Category Archives: endoscopy

Christmas Treat

I’m convinced that blogging is good for you. It helps get some order into your thoughts by trying to write a coherent post.

My challenge today is to link (in no particular order) : an unresolved medical test; distinguishing between the effects of long term medication and the ageing process; another meeting with the surgeon and overcoming the stomach churning effect of burnt bananas.

Last week I emailed my gastro consultant to ask if I ought to have another calprotectin test as the last one was in January. Under normal circumstances I wouldn’t even need to ask the question but there is an issue regarding this particular inflammatory marker. The last result was high (896), a continuation of an ever upward trend over the last two years. The “issue” is that there is no explanation for this trend. I am feeling well and two subsequent colonoscopies have shown no inflammation. Is there any point in having a further test if we don’t understand the result? My gastro responded that I might as well go ahead but agreed it did seem slightly illogical.

I’ll drop the calpro sample in at St.Thomas’ next Friday (10th November) when I’m off to see the Upper GI surgeon to continue our discussion on having my gallbladder removed. By then  the results from my recent MRI Pancreas scan should have been discussed at their Multi Disciplinary Meeting with a recommendation on whether to go for surgery as soon as possible or leave it until it becomes neccessary. Surgery will not be straight forward for various reasons, one of which is portal hypertension/portal vein thrombosis.

The monitoring process for this last condition consists of an annual Upper GI endoscopy(ies) to look for any esophageal varices that have grown and then obliterate them with “banding”. For the last three years the procedure has been carried out in the week before Christmas so it seemed a shame not to continue the tradition. This year’s scoping is therefore booked for Tuesday 19th December. That gives me seven weeks to try and get over my aversion to burnt bananas. Just the thought is now making me feel queasy.

(If you’ve had an endoscopy you’ll know what I’m talking about; if you haven’t then I’d better explain that the Xylocaine spray, used to numb the throat prior to introduction of the camera, tastes of burnt bananas. Feeling queasy again!)

The “banding” is complemented by medication. Omeprazole – a proton pump inhibitor – to help protect the esophageal lining by reducing stomach acid. Propranolol – a beta blocker – to reduce blood pressure.  This latter drug has a number of potential side effects including tiredness, cold hands, feeling breathless, impotence.

In an ideal world I would be totally drug free but the next best thing would be reducing down to the bare minimum. I’ve already turned down Warfarin to thin the blood and not yet stared Colesevalam for bile acid malabsorption. I would like to stop or reduce the Propranolol if at all possible.

The above raises a number of questions. If I am generally feeling OK should I even be concerned that one marker is giving an unexplained result? Should I pursue it and ask for further investigation to be done to resolve the issue or should I just accept it as one of “life’s little mysteries”? How do I tell the difference between the side effects of Propranolol and the natural ageing process. Can I reduce the dosage from 80mg/day? What new questions should I be asking the surgeon? This should become more obvious once I know what the oucome of the MDM was. Unfortunately my gastro didn’t atted the meeting so couldn’t give me a heads up.

…and finally I must use my will power to overcome the burnt banana feeling.

Next update after the meeting with the surgeon.

Elective or Emergency?

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

Why?

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

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

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

Preparing to meet the surgeon for the first time

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

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

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

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

What Shall We Talk About?

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

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

Risks and Benefits of Surgery

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

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

Likelihood of liver damage?

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

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

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

My Preferred Way Forward

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

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

Anything Else?

Next upper GI endoscopy/variceal banding due December 2017

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

…..should be an interesting meeting

Living with a timebomb

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

This is what happened…..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s like living with a timebomb.

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.

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.

COLONOSCOPY (AGAIN)

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 Patient.co.uk says on the matter – “Although liver biopsy may be an essential part of patient management, it is an invasive procedure with a relatively high risk of complications“) 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.

UPPER GI ENDOSCOPY AND VARICEAL BANDING – Monday 3rd September 2012

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.