but explained that the as long as she could get a good core sample then the quality of the liquid samples wasn’t important.

Time for the coring needle, which is quite a bit larger than the previous one. If you’ve ever seen one of those food programmes about cheese no doubt there will have been a scene where the cheese-maker inserts a tool into the cheese and pulls out a nice sample. Same principle here!

It takes a fair amount of force to push the larger needle through the outer layer of the bone. I could certainly feel it as it went deeper in. It wasn’t so much pain as a dull ache that traveled into the leg. After a couple of minutes of pushing the needle into the right depth it was withdrawn and the sample released. She was very pleased with the resulting core and set about dressing the puncture wound.

Bone marrow core sample

I then had to lie on my back for 15 minutes whilst the blood clotted and sealed the wound. I was told that a nurse would come and tell me when I could go. After 20 minutes or so she came in and looked at the wound. It was fine so back on with my shoes and down to the station to catch the train home.

The procedure room

Throughout the procedure we talked about low platelet counts, possible causes, what the tests would show, the fact that my red and white cell counts were normal, my Crohn’s history, empowered patients etc. It was very informative and kept me at my ease.

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.

CALPROTECTIN – I’ve only kept this one in for completeness. The procedure is very simple – collect stool sample; take to path lab; wait 10 days for result. Research has shown there is a good correlation between the calprotectin result and what would be seen by a colonoscopy.


Preparation Day – Tuesday 19th June 2012  No eating after a light breakfast. At noon you drink 50ml of senna pod liquid. This is followed an hour later by a sachet of sodium picosulphate dissolved in 150ml of water and then again at 5:00pm. The camera has to have a clear view of the gut wall so you can guess the effect of these drinks. Once you’ve started drinking these liquids you don’t stray far from the house.

Procedure Day – Wednesday 20th June 2012
– the day of the colonoscopy. Having not eaten anything since yesterday morning at 8:00am the hunger got really bad. I was allowed to drink water up to 3 hours before the procedure.

The Shard with Guy’s in the foreground

Got up to Guy’s Hospital nice and early for the 1:30pm start time. I was accompanied by my wife as they will not carry out the test unless you have someone to see you home safely.

By 1:40pm I was changed into a surgical gown ready to go. My blood pressure was then checked and I was asked questions on allergies etc. I was taken to a waiting area and was there about 30 minutes when I moved on to a corner of the recovery room where I had a canula inserted into the back of my hand and then I waited some more. At 2:30pm I was told that an in-patient was going in in front of me but only for a 5 or 10 minute procedure.

Finally at 3:00pm the doctor came and sat down to talk through what he was about to do and get me to sign the consent letter, then we were off to the procedure room. I asked to have minimum sedation as I like 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 told that the MRI scan at the end of April suggested that the Crohn’s had flared up again in both my large and small bowels and that 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 explained that I wanted to be conscious so I could watch the monitor and was only given a mild sedative. I was told to lay on my left hand side, with my knees drawn up, and the camera was stuck where the sun don’t shine.

It all started OK but there was no sign of any inflammation. A real surprise. The camera continued on its way but then reached 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 then got the nurse to push hard against my abdomen to try and ensure everything was lying flat. He tried getting me to lie on my back. Nothing worked. There’s never been a problem in the past so I don’t know what went wrong this time. The “camera experience” lasted about 50 minutes. The amazing thing is that, so far, I haven’t been able to feel any after effects.

I was hoping that the lead consultant was the one carrying out the test as it would give me the opportunity to discuss the way forward with both the Crohn’s and the new problem, bit I didn’t see him.

It looks like I will need to have the colonoscopy repeated by with another, smaller camera. There is a test that can be done on a “sample”, called a calprotectin test , which gives a good indication as to whether Crohn’s is active or not. Maybe they will opt for this rather than another camera job. The other alternative is a capsule endoscopy where you swallow a small capsule camera that transmits pictures of your digestive system as it passes through. The pictures are picked up, wirelessly, on a receiver worn around your waist.


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

Thursday 20th December 2012 – Procedure Day. An early start to get to Guy’s Hospital for 8:30am. My train was a little late so I checked in just after half past and sat in the waiting area. About 10 minutes later one of the nurses asked if anyone was waiting to have a colonoscopy and 3 of us raised our hands. The other 2 had 8:00am appointments so they were seen first. At 9:00am I was taken into the changing area and given a hospital gown to change into. Then the obligatory questions – “are you allergic to anything?” “what tablets do you take?” etc.etc.

I then went and sat in the recovery area and finally went into the ward to be fitted with a cannula. By now it was just gone 9:30am. I was pleased to see the friendly face of my lead consultant appear. 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 in July and the fact that it wouldn’t go round one of the bends. The other thing I mentioned were the side effects of the dexamthasone that I had been on to try and boost my platelet count. I told him about the hiccups and the change of personality. He hadn’t heard of hiccups being a side effect but the mood swings were a well known effect of steroids. He remembered one patient who had been started on a high dose of prednisolone and the next morning had climbed under her bed and refused to come out!

It wouldn’t be long before I would be lead into theatre.

Actually it was another 30 minutes, in which time I was canullated. I think the delay must have been due to complications with the previous patient as I recognised her as the one who was being seen just before me and she had certainly spent a long time in theatre.

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 wuth my knees drawn up. The doctor injected doses of Fentanyl (a powerful synthetic opiate analgesic similar to but more potent than morphine), Midazolam (a water-soluble, short-acting benzodiazepine central nervous system depressant and Buscopan (a medicine which is used to relieve spasms of the gastrointestinal tract). You’d think that this cocktail of drugs would knock you out but no, you remain fully conscious. You do have to be escorted home and are not allowed to drive.

I was asked if I wanted to keep my glasses on and I said “Yes” so that I could watch the action of the monitor. Sharp intake of breath and the camera started it bendy journey. It made slow progress but by careful guidance, and some shifting of my position, it made it beyond the bend OK. Unfortunately the image capture wasn’t working properly so the Endoscopy Report is not worth showing. The camera made it all the way to the anastomosis (the rejoin between large and small intestines following the reversal operation in June 2011).

So what did we see in glorious living colour on a large screen – NOTHING. Or rather nothing out of the ordinary. No signs of active Crohn’s Disease at all. Nada. De Rien. Nichts. This is the result I was hoping for but didn’t really expect. It was really a repeat of the colonoscopy result from a year ago and I’ve got a Rutgeert’s score of i0. Follow up appointment – 6 months time.

One reason for requesting this colonoscopy was because I’ve been getting an ache in the vicinity of the anastomosis. It’s clearly not from inside the gut so may well be caused by adhesions. I don’t know what the implications are and it’s the one question I forgot to ask.

CT SCAN – East Surrey Hospital 2009

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

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

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

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

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

FIBROSCAN – Monday 12th November 2012 – St.Thomas’

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

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

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

FLEXIBLE SIGMOIDOSCOPY – just like a colonoscopy but with a smaller, shorter endoscope

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

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

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

We had an early start. It must have been the coldest night of the winter so far, minus six. So down to Redhill for the train just before 8:00. Now I know why I commute earlier than this. The train was stuffed full, no seats free.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The results weren’t available straight away as they had to be interpreted by an MRI radiologist. Would have a three week wait before I saw my usual consultant.

MRI SCAN 2 – 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. My appointment was at 10:00am and the letter said to be there 15 minutes before that time. I checked in at reception and was given a questionnaire which asked about medication, recent operations and any implants you might have. I filled it in and only waited a few minutes before I was shown to a cubicle and asked to change into a hospital gown.

I was then taken into the imaging area and a cannula inserted into my left arm ready for the introduction of a marker dye later in the process. When that was in place I was shown into the scanner room and asked to lie down on the scanner trolley. Once in position I was connected up to the dye injector and given a pair of headphones to wear as this is quite a noisy procedure. You are also given a push button in one hand so you can alert the radiographer if you are having a problem. (A radiographer is the person who operates the machine; a radiologist is the doctor who interprets the results)

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.

Once the radiographer is happy you are in the correct position the scanning sequence starts and they give you instructions via the headphones. The main instruction is to breathe in and then half breathe out and hold your breathe. Because I knew what to expect I found this a lot easier to cope with than before. Some people get claustrophobic in the scanner but I suppose it depends on the size and length of the tunnel of a particular machine. I had no problems with this. The tunnel was relatively short and you could always see out both sides.

The whole procedure lasted about twenty minutes and was slightly less noisy that the St.Thomas’ machine. 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.

The radiographers can see the results in their control room so that they can make sure they are capturing the images required but the actual interpretation and report is put together by the radiologist and takes around 7 to 10 working days. I have an appointment with my consultant on Monday week (16th July) so they should be ready for that.

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

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


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

We had quite a long wait before I was taken into the treatment area. The problem was that the earlier patients were taking longer to come round after their procedures and there were no spaces in the recovery area. Eventually it was my turn.

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

She went through the risks associated with the procedure and got me to sign the consent form. I then had a cannula inserted in the back of my hand and I was ready for the procedure. After a few minutes I was wheeled into the testing room, had a couple of squirts of throat numbing spray (xylocaine – tastes of burnt bananas) 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.

Here’s a copy of the endoscopy report. I think that the top image shows the varices halfway down my oesophagus and then the bottom image shows two that have been banded

Endoscopy Report

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

That night I was aware that I was losing a little blood, which I suppose was only to be expected, but it did lead to a sleepless night worrying about whether we should still go out to all the places we had planned for the rest of the week. In the end I came back to the “I will not let Crohn’s rule my life” attitude and decided we should go whatever.

VARICEAL BANDING 2 – Thursday 27th September 2012 – St.Thomas’ 

 I’ve learned my lesson from the last session – no driving home after this one so my sister picked us up and took us to the station. We arrived nice and early at St.Thomas’ and knew exactly where to go to get booked in with endoscopy reception. Five minutes later I was called in by one of the nurses to go through “when was the last think you ate anything?”,”have you got an allergies?” routine. She then went off to find out how long I would be waiting before the procedure took place. She came back with the good news that there was only one patient in front of me so I could go and get my cannula fitted. I said goodbye to my wife and said I’d be ready for collection in a couple of hours. It was certainly a lot quieter on a Thursday.

I was led to a small cubicle, took my shoes off and laid on the bed. At least with an endoscopy there’s no need to get changed into a surgical gown. Another nurse then put a cannula into my right arm, checked my blood pressure and heart rate and I then waited to be seen by the doctor. In a while the doctor appeared and I recognised her as the one who had carried out the previous banding. She asked how I’d been feeling since the last one and if I had any questions. The one thing I did want to know is why you are only allowed liquids after the banding. I wanted to know if it was purely because it would hurt or if there was a medical reason. She explained that the rubber bands placed around the varices might become dislodged so it was liquids only for the first 24 hours and then 3 days of sloppy diet. I replied that this time I would keep to this advice to which she gave me an “old fashioned” look!

She explained that they would have a look and see how the previous banding had gone and then carry out any more that might be needed. She would book me in for a third session in another 3 weeks time. I was then wheeled into the procedure room and connected up to another blood pressure monitor and an oxygen supply. Then it was the xylocaine (burnt banana flavoured) spray that numbs the back of your throat, and finally a sort of gag is placed between you teeth and this helps to guide the endoscope. It’s the gag that I really don’t like so I was pleased that the doctor injected the sedative straight away with the words “you’re going to feel a little drowsy”.

The procedure started at 11:15 and the last image from the endoscopy report shows 11:29 so the whole thing took around 15 minutes. The next thing I was aware of was waking up in the recovery area and it was all over for another three weeks. I was given a copy of the printout from today’s session and about one o’clock I was allowed to leave. Compared with last time I was in quite a bit more discomfort and was slightly wobbly on my feet.

Here’s today’s endoscopy report. I haven’t actually discussed the images with anyone but I think that Image 1 shows the varices down towards the stomach. Images 3 and 4 show the new bands in place.

Endoscopy Report – click on image for larger version

Before leaving the hospital I called into the Endoscopy Appointments room and asked if I could get a date for Obliteration 3. The doctor had already requested the appointment so I was able to choose a date for 3 weeks time. Given that today’s clinic seemed very quiet I chose another Thursday and it has the added advantage of still being able to go to work for the first 3 days of the week and then spend a long weekend recovering.

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

Friday 28th September 2012 – Have just finished writing up yesterday’s events on this post. I’m finding each time I think about the burnt banana spray and the mouth gag I’m getting a slightly sick feeling in my stomach and at the back of my throat. I need to address this now so that I’m over it in time for the next banding. I surprise myself how laid back I am about hospitals, procedures and appointments so I don’t want to spoil that for the next one.

A little further down the road?

5th September 2016 – Gastro Appointment – Guy’s Hospital – 10:20am

…the story so far can be found in the post “Crying Wolf”

Today’s appointment was to get the results of the MRI scan I had five weeks, or so, ago and then work out the way forward to get my health back on track.

It was the first appointment following my retirement so no chance to just leave the office for an hour to attend. It would need a special trip and chance to suffer the reduced timetable operated by Southern Rail. Having left home in plenty of time I arrived at Guy’s only two minutes before the due time. Almost immediately my name was called for me to be weighted. I had lost around 6 kilos since my last appointment. I asked the nurse to put a note on my records that I wanted to see my usual doctor. “No problem”.

Being weighed allows you into the inner sanctum, the inner waiting area, from where you are collected by your consultant. A student approached me and asked if I would be prepared to take part in some genetics based IBD research. I’m always more than happy to help so he left me a document to read and would talk to me after I had seen the consultant.

The waiting area was remarkably quiet. It’s been jam packed on previous visits and I’ve waited over an hour to be called. I’ve been preparing to give a talk on “Living with IBD” as part of a lecture for undergraduate nurses on chronic conditions. I had intended to do it completely off the cuff but I have come to the conclusion that is unrealistic. I’ve written out what I want to stay and the software has then converted it to speech so that I can listen to it on my iPod. This seemed like a good time to give it another listen.

I was miles away, submerged in the narrative about weight loss and fatigue in IBD, and then realised my name was being called. It was my consultant. I apologised for appearing to be on another planet and we made our way into the consulting room. By now it was 10:50am.

I had my obligatory list of questions with me :

  1. Results of colonoscopy 13th July 2016 – “ongoing mild colonic Crohn’s Disease. Previous colonoscopy” – 25th February 2015 – “mild, patchy erythema throughout the colon, however no ulceration seen”. Has there been a change? Does it need to be treated?
  1. Results of MRI scan?
  1. BAM – could this be causing weight loss etc. Treatment – Questran (low tolerance) Colesevelam.
  1. Blood test organised for 2 weeks. Have asked for cholesterol to be checked

Starting with the 1) it did suggest that the Crohn’s has returned albeit mildly. I mentioned that my last calprotectin level had been elevated – around 425. He called up all my results and drew a graph which showed that the last result did not follow the trend. “Collect a sample pot on your way out and we’ll re-run the test in case that was a rogue value. Let me know when you drop the sample in so that I can keep an eye out for the result.”

I asked about potential drugs to treat the inflammation. (Usually I would have been kept on a maintenance dose of Azathioprine but the onset of thrombocytopenia back in 2008 had made this a non-starter). He explained that there were drugs that specifically targetted the colon that were used to treat ulcerative colitis. He mentioned a form of Budesonide. I have subsequently looked this up and found a NICE document about Budesonide multi-matrix (MMX/Cortiment). It is formulated to release at a controlled rate throughout the colon to minimise systemic absorption. The licensed dose is 9 mg in the morning, for up to 8 weeks. It was licensed in October 2014 for inducing remission in mild to moderate active ulcerative colitis in adults for whom aminosalicylate treatment is not sufficient.

2) What did the MRI scan show? Strictures in my colon but they hadn’t shown up on the colonoscopy. Usually a colonoscopy trumps an MRI scan so this was an unexpected result. He proposed to take the results of both to the next MDM (multi-disciplinary meeting) to try and come up with an explanation.

It also showed adhesions but the fact they existed was not news. Since shortly after my reversal I had been complaining of an ache around the anastomosis .

3) Given the very variable nature of my digestive system and my recent weight loss I wondered if it was finally time to bite the bullet and start taking a sequestrant to treat my severe bile acid malabsorption. I had been fighting shy of taking yet more drugs and have been controlling it Loperamide.

I asked if it would be possible to prescribe Colesevelam (the tablet form) rather than Questran (powders) as I had read many reports of the former being easier to tolerate. I was aware of the cost differential, a factor of 10. He said that for the good of the health service budget I should try the Questran first but this would be a discussion for me and my GP.

4) I mentioned that I had a blood test organised for a couple of weeks time and would send the results through to him. I had asked for a cholestrol check to be carried out.

He would organise my next appointment once the MDM had discussed my results. He then took me back to the student doing the genetic study and I spent 10 minutes answering questions and spitting (saliva into a sample tube).

Where did that get me?

I’ve learnt about the possibility of a new drug to treat the inflammation in my colon and I’ve set in motion potentially directly treating the BAM. I think I’ll leave the decision on that one until my next appointment when we have an answer on colonoscopy/MRI scan conflict.

…and in the meantime an old client has called me up to see if I would be free to do some work for them. Retirement will have lasted precisely 5 weeks…

Crying Wolf

Crying Wolf (or maybe not)

I started writing this post a while ago but for one reason or another didn’t get round to finishing it. (My wife would say it’s a “man thing”). I’m not sure it will add greatly to the body of knowledge about Crohn’s but, from a purely personal level, it allows me to keep a record of my appointments and procedures.

I’m returning to a subject I’ve written about before but this time the effects are worse and have lasted longer, sufficient to make me very concerned.

On 5th May I had an annual check-up with my GP and had pre-empted the appointment with a full blood test. The results came back OK except for lymphocytes and platelets (expected). I emailed a copy to my gastro consultant and mentioned that I had been getting abdominal pain for the last few weeks and rushing off to the bathroom. He replied that I should have a calprotectin test and would have a sample pot sent to me (hopefully).

The symptoms are a pain around the midriff; extreme tiredness – so much so that I can get in from work, have dinner, then collapse on the sofa and wake up at eleven ready to go to bed; but most worryingly, and not wanting to get too graphic in a blog that may be read by non-IBD sufferers, let’s just say the phrase “through the eye of a needle” comes to mind.

I’ve been told told that if you can visualise  pain it is much easier to deal with. Mentally I lined up the suspects. The “upset stomach” could be from :

i) a virus picked up on the train up to London
ii) eating something dodgy (I did eat out in a restaurant in Highcliffe one day and the food was pretty disgusting)
iii) wearing a very tight belt whilst doing a lot of physical work

or the one that constitutes the “elephant in the room” – five years of Crohn’s remission was at an end

Ironically the last time I saw my Gastro consultant I had told him I felt very well and couldn’t see why we didn’t extend the gap between appointments from six to twelve months. I was now regretting it and had started to notice my weight was dropping and the ache around my anastomosis was getting more frequent.

I would have to see what the calprotectin test showed. The sample pot had still not arrived so I took it upon myself to get one from my GP, fill it with the “necessary” and drop it into the IBD Nurses at Guy’s Hospital.

The result came back on 14th June. My consultant emailed “Interestingly it has risen to 436” (previously 179) and suggested that a colonoscopy ought to be the next step. “Would I be OK with that?” Not a problem but I was starting to wonder if I was “crying wolf” as ever since I had dropped the sample in, I had started to feel a lot better. I think this must have been wishful thinking. Something had caused my calpro result to keep rising and my weight was still falling (down to 82kg from a high of 91kg).

The colonoscopy was duly booked – 12th July. I wondered how that would allow my small intestine to be seen. My consultant wrote back  that the colonoscopy would be able to reach just past the anastomosis, the most likely place to find inflammation if it had restarted. If the scope showed nothing then I would need further tests by which I assume he meant a scan. I’m sure he would not want to risk a Pillcam.

This post will continue after (tomorrow afternoon’s) scoping. One more sachet of Citrafleet to take………

The Colonoscopy

I’m not going to describe the whole colonoscopy process, just the things that made this one slightly different and the conclusions.

Firstly taking the prep timing has changed at St. Thomas’. For an afternoon procedure instead of taking both lots of prep solution on the previous day they are now split and the recommendation is to take the second sachet at 9:00am on the day of the procedure. This didn’t seem like a good idea, especially with a travel time of nearly two hours on public transport, I decided to take that second dose at 5:30am and I’m glad I did. It had only just finished “taking effect” at 10:30am when I was due to leave home.

Secondly, and this one would make a good subject for a fashion blog, the very flimsy paper briefs that one previously had to put on have now been replaced with some very stylish dark blue paper boxer shorts with a large slit up the back. Modesty prevented me from taking a selfie and posting it.

For the first time ever the nurse had problems finding a vein for the cannula. After two attempts with my right arm she handed me over to her colleague. Luckily she tried the other arm and was successful.

cannulaOne of the doctors came in to get the consent form signed and I explained that I wanted to keep alert throughout the procedure, so that I could ask questions, and mentioned that my weight was a lot lower than previous scopes. He decided to give me less sedative than usual and that worked fine.

Whilst my main GI consultant watched on, the doctor I had seen earlier started the scoping. As the camera made its way ever onwards it started to show mild inflammation in the colon but when it reached the anastomosis the inflammation disappeared. The doctor decided to see how much further he could get the scope into the small intestine, made possible by my ileocaecal valve having been removed during my ileostomy

Normally I don’t notice the movement of the camera, the air to expand the gut or the liquid used to clean the lens but that final push was the exception. I ended up being asked to roll onto my back which made it a little  easier. Once again there was no inflammation and with that the scope was withdrawn.

The conclusions were : ongoing, mild colonic Crohn’s disease but no evidence of recurrence in the neo-Terminal Ileum (the most likely place for it to reappear following surgery).  My consultant said that colonic Crohn’s would explain the high calprotectin result but he was clearly most concerned about the weightloss (down below 80kg for the first time since before my ileostomy) and sent off a request for an MRI scan.

By 15:30 it was time to leave St.Thomas’, clutching a copy of the report and accompanied by my escort , a fellow GSTT IBD patient who gave up her afternoon to help. Thank you. (I have since been able to repay the favour by agreeing to talk to some undergradute nurses about “Living with IBD”).

On the way out we called into the  MRI unit to see if it was possible to book a date there and then. Unfortunately bookings were done from a different location but the receptionist confirmed that the request was already on the system and marked “Urgent”. I should be seen within 2 weeks.

The Scan

After a couple of days I tried ringing the MRI Unit to find out if they had allocated a date yet, after all, if I was to be seen inside two weeks, surely I would need to be on the schedule by now. Disappointingly the answer I got was that they were working through the bookings “in order”. It didn’t make a lot of sense.

I left it over the weekend then tried again. This time the person I spoke to must have realised the urgency and I was given a date of Friday 29th July, at Guy’s, 12 days from the request going in. I would not need to be accompanied this time as there would be no sedation involved. I then received a letter for a follow-up gastro appointment to discuss the results – 5th September.

The day of the scan arrived. I made my way into the unit. It was newly refurbished and extended and had only been open a few days. The number of scanners fhad been increased from two to four.

You are asked to arrive early as there is a prep solution to drink. I knew what to expect – a thick, lemony liquid with the consistency of wallpapaer paste. I must remember to keep stirring it. But no, it was all change. I was given a one litre bottle of a clear fluid and a glass of water as a “chaser”. The nurse told me to drink a cup of the liquid every 5 minutes. She mentioned that it wasn’t that palatable and she was right. I must have managed to drink about three quarters of the bottle before it was time to be cannularised.

prepFor the second time in 3 weeks the nurse had difficulty in finding a good vein that would take the cannula tip all the way in. On the third attempt, using the other arm, it was finally in place.

I’ve described MRI scans, in detail, elsewhere in this blog so won’t repeat it all here. They are noisy machines so I was rather surprised to have fallen asleep towards the end of the procedure. I think it shows just how tired I have been recently.

A radiologist would interpret the results and have the report ready for my gastro appointment.


Just a routine, 12 monthly Haemo appointment. I didn’t have a list of questions because nothing had changed since my last visit. The doctor called up my records on her screen and said, in passing, “just to put your mind at rest – the MRI scan didn’t show anything unexpected, just some mild stricturing in the small bowel which had been seen before.” Interesting. I wasn’t aware of the strictures. Something to discuss on 5th September. To be continued…..

Crohn’s Disease – DIARY – Starting 2015 Take 2

…and for my next appointments – Endoscopy Suite, Haematology then Endoscopy Suite again. I really could do with a gap year from Crohn’s. This was going to be one of my shorter posts but as I use them for jogging my memory before the next appointment it has ended up with a bit more detail than I had originally envisaged.

Just a quick recap. I’ve had three calprotectin (stool) tests over the last 12 months or so and whilst the first one gave a good result the other two have shown a rising trend suggesting there was inflammation in my gut. My consultant thought it would be prudent to have a colonoscopy as I hadn’t had one for just over two years. Just to complicate matters I’ve been taking Omeprazole which has been shown to give elevated calprotectin levels but I think that’s clutching at straws. If it’s the Omeprazole then why weren’t all the results elevated as I started taking it in 2010?

Recently I’ve been feeling very well. No abdominal pain. No bathroom dashes. Even the ache around my anastomosis has been far less frequent. When in London I’ve been walking around 10km a day for exercise. I was curious to know what the colonoscopy would show. I will admit to being a little concerned as the findings would have a big effect on how 2015 went……

Monday 9th February – St.Thomas’ Endoscopy Suite – they work on the principle that before you have a colonoscopy you are required to go in and personally pick up the preparation tablets/sachets so that they can run through exactly when you need to take them for a “successful evacuation”.

Unfortunately I had a long wait but when the nurse eventually appeared she did apologise. I recognised her from my very first colonoscopy at Guys/St.Thomas’ several years ago.

As an old hand at these things I went prepared with the timings already in my calendar. But no, since the last one I had in 2012, they’ve changed the regime. Instead of taking all the prep on the day before the procedure you now take the final sachet on the morning. I was wondering how that works for the train journey up to the hospital?

The advice leaflet has been rewritten and answers a question I have long wondered about – why do some patients get given 2 litres of Klean-Prep to drink whilst others have 2 x 150ml of Citrafleet? The answer : if the doctors are concerned about your kidneys or you have kidney disease they may choose Klean-Prep or Movi-Prep as these are less likely to affect your kidney function.

..and why do they tell you to avoid drinking red juices or cordials? Something to do with fibre content? No, it’s because they don’t want any residues of red coloured liquid in the gut that could be confused with blood. Obvious really.

As I was leaving, clutching some senna tablets and two sachets of Citrafleet in my hand, the nurse advised me to arrive early as my consultant always like to start on time and it takes a few minutes to attach the wristband/insert the cannula.

Wednesday 11th February 2014 – Guys Hospital Haematology 2 – Not much to say, for a change. This turned out to be a routine appointment and I didn’t have a long list of questions. The obligatory blood test showed all my levels were OK except platelets. No surprise there then. My consultant reiterated her advice “not to get hung up on numbers” ie. platelet count. She repeated her description of my bone marrow as being “a 4 cylinder engine running on only 3” and therefore not delivering the right quantities of platelets. Next appointment – 6 months.

Countdown to Colonoscopy – a brief description of the lead-up to the procedure just in case it might help others who have not experienced the delights before. (Old hands please skip down the page)

Saturday 21st February 2015 – 4 days to go – stopped taking iron tablets. Didn’t make a lot of difference.

Sunday 22nd February 2015 – 3 days to go – stopped taking Loperamide. I wondered how long it would take for the effects of the drug to tail off. Could be an interesting train journey into work tomorrow.

Monday 23rd February 2015 – 2 days to go – stopped eating anything with fibre in ie. fruit, vegetables, nuts etc. Drank lots of fluids. Train journeys to and from London were fine.

Tuesday 24th February 2015 – 1 day to go – worked from home. Light breakfast and then nothing after 9am except lots of fluids. Had a phonecall from Endoscopy Appointments saying that 4 patients had all been booked in for 1:00pm for Wednesday so they were putting me back to 2:00pm. This was a bit annoying as I had carefully worked out who was going to collect me from the hospital after the procedure. Had to rethink my plans.

At 4pm – took 4 senna tablets; at 5pm – took first sachet of Citrafleet dissolved in 150ml of water and stood by for its effect.

Prep then kicked in, yu can guess the rest. Coughing to be avoided at all costs. 

Wednesday 25th February 2015 – St.Thomas’ Endoscopy Suite – at 7:30am took the second sachet of Citrafleet and drank lots of fluid until 11:00am then nothing. 12:30pm down to Redhill Station, which luckily has toilets on the platforms, and then the train journey to Waterloo and a ten minute walk to St.Thomas’. All achieved without a problem. I think next time I will take the second sachet a lot earlier. Suprisingly I didn’t feel that hungry. I know on previous occasions I have been absolutely famished and that was the abiding memory of having a colonoscopy. The procedure itself is a piece of cake (not literally of course).

View from GSTT Endoscopy Suite waiting area

Arrived at the Endoscopy Street at 1:45pm and booked in. At around 2:30pm was still sitting in waiting room when the fire alarm started sounding. One of the nurses announced that it was a fault and there was no need to move. The alarm finally stoppped but it was now gone 3:00pm. My consultant appeared, greeted me and said “I hope you bought something to read with you”. I knew then it would be a lot longer before it was my turn to be scoped. He made some comment about having to leave the building to which I replied “that would have been the second evacuation of the day for me”.

Finally, at 4:00pm, the nurse called my name and it was time to get changed into a surgical gown. I’m pleased I took a dressing gown with me because I can never get the tie-ups to knot properly. A cannula was inserted into my right hand, for a change, and it was off to the pre-procedure waiting area.

Obligatory selfie of cannula

I was the only one in there so at least there wasn’t a queue. A doctor working on a IBD research project appeared and asked if I would be prepared to take part. She would like a blood sample and some biopsies. She gave me a leaflet to read about it and said she would be back shortly with a consent form.When she came back I said that I was happy to help with the research but it was not certain that I would need any biopsies done and that I didn’t want to risk upsetting my gut unnecessarily. I agreed that should routine biopsies be required then she could take additional ones otherwise I would prefer not to. I signed the consent form on that understanding.

Reading material from the waiting room

Shortly afterwards my consultant appeared and explained that he had a young Registrar training with him who was showing a particular apptitude for scoping. Would I mind if the Registrar did the colonoscopy whilst he watched. I didn’t mind, it was just another procedure. Of more interest was how much longerI would need to wait? They were just finishing up. He went off to get a consent form and when he came back was happy to answer a few questions. The main one was “can there be a long period between the calprotectin test showing a rise in inflammation and a flare occuring”. Yes and that’s why they use the calprotectin tests to show if intervention is needed and allow medication to start before the patient is ever aware of any symptoms. It could be described as over treating but it is preventative rather than reactive.

He mentioned he had been interviewed by BBC2’s Newnight on the subject of fecal transplants for combating C diff, for which it had a high success rate, and the discussion had also turned to IBD. He did not know when the report would be shown. He described a fecal transplant as being like giving a giant dose of pro-biotics but it’s use to help IBD patients was still in the research stage. I also asked if the camera did show inflammation was there an alternative to Azathioprine. Yes, there were lots of alternative drugs now available and they worked in a more targeted manner.

Just before 4:30pm it was time to enter the procedure room, quite a familiar environment as I had had a couple of upper GI endoscopies in there last year. There was a team of six, maroon clad doctors and nurses, three of each. I got onto the trolley and had the oxygen feed attached. I was asked to roll over onto my left side and bring my knees up to my chest into the best position for introducing the camera.

Endoscopy Equipment

Did I want sedation? Yes please. The same amount as last time which would leave me sufficiently awake to watch the images in glorious, living colour and ask “what’s that?” as the camera traveled ever onwards. Whilst the sedatives were being prepared I saw the opportunity to discuss Bile Acid Malabsorption (BAM), a subject now close to my heart. I explained that after my operation, back in 2011, I had expected my digestive system to return to normal. I had no knowledge of possible BAM and its side effects (chronic diarrhoea). From the posts I have read on various IBD forums and FB pages many others are in a similar position. It really is a subject that needs much wider awareness within the IBD Community. I’ll keep plugging away at this one.

Time to put the soap box away. Four syringes of sedative injected into the cannula and we were ready to go. It was time to find out what state my guts were in. The sedative had taken away any sense of foreboding that I might have had. After the initial sensation of the camera being inserted I felt nothing. We were all looking at the images on large monitors as the camera started its journey. From that point I cannot remember the the rest of the procedure or asking any questions. I don’t know whether I was conscious but the sedation has dulled my memory or if I lost consciousness so there is nothing to remember anyway. I vaguely recall discussing what we were seeing with my consultant and whether the camera had made it to my anastomosis but it is very hazy. Maybe I’ll ask for a little less sedation next time.

I woke up in the Recovery Room where my blood pressure and oxygen levels were monitored. Once they could see my readings were OK I was allowed to get dressed and make my way to the Discharge Lounge where I was given a cup of coffee and some biscuits. At that point my brother-in-law arrived to accompany me home. I just needed to have the cannula removed and to be given a copy of the report. I was disappointed that the report was in black and white but it did show that there was no significant signs of inflammation. I was given a Rutgeert’s Score of i0. Very goods news and I was free to go. We left St.Thomas’ just gone 5:30pm and walked the 3 km back to Victoria Staion via the backstreets of Westminster.

Cambridge Tower as the sun sets
Cambridge Tower as the sun sets

Whilst I was having dinner I re-read the colonoscopy report and it struck me that it wasn’t very clear. I emailed my consultant asking for clarification :

“Please pass my compliments on to your Registrar as he drove the camera very well and I have felt no after effects. I think the sedation must have taken over at some point because I don’t remember asking how what you saw on the scope squares with the rising calprotectin values. Also having now got a copy of the Endoscopy Report I’m puzzled by the first sentence in FINDINGS. Should “with” read “without”? Was there anything unusual at the anastomosis?”

The next morning I received a response :

“Oh dear – that’s not the best written report. I will get it amended. Apologies
The terminal ileum was entirely normal as was the anastomosis.
There was some mild inflammation in the colon – not impressive enough to treat to be honest, but this is probably the cause of the mildly raised calprotectin.
I’m glad the experience was acceptable and will pass on your comments – thanks for the feedback.


I had half been expecting the scope to find nothing but, as with all health matters, you can never be certain. I’m not going to tempt fate by predicting a quiet year bit, here’s hoping…..

Next GI appointment  – 6 months time and no need to re-start Crohn’s medication.

Crohn’s Disease – DIARY – Starting 2015 as we mean to go on..

I’ve been trying to think positive thoughts. A new year; a new opportunity to put Crohn’s on the back burner, or maybe not….

Thursday 15th January 2015 – St.Thomas’ – the first appointment of the year. Not one I had been expecting until the letter came through the post. I was in half-a-mind to cancel. It was the follow-up to seeing the dietician in October 2013 to talk through the benefit of low FODMAPs.

Since our last meeting I had a new diagnosis to contend with – Bile Acid Malabsorption. We spent about 40 minutes discussing many different aspects of diet. She recommended that I try and increase the amount and variety of fruit and vegetables in my diet. She also suggested taking multi-vitamins each day as the loss of my terminal ileum would mean not absorbing them properly from normal food.

I seem to be unable to get my BMI out of the overweight range (currently 26.1). She told me not to get too hung up by the numbers. Whenever I’m working in London, generally three days a week, I try and walk at least 10km during the day. I’m trying to achieve the balance between keeping fit and keeping the weight on, which may sound a little odd. My gastro consultant likes his patients to be on the slightly heavier side in case there is the sudden need to undergo an operation. (I lost around 5kg after my last one).  I want to keep fit for the same reason. As you get older the recovery process takes longer so the fitter you are at the start, the better.

Tuesday 27th January 2015 – St.Thomas’ – first gastro appointment of the year was originally planned for 13th January but I had, stupidly, taken my calprotectin sample into the pathology lab too late. A quick email to my consultant’s wonderful secretary and she slipped my appointment back two weeks so the results would be available.

I arrived shortly before my allotted time and waited for my name to appear on the “laser display screen”. It must have been about 15 minutes before it appeared – “Go to Room 17”. When I opened the door one of the registrars greeted me and introduced herself. I didn’t stand on ceremony. I explained that  I really wanted to see my usual consultant, for continuity’s sake, and was prepared to wait accordingly. She was fine with that.

Back to the waiting area. Before now I’ve had to wait anything up to another hour but this time it was only ten minutes – “Go to Room 18”. When I entered the room my consultant had two other doctors sitting in with him, one visiting from Greece; the other a junior doctor working within the department.

I produced the list and my GI explained to the others that I always had a list and that he liked working that way.

1) What did the calprotectin result show? 188. Not good. Previously I had been around the 50 mark. This new result suggested that inflammation had returned. Bugger!

2) Blood test results? All OK except platelets, although these had now risen to 86, up 20 points, so actually an improvement.

3) Do I need a colonoscopy? Yes. Given the elevated calprotectin level the only way of checking for inflammation was to go in with the camera. I noted that, thankfully St.Thomas’ use Citrafleet which only requires drinking 300ml of liquid and a small bottle of senna. The thought of drinking 4 litres of Klean Prep, as used by some other hospitals (and in Greece BTW), filled me with dread. Request typed into computer with note about Citrafleet. Just need to wait for appointment to come through. My consultant would be driving the camera.

We then had a short discussion on how much sedation patients are given. I like to be as awake as possible so I can ask questions there and then and not have to wait for the follow-up appointment to get any bad news. The Greek doctor said if he was having it done he would want to be out cold!

4) I mentioned that over the Christmas period I had felt really rough – lower back pain extending down the backs of my legs; and ache around my midriff and very tired. As always with Crohn’s it was difficult to know if it was the Crohn’s itself, a virus I had picked up or overdoing sweeping up leaves.

5) We then had our usual conversation about the ache around my anastomosis, which comes and goes, especially after physical exertion. He said that after surgery it is entirely to be expected and that hard, physical effort would probably aggravate it. One to park I think.

6) I ran through my discussion with the dietician – see above.

7) More an observation really – I am very surprised that two capsules of Loperamide are controlling the Bile Acid Malabsorption and that I currently don’t need to take Questran or similar.

8) My other observation was the lack of discussion (as far as I can see) of BAM given the prevalence in patients after ileal resection. I felt that it really should have wider coverage and that the SeHCAT test should be routine given the severe diarrhea it can cause and that the symptoms may appear to be the Crohn’s itself and get treated as such. I quoted the NICE statistic that I had found.

9) I asked him to pass my thanks on to his secretary. She really is exceptional and always goes the extra mile to get things sorted out. He agreed and said how pleased he is that she works with him.

10) I wondered if the Gastro department ever held open Q and A sessions that enabled patients to come along ask general questions about Crohn’s/IBD to increase their own understanding of the disease. He replied “not at present” but they had been discussing ways of engaging better with their patient base. He would pass my name onto the person charged with the task.

I explained that I’m getting to the stage where I would like to give up work and devote some time to helping the Crohn’s community although I felt I knew very little about Crohn’s and in the grand scheme of things had escaped very lightly compared to those who had had 20+ operations. He felt I was doing myself a dis-service.

And that was it. Follow-up appointment for six months time but, as he pointed out, the next time he saw me would be from the wrong end of an endoscope. His “list” had now been moved to the new Endoscopy Suite at St.Thomas’ which pleased him as the equipment was better than his old clinic.

I walked back to Victoria Station somewhat disappointed. I had hoped the calprotectin level was still around 50. If the colonoscopy does show that the inflammation is returning the next question will be how to deal with it. We know Azathioprine isn’t an option.

Next planned appointment – Haematology at Guy’s – 11th February 2015….or will the colonoscopy come along first?