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.

Old Dog, New Tricks

A post because of Crohn’s, not about it.

Whatever else you can say about Crohn’s Disease it certainly does give you the chance of new experiences, mostly unpleasant, to be honest. I won’t list the nasty ones here as they are covered in the video at the end of this post. I thought I’d record how I dealt with this opportunity in case others get a similar chance to raise awareness of IBD.

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

mav_lak_2In this instance I really wasn’t sure what to expect. A fellow patient at St. Thomas’ Hospital was due to talk to some undergraduate nurses, about “Living with IBD”, but then found that they were double booked that day. Would I step in and do it instead? Of course I would, after all how difficult would it be to talk to a few nurses? The date was set for 5 weeks time.

I wouldn’t need any preparation. I’d lived with IBD long enough to write a book. I would just turn up and talk, or so I thought. The last thing I wanted was to read from a script but, after some more thinking, decided the least I should list out all the topics that needed discussing.

Years ago I dismissed mind maps as more “management clap trap” and then actually drew one and have been sold on them ever since. It would help clarify my thinking. Here’s what I came up with :

mind_mapAt this point  I found out that there would be around 200 nurses, in a proper lecture theatre and  I would be talking at the end of the afternoon. It dawned on me that to do the subject justice, and not short change the nurses, I would at least need some notes and something to keep everyone awake. I tried doing a run through, just using notes, and it was terrible – stilted, hesitant, repetitive…..  I would have to write the talk out word-for-word, the very thing I didn’t want to do.

I find that simply reading through what I have written doesn’t pick up  over used words or even ones that are missing. Much better to hear it being read. I found that the software I use has the facility to convert the text to speech and save it as an audio file in iTunes. I can then listen to it on my iPod.

After several iterations, including two read throughs to my wife, I was finally happy with the contents. Maybe if I then listened to it endlessly it would become engrained in my memory and I would not need notes.

After half-a-dozen listenings it hadn’t worked. I would have to work from a script after all…..

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

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

Kings College Hospital, Lecture Theatre

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.

Harmatology

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…..

Managing Consultants and Appointments

What follows is based on my experience being treated by the UK NHS as both an in-patient and an outpatient, mainly with gastroenterologists but more recently haematologists and hepatologists as well. The dynamics described may be different where you are funding your healthcare privately and paying a consultant directly or via an insurance company.

If this post seems rather analytical and cold, with few emotional considerations, it is because I have found this “matter of fact” approach has made the Crohn’s, other minor annoyances such as PVT, potential PSC, BAM, hospital stays and consultants, a lot easier to deal with.

I thought long and hard about how I could encapsulate my attitude in the length of a Tweet and came up with this :

I AM THE EXPERT IN MY HEALTH

MY CONSULTANT IS THE EXPERT IN MY CONDITION

For old hands at the “health game” most of this will probably seem blindingly obvious so it’s aimed at newer patients, ones that become tongue tied in front of their consultant or that find appointments difficult to handle.

1)  Making Lists – Definitely in the “blindingly obvious” category. This has to be the best thing I’ve ever started doing. I used to go into the consulting room with the attitude “of course I’ll remember all the things I want to ask.” It was a male arrogance thing. I’d then arrive home and my wife would say “and what about x?” Blank stare. “Why didn’t you write a list?” Another blank stare. This went on for many years (male arrogance is a long term condition) until the penny finally dropped. Nowadays I start preparing a list several days before the appointment date. (The one shown below was compiled in preparation for seeing the haematologist prior to weighing up the advantages/disadvantages of starting Warfarin).

 

Once you’ve written it out talk it through with someone close to you as they may have spotted things in your appearance or behaviour that they are concerned about but “didn’t like to mention” or didn’t think were significant.

Nowadays, I print out the list and make a point of having it in my hand as I enter the consulting room and after the initial pleasantries explain that there are a number of questions I want to get answered and point to the list. This sets the scene for what follows i.e. don’t expect to finish this consultation until we’ve been through it all.

It is worth noting down the answers, although these should be covered in the follow-up letter that you get sent a few days later. (Or rather SHOULD be sent –  more about that further on). Another advantage of having a paper list is that if you print it, or write it out nice and legibly, and then become emotional or tongue tied you can hand it over and let the doctor work their way through it.

2)  Manage Your Appointments – This may or may not be necessary depending upon how your hospital works. I get treated by two different departments in the same hospital. One of them will make the next appointment for you there and then so that you leave the hospital with the appointment letter in your hand. The other department says they will contact you closer to the time but there is always that doubt at the back of my mind that the request will get lost somewhere in the system and by the time I realise there’s a problem the appointment gets delayed.

Nowadays I set a reminder in my calendar, two months before the appointment is due, to contact the consultant’s secretary just to remind them and that does the trick. Two months is the right length of time for me but it may differ in your area. For Guys and St.Thomas’ (GSTT) it’s usually between 3 and 6 weeks to get an appointment with a particular consultant or to book up for a procedure such as an endoscopy.

3) Continuity – Generally I like to see the same consultant each time so there is continuity in approach and it is not necessary for them to go through my whole medical history before starting the consultation. I didn’t used to question it when I was seen by different registrars or junior doctors but as my health worsened I really felt it could become a matter of life or death (maybe slightly over dramatic!) that I saw the person with the most experience/expertise and who understood my case.

The best way to approach this is to tell the nurse that weighs you that you need to see a particular consultant and they can then put a note to that effect on the front of your file or make sure your notes get put in the right pile. Occasionally it doesn’t work and you end up being called in by another doctor. At that point I politely explain that I’m not doubting their medical knowledge but I do need to see my usual doctor. This has always worked OK.

All the above goes out the window if I’m just having a routine, follow-up appointment where no important decisions need to be made. If that’s the case I’m happy to see any of the doctors. I do actually question whether this type of appointment has any value and would be quite happy to do it by email, Skype or even an old fashioned telephone call. The only advantage of the face-to-face contact that I can think of is the doctor being able to spot something of concern that you haven’t noticed or the ability to carry out a physical examination.

4) Medical History – important if you are seeing new doctors or consultants. If you’ve only been suffering from Crohn’s, or whatever disease you’ve got, for a short period then it’s likely that you can remember all the key dates and events that have brought you to this particular appointment.

If you’ve always been treated by the same hospital then your medical history should be available to any of the professionals treating you via their records system but if you’ve moved around between hospitals, health authorities and consultants then it is likely that there won’t be one single, unified set of records.

When moving to a new consultant and/or hospital, or if you are unfortunate to have been admitted to a new hospital as an emergency, possibly unconscious, then a brief outline of your history can save a lot of time in the early stages of working out what has gone wrong or which will be the best area to start investigations or treatment.

35yrs_MedRecs35 years of medical records

[For years I was always being asked when was my first Crohn’s operation and what exactly the surgeon did at that time. I knew it was an emergency admission to Croydon General Hospital sometime in 1979 (suspected appendicitis) and that it turned out to be a perforated bowel, but I couldn’t say whether any gut had been removed or if it had simply been repaired. It was only in 2011, when I obtained copies of all my medical records from Croydon Health Authority that I could finally give the definitive answer.

Since then I’ve painstakingly, some would say anally, extracted all the key points from consultation notes and follow-up letters and summarised the whole lot, in date order, onto a spreadsheet. This is my “back-up” evidence from which I have then drawn up a simple, one page chart representing my full Crohn’s history and a second, more detailed one, covering the last 6 years. My current set of consultants seem to approve of this approach and have put copies into my notes.

Click here to open pdf – “Health Record 1977 to 2015”

Click here to open pdf – “Health Record 2010 to 2016”

Unfortunately very few x-rays were still available but I consoled myself with a couple of more recent CT scans which I can view using Osiri-X Lite (available as a free download). I find them fascinating but my work colleagues are not quite so sure.]

Maybe a step too far! Scenes from CT scans on my ‘phone

5) Contacting your consultant between appointments – Some consultants are happy for you to email them directly when you have a query or a problem or there may be a dedicated, condition specific, helpline that you can use as the first point of contact. It really does seem to vary. I have read of other patient’s experiences where the “patient confidentiality card” is played to avoid email contact. I’ve never come up against this. So far so good. You should be able to work out an individual email address as organisations like to follow a particular format or you could simply ring up their secretary and ask for it straight out. Nowadays many hospital websites clearly display the consultants contact details.

This doesn’t come without some responsibility from the patient’s side. I make sure that I only contact the consultants directly if I have something that is urgent and only they can answer or they’ve asked me to report back about a problem. I was being treated by three different specialities during 2012/3 so I usually copied any emails to all three consultants as it helped to maintain the co-ordinated care.

It is worth keeping copies of the emails as I found out when I went to have a second bone marrow biopsy and the doctor performing the procedure was not aware that she needed to use a blood thinner to get usable samples (which is why the second biopsy was required). I was able to show her, on my phone, the email trail that explained it all after the previous biopsy.

6) Follow-up letters – shortly after an appointment or procedure your consultant should write a letter to your GP – secondary care provider to primary care provider. These letters are important to keep your GP up-to-date with your condition and a copy should also be sent to you, normally with a caveat that it is a communication between medical professionals.

This system of follow-up letters has always worked smoothly for me with gastroenterology and hepatology issuing them a couple of days after the appointment but then I came up against Haematology. The appointments were fine. Lots of good, open discussion but no follow-up letters. Four appointments and no follow-up letters. I did query this a number of times but still no letters, just apologies.

A few months on and guess what, still no follow-up letters. In the end I looked at my hospital’s website and found the name and email address of Haematology’s head of department. I contacted her, explaining the situation and suddenly I had four, retrospectively written, follow-up letters.

Are there lessons to be learned? I think so.

Lesson 1 – If you are not getting the service you should expect then go to the top and explain the problem. Will this always work? No, but might at least set the wheels in motion to getting a solution.

Lesson 2 – Keeping your own record of what gets discussed and agreed during a consultation is worthwhile if you end up in a similar situation to the above. I use a blog to record what goes on but if you don’t want to share your experiences with others then keep your own private health diary for future reference.

7)  Manage Your Appointments 2 – er, haven’t we already done this one? Yes, but this is managing how the actual appointment goes. I’ve left this one almost until the last as it’s fairly new territory for me. I hope to develop the theme in the future to reinforce the notion that the patient should actively manage how the appointment goes and make best use of the resources available i.e. your consultant’s experience and advice.

This train of thought was triggered by a visit to, yes you guessed, Haematology when things started to go very wrong. My usual consultant wasn’t available so I was being seen by a new doctor. The lack of follow-up letters meant that he started discussing a subject that had been “parked” a year previously.

At that point it struck me that going into the appointment I had a very clear idea of the outcome I was expecting and of the information/areas/risk factors we needed to discuss to arrive at a conclusion. (The decision was whether to start Warfarin or not). Clearly my issue wasn’t with the new doctor, as he had simply referred to the latest notes, so I asked to see the Head of Department. I knew this would never happen, but at least it had the effect of getting the appointment back on track with the appearance of one of the senior consultants who had been a party to reviewing my case at a recent MDM (multi-disciplinary meeting). I ended up with the decision I had been expecting.

I’m wondering if it would be worthwhile starting the next appointment by explaining where I want to be the end of the appointment and how I see us getting there. Would that be too pushy?

8) and finally – as always – keep a sense of humour if you can – useful in surviving ALL medical encounters but I accept this is not easy if you feel really terrible; you’ve been waiting an hour to be seen; the phlebotomist has made several attempts at finding a vein; that person who arrived after you has just been called in before you; etc. – I’m sure we’ve all been there.

Sometimes humour doesn’t work. A few of the doctors I have met do seem to have had a “humour bypass” (I’d just like to make it clear that this doesn’t apply to any of the fine doctors who are treating me at Guys and St.Thomas’, especially the ones that drive the endoscopes or biopsy needles). I have however been left in the situation in other, lesser establishments where my witty remark has gone down like a lead balloon and I’m left staring at a doctor who is clearly thinking “should he be in the psychiatric ward?”.

..and remember if you’ve been kept waiting longer than you were expecting it’s probably because your consultant has spent more time with preceding patients than the allotted 10 minutes. This works both ways. You may also need more than your ten minutes.

IBD Awareness, Stomas and Nursing Heroes

The theme for this year’s “World IBD Awareness Day” on 19th May was “Improving quality of life for people with IBD” and in particular the importance of Specialist IBD Nurses who can make such a big difference to patients’ lives.

My own experience of IBD Nurses is fairly limited. I have been lucky enough to only need to contact them with simple questions by ‘phone or email. I know, from conversations with other IBD patients, just how much support some get when they need help. I say “some” because not all patients have access to a specialist nurse and/or a helpline. A fellow IBD’er ran a poll on Twitter and as you will see from the results a significant percentage of patients are missing out.

Poll_1I’ll return to this point at the end of the post.

Last week saw “International Nurses Day” (12th May). It was an opportunity for patients to take to social media to express their thanks, publicly,  to nurses for the care they have received. (I would hope that patients thank their nurses face-to-face anyway).

I would usually fight shy of naming my nursing heroes. Patient confidentiality works both ways but there are two nurses who made a huge difference. If you will indulge me over the next few paragraphs I will explain their significance.

I’ve broadened the definition of “specialist IBD nurses” slightly to include stoma nurses as it neatly allows me to combine both the subjects of this post.

Whilst stomas are not the sole preserve of IBD patients it is a sad fact that many of us will end up with one, temporarily or permanently, at some point. I’d like to explain how the right support at the right time made a real difference to what could have become a very difficult period of major adjustment – getting stoma’d.

In August 2010 I had already been warned that I might come out of the operating theatre with one and to that end I had met with Fiona, the first of my nursing heroes, one of the stoma nurses based on the 12th floor at St.Thomas’ Hospital. She had spent time with me during the pre-op period explaining just what wearing a “bag” involved, some of the challenges I would face, answered my many questions and then marked the optimal site on my abdomen for the surgeon to aim for.

Coming round in Recovery, post-op, it wasn’t a great surprise to find the worst had happened. For those first couple of days after surgery you are so high on a cocktail of drugs that seeing your own, living stump of intestine poking its way through your abdominal wall is somewhat surreal. It’s at the point when your consciousness returns to some form of normality that reality hits and you need all the support you can get to start coping with this alien being and alien lifestyle. The thought of carrying round a bag of s*** fixed to your waist…..

Calmness and confidence are the order of the day. Fiona provided both in pouch loads. Nothing flustered her and that positive attitude transferred across. (Well, I like to think it did, but reading her ward notes from the time proved that reality may have been slightly different). She patiently visited me each day until she was confident that I could manage on my own.

Wind forward to the day of discharge and suddenly you’re home, alone (metaphorically speaking). It’s down to you to manage without the immediate support available on the ward. Fiona gave me a follow-up call to make sure everything was going OK and at this point my care was handed over to the local stoma nurse. This was Julie, my second nursing hero, based at East Surrey Hospital. She made contact shortly after my discharge and came to see me a couple of days later. She immediately put me at my ease and like Fiona was calm and unflappable.

I saw her on several occasions, not always in the best of circumstances. There was the time when my bag started filling with bright red blood, and the time when the stoma started prolapsing, oh, and the odd leak. Each of these problems could have knocked my confidence for six but each time Julie had a solution and some comforting words. By the time I was ready for the reversal operation I had become completely at ease with my lot.

There was never any question of a stoma nurse not being available either in person or at the end of a ‘phone. Why should it be different for Specialist IBD Nurses? I wonder if it comes back to the old idea of IBD being the “invisible” disease. Stomas are visible; tangible. For many IBD patients, those who have not undergone surgery, you really wouldn’t be able to tell they were suffering from IBD just by looking at them. Maybe that’s why IBD is not given a universal high importance.

You would think that providing these services would be a “no brainer”. Even if we ignore the advantages to the patients themselves then surely they must make sense on purely economic grounds. They act as a filter between the patient and the consultant. This will alleviate some of pressure on consultants’ time and potentially avoid the need for booking short notice outpatient appointments which inevitably means overloaded clinics. They may even reduce the number of visits made to the frequently beleaguered Accident and Emergency Departments.

I guess that it is all down to squeezed budgets and IBD not being sufficiently high profile to make it a political “hot potato”. This is why we need IBD Awareness Day.

Pavlov’s Dog and Vlogs

There hasn’t been an #IBDChat on Twitter for a while so the last hour or so has been quite enlightening. We may have strayed from the original subject of “the causes of IBD” but it gave a good indication of the subjects that sufferers are concerned about.

The conversations were mainly about the physical aspects of IBD and it wasn’t until close to the end that any psychological aspects were mentioned.  It does seem to be an area that needs more open discussion both inside and outside the IBD community. For some sufferers the psychological effects may be even more debilitating than the physical ones.

I have used the hashtag #crohnspatterned to describe how I feel Crohn’s has affected me. When I checked to see if the tag had been used by anyone else it turned out to be unique. I’m sure the phenomenon is far from unique and will affect sufferers of other chronic conditions as well.

Let me make it clear that I have escaped pretty lightly both physically and mentally but the experience has been enough for me to realise how things could escalate. I’m starting to feel that Crohn’s now has me patterned like Pavlov’s Dog.

(Just in case anyone is unfamiliar with the story of Pavlov’s dog  here’s a three sentence version. Pavlov was a Russian psychologist born in 1849. As part of an experiment he found that it was possible to condition a dog to associate the sound of a bell with receiving food. The dog, eventually, would salivate at the sound of the bell in anticipation of the food.)

I have a variety of “bells” which act to trigger my digestive system into action, unfortunately we’re not just talking saliva.  The main triggers are the alarm in the morning; that chiming sound on public transport that heralds the “this train is about to be delayed for an indeterminate time” announcement; the sound of my car starting as I am about to embark on a long journey.  So far I have been able to control the effects by extra Loperamide capsules (Imodium) and mind over matter but I can envisage a time when they simply are not enough. Maybe this is all linked to having a “second brain” in our gastrointestinal systems and the triggers are affecting it.

Vlogging

I made a comment on the #IBDChat that I find the use of words such as “poo” and “pooping” when discussing IBD rather demeans the subject and makes it appear less serious than it is. Just my opinion. You may or may not agree but that leads me neatly onto….

I will admit to preferring the medium of blogging to vlogging. Why? Because I can read and concentrate on the content without being distracted by the colour of the curtains in the background or the appearance of the vlogger, etc. Maybe it’s a generational thing as selfies don’t do a lot for me either. Whatever.

A fellow IBDer asked me if I’d ever watched any of the IBD vlogs on YouTube and I had to admit that I hadn’t. They asked me to have a look at a particular one and asked my opinion of it. Now I am not stupid enough to name that vlog here or what the subject was. I don’t want to start some internecine spat within the IBD Community but. ….

I found the vlog, hit play and sat back to be educated or enlightened. After a few seconds I started to ask myself if it was a joke or some kind of spoof. I discounted irony. I kept watching. It made me feel uneasy and I started wondering what benefit it added to our IBD world. If this was meant to be adding to the cause of IBD awareness then it failed.

If you are going to make an IBD vlog then please make it relevant and don’t cheapen the subject. Nuff said. Can’t see myself making one anytime soon.

 

 

 

If Facebook was older

“Thank you for letting me join the group. I’m a 22 year old male and have not been feeling well over the last year or so. I make frequent visits to the bathroom and my weight is dropping off. I’m currently 54kg which is not great when you are six foot tall. I went and saw my GP. He initially told me it was “nerves” and later changed that to “spastic colon” but having recently spent 10 days in Croydon’s Mayday Hospital, undergoing tests, the diagnosis is now Crohn’s disease. I’ve been prescribed steroids for the inflammation and codeine phosphate to slow my system down. I know that the disease has no cure and that if I’m unlucky I could end up having surgery. That’s the bit that really scares me because the thought of going into hospital fills me with absolute dread. Just going there for a barium enema was bad enough….”

If Facebook was older, and had been around in 1978, I may well have posted the above. Nowadays I read similar stories from young adults, many also in their early twenties, explaining that they have been recently diagnosed and the impact that diagnosis has had upon them both physically and mentally. Some are truly heart rending. I tend to forget I was in a similar place all those years ago.

A few decades on and I am currently in clinical remission but not without a few related health issues arising along the way. I would like to hope that others, who have just started out along their Crohn’s path, can achieve a similar sort of equilibrium sooner rather than later. I’m not naive enough to think I have achieved full closure as we all know that Crohn’s can return when we least expect it.

I was determined to at least attempt a partial closure and to this end set out to write a book based on the story so far. With a “big” birthday nearly upon me it is 99% complete. A few finishing touches and that will be it. The next part of the challenge will be to publish it, another new skillset to learn. Watch this space.

cover
Labour of Love

The biggest difference between the year of my diagnosis and the present day is the availability of IBD information. When I was told “you have Crohn’s” it was just something I would have to live with, take drugs for and, if I was unlucky, might end up needing surgery for. That was pretty much it. Nowadays, if you search the web for “Crohn’s Disease” there are over 8,000,000 entries ranging from excellent, well written information sites at the top end of the scale down to the downright dubious ones which are only there to try and sell some miracle cure or diet to desperate sufferers. Then there are all the forums, FB pages and blogs (like this one) where anyone can air their opinions.

I was discussing this subject with my sister-in-law. She asked if I thought I was better off having spent many years in blissful ignorance rather than in information overload. She remarked that I had maintained a positive attitude throughout and thought that it must have helped coping with the disease. My immediate response was “I don’t know”. I can see the arguments from both sides but having given it further thought, on balance, blissful ignorance was probably best for me. Fortunately/unfortunately this is no longer an option.

As ever one train of thought leads to another. For instance, what should the patient expect from their consultant? At initial diagnosis should they be told the worst possible outcome or should all the tests results and procedures to be completed before going that far. I had reason to question this at the end of May 2012 when it was possible that I was (and still may be) suffering from PSC (Primary Sclerosing Cholangitis). To confirm the diagnosis needed a number of scans and biopsies to be carried out but before any of these happened the consultant was talking about needing a liver transplant. You can imagine how I felt, sitting on the edge of my hospital bed, to be confronted with those words. It takes a lot to faze me but even I didn’t knw how to react. Having now had the tests it is possible that I have the beginnings of PSC but nothing definitive. Did I really need to have the threat of a transplant dangled before me? Was it all down to a lack of bedside manner? Can bedside manner be learned? (That would make a good subject for, maybe, a survey).

..and my other question – how should we respond to the newly diagnosed, or waiting to be diagnosed, IBD sufferers on SoMe? Personally I work on the basis of trying to be positive, as I have plenty of positives along with the not so good times. I have seen other respondees jump straight in with tales of multiple operations, months in hospital and relationship break-ups. The FB entry that prompted me to write this piece was from a new sufferer, along the lines – “I’ve got Crohn’s; it will mean having an operation and ending up with a bag; my life is over.” After many supportive comments one person responded with “if it’s a choice between dying or having a bag then I know what I would choose.” To me it seemed so insensitive.

I’m not denying that all these things can happen but should we really burden someone who is just coming to terms that they have the disease with all the potential “baggage” that may, or may not, come with it? After all, we all suffer in different ways; we all cope in different ways; we all survive in different ways.

I would like to know if you think I’ve got this all completely wrong or if you agree. Answers on a tweet to @crohnoid.

Goodbye 2015

It was a quiet year, in fact I’d go so far as saying a very quiet year from a health point of view. That’s why these posts have become less and less frequent. During November, however, my stress levels were rising and not because of the imminent upper GI endoscopy.
One of my clients decided to move office from Central London to Canary Wharf. No staff consultation. It was a fait accompli. In November the move took place. I find the new office soulless, lacking in atmosphere and more importantly, for a Crohn’s sufferer, the bathroom facilities are unpleasant, insufficient for the number of employees and made worse by being often out of order. Oh, and the coffee tastes funny which I can only put down to the water!

…and as for Canary Wharf. I would describe it as a culturally barren, corporate windtunnel, full of expensive food outlets and poncey clothes shops. (Would anyone really buy an outfit comprising a green tweed jacket with pink collar and matching pink moleskin trousers?)

Getting there means relying on either the Docklands Light Railway (bearable) or the Jubilee Line (no seats after 6:30am). In Central London I used to be able to walk to the office from any of the major stations – Victoria, London Bridge or Waterloo – my choice. It meant less stress, more exercise, better chance of weight loss. The only redeeming feature of Docklands are the photo opportunities, as long as you like modern, glass facades and super yachts.

Happy New Year 2016

What better way to start than a visit to the hospital? In this instance it was for a planned, routine, gastro appointment. I had been putting it off until I had the results from an upper GI endoscopy. The scoping was carried out on 14th December and I had emailed the gastro secretary the next day asking if she could arrange an appointment. Bearing in mind we were close to the Christmas break I was expecting a date some time in late February or March at the earliest. I was amazed when 5th January came through. I produced the obligatory list of questions/topics for discussion.

My appointment was booked for 4:00pm but I didn’t make it into the consultation room until gone 5:00pm. My consultant did apologise for the delay. I know that it’s the price you pay for having a consultant that isn’t trying to hurry you out of the door when your ten minutes are up. The large waiting room is a lonely place when you have one of the last appointments of the day.

empty_waiting
The empty waiting room in Gassiot House

After exchanging a few pleasantries he asked me how I was feeling. I said generally OK but over Christmas and the New Year both my wife and I had been suffering from some digestive bug that rather put a dampener on the festive season. As we were both suffering the same symptoms I was sure it was nothing to do with Crohn’s. He said that I was the best person to judge if I was having a flare-up. I didn’t agree as I honestly can’t remember what it was like. I’m starting to wonder if I’ve ever had a really bad flare. I have never felt the need to go into hospital as an inpatient to sort one out.

One thing I did not understand – the operation I underwent in 2010 was described by the surgeons as “one of the most complex ever”,” very difficult”, “enjoyable”. If my Crohn’s was that bad how was I surviving at the time. He replied that there was not necessarily a correlation between the complexity of the surgery and the acuteness of the Crohn’s. The operation may have been difficult because of the involvement of other parts of the body. This rang true as one of the surgeons had told me that my intestines were starting to adhere to my back muscles.And so to the list…..

Monitoring Regime

With the Crohn’s still in a quiescent state my main concern was how we should structure an ongoing monitoring regime and set some provisional dates. The last tests/procedures were as follows :

Last Colonoscopy – 25th February 2015. Mild inflammation in colon

Last blood test – 12th August 2015. Low platelets, so no change there then

Last calprotectin test – 12th November 2015. Just over 100 but showing downward trend

Last Upper GI endoscopy – 14th December 2015. No variceal banding required

From the above we were able to set the schedule

Next colonoscopy – February 2017 unless calprotectin gives any concern. “From a bowel cancer monitoring point of view I was getting more frequent screening than the recommended norms.”

Next blood test – at Haematology appointment in May

Next calprotectin test – in time for results to be available for next Gastro appointment. I asked if I should stop taking Omeprazole before the test. “Ideally, yes. It would be a good idea as it can slightly raise the test results.”

Next upper GI endoscopy – December 2016. “This would remain annually and exact timing would be dependent upon whether banding was required or not.”

Next Gastro appointment – I suggested we slipped it to yearly. “Yes. Happy with that on the basis that if you are having problems in the meantime we are always there to assist.”

Bile Acid Malabsorption

I appeared to have it well under control with Loperamide and wondered why other drugs used such as Cholestyramine? No straight answer. If you can control with Loperamide then do so.Are there any implications of BAM on the biliary system? If, under normal circumstances, a large proportion of bile acid is recirculated into the system does a patient with BAM then produce more bile acid to make up the shortfall? If so does this put a greater strain on the biliary system and could affect a condition such as PSC? “The body will produce additional bile acid but no link has been identified with PSC.”

Next B12 injection – 8th January 2016

If you have severe BAM does this also mean that absorption of other vitamins and minerals will be affected to the same degree? If yes then should you have B12 injections more frequently than the usual 3 months? Absorption of vitamins is not confined to the area you had removed. B12 is absorbed in the same area as bile acid. I said that I was having B12 injections at the standard 3 monthly intervals but had not found them as effective recently. “You may want to reduce this to two monthly intervals and see if that helped with tiredness/energy levels.”

Continue with six monthly appointments?
See above

Putting something back into IBD community

Having lived with Crohn’s disease for nearly 40 years I was sure that I could help other patients or the IBD community as a whole. As I have been toying with the idea of retiring I should have some time on my hands. That triggered a discussion on the factors I was considering in my decision. I mentioned health issues. He hoped that I wasn’t putting too much emphasis on those issues.The Dept had become a victim of its own success because once a patient had been referred there they frequently asked to transfer their care permanently. He had a number of possible areas where patient representatives could help. I won’t go into them here at present until/if they progress further.

As I was leaving I was asked if I would mind helping out with a research project. I said of course I didn’t mind and was introduced to a medical student who was looking for Crohn’s markers in saliva. I spent the next ten minutes spitting into a phial whilst discussing various aspects of IBD. Someone’s got to do it.I walked back over Westminster Bridge towards the Tube station and it started to rain. Don’t think I would have enjoyed riding a horse in the dark, over the river and with the rush hour traffic just starting to build up.

Crossing Westminster Bridge
Crossing Westminster Bridge

Guilt, Research and Planning

Guilt

I feel kind of guilty writing this post as it finds me laid back and generally at one with the world whilst I know there are many fellow IBDers who are really suffering at the moment. You only have to dip into the Crohn’s Community on SoMe to read some sad , harrowing tales.

I’ve come to terms with this guilt by telling myself that my current situation may help others realise that there will be times when life returns to relative normality. As I approach the fifth anniversary of having an ileostomy my memories of that event are starting to fade which is why………

Further Research

Have I mentioned before that I am in the process of writing a book? It will explain the route from diagnosis, in the dim and distant past, to my current state. It has a target readership of, er, one. Obviously I hope it ends up with a few more and proves of help/interest to other sufferers or even medical professionals who want to understand the patient experience from the other end of the endoscope but having said that, I am writing it primarily for…. myself. The reasons?

1)   A new challenge; something to keep the brain functioning; a chance to be creative. I want to see if I am capable of producing something that is half readable?

2)   To achieve a sort of “closure” up to this point, on the basis that once I have everything documented I can put the eBook on a virtual eShelf and leave it there

The book is nearing completion. As part of the process I have been re-reading the posts on this blog. Those covering the period from August 2010 were written as they happened. This re-visit has thrown up a few gaps in my account or need further examination. One passage in particular piqued my interest. It was a comment made by one of the team of surgeons who carried out my ileostomy almost 5 years ago. I saw him at the local hospital a few weeks after the op and he remarked on how well I looked considering “what they had done to me”. Sounded sinister. He went on to describe the operation as a “classic” and one of the “most complex they had ever carried out”. In a game of operation top trumps I’m sure this would score quite highly although the whole thing only took four and a half hours which is relatively quick compared to others I have read about. Maybe the fact it was done using open surgery, as opposed to keyhole, sped things up.

But what exactly had they “done to me”? I emailed the surgeon a few weeks ago to see if he kept records of each operation. He replied that I would need to get access to my patient file from St.Thomas’ and find the Operation Note. As he no longer worked there hospital he had no access to their system but he kindly offered to “translate” the document should I get hold of it.

Up until recently I hadn’t bothered obtaining copies of my St.Thomas’ notes as I had been studiously filing all follow-up letters as I received them and writing up accounts of appointments/procedures for this blog. However it struck me that, for completeness, I should try and get hold of the notes as they may add some detail to the narrative. I filled in a request form and took it, together with the £20 fee and proof of ID, to the Information Governance Department at St.Thomas’. I requested the complete file, with the exception of follow-up letters, and for any x-rays or scans that were available. The hospital’s target was 40 days to produce the requested information but it only took 30 days before it was ready for collection. The packet contained four CDs.

I was eager to find out exactly what was on them. Three discs contained imaging and x-ray files in a format I was unfamiliar with, DICOM. I found a software package on the web, OsiriX, that would open the files and, for non-commercial use, the Lite version could be downloaded free. The software translates the scans into 3D images. Fascinating, almost artistic. Like something out of a Hieronymus Bosch painting. Did I understand what I was looking at? To be honest, no, and I am still trying to find the optimum software settings that will make things clearer.

On the final disc was one large pdf file made up of scans of all my notes but in no particular order. 730 pages covered just under 5 years of treatment. On closer inspection there were many blank pages, mainly the back pages to reports, but even with these deleted the page count was around 650. It took a couple of evenings work to get them into some semblance of order.

I eventually found the Operation Note from October 2010 and decided to take the surgeon up on his offer to “translate” it. I hope he doesn’t regret it. I am awaiting his response so maybe he has thought better of it.

The other pages that immediately grabbed my interest were the Nurses’ notes and observations from my two in-patient stays. It was interesting to compare the nurses’ accounts with my diary entries for each day.The process of revising my original posts is taking a while. As the nights draw in it should focus the mind better.

Haematology II Guy’s Hospital – 25th August 2015

As part of my “closure” I had a routine, six monthly Haematology appointment, or Harmatology as my spell check insists. For the first time I struggled to come up with any questions to ask. I eventually managed the following :

  • Latest platelet count? Just out of curiosity as I knew it would be well outside the normal range
  • Do we need to revisit the Warfarin decision at some point in the future?
  • Do I need to continue with iron tablets?
  • Should I be prescribed more vitamin D capsules?

Answers – 56; No; ask GP to check iron and vitamin D levels

On the basis of the above we agreed that appointments could now be yearly and that suits me fine.

Planning Ahead

Time to think about what’s on the horizon. Following the pattern of the last couple of years there will be the yearly upper GI endoscopy in late October with the possibility of further procedures if they find I need variceal banding. The lead time for booking an endoscopy is six weeks. If the system is working correctly then the appointment should automtically get booked but I never leave it to chance and normally give Endoscopy Appointments a ring. I half minded to leave it this time and see what happens.

Then there’s the six monthly gastro appointment in early November for which I need to make sure I’ve got the results of a calprotectin test back….and, depending upon the result, potentially a two yearly endoscopy to see if I have managed to remain in clinical remission and to have a look at my anastomosis.

…but hold on. I’ve just realised I had a colonoscopy in February this year. Have I really managed to put Crohn’s so far to the back of my mind that I have forgotten havng a camera stuck where the sun don’t shine? Maybe it’s because I was given a larger dose of sedative than usual and was out cold for the procedure.

A personal view