Ignorance is Bliss

Having read a good number of tweets and forum posts I’ve come to realise my level of ignorance. I wonder how many facts about IBD, that are blindingly obvious to others, have simply passed me by or if the various consultants that I have seen over the years haven’t thought it necessary to discuss because they assumed I already knew them.

You may be surprised at my level of ignorance, as I approach 38 years of coping with Crohn’s, but I have excuses. Firstly, with no internet for many of those years there was little opportunity for sharing experiences and knowledge so easily. Secondly, during the long period when Crohn’s was pretty much under control, I really didn’t need or want to think about it too deeply. Ignorance genuinely was bliss.

There are some things I wish I had discovered/been told about sooner. Forewarned is forearmed. It’s just possible that they might help someone in a similar situation to myself.

What I’d Like To Share (WILTS) and apologies if they are blindingly obvious :

1) We’re all different. Probably the most important thing I have learnt from posts and tweets is that whilst there are some common threads, such as fatigue, it is amazing just how different each of our overall experiences of Crohn’s can be. I knew it could affect any area from mouth to anus but it wasn’t until I had read other patient’s stories that I realised just how debilitating and disruptive it can be both physically and, just as importantly, mentally. My own experience, up until 2009, was that it was unpleasant and annoying but didn’t affect my lifestyle very much. Taking everything into consideration I’ve escaped pretty lightly.

I wasn’t aware that bad fatigue is so common. It’s only in the last few years I have been having B12 injections to try and help with this.

I knew surgery was a possibility but not that some patients would have their complete colon removed……the list goes on…….

WILTS – especially for the newly diagnosed – if you are reading forum posts etc. then please remember that whilst there are some effects we all suffer from – fatigue, for instance – other symptoms or reactions to drugs will be specific to that particular patient and it doesn’t mean you will necessarily experience the same. By the nature of forums people post questions usually when they have a problem, not when they are feeling great. If you keep that in mind then you’ll understand why forums are heavily skewed to the negative end of the scale. I can’t remember how I felt when I was told “you have Crohn’s Disease” but I would imagine that nowadays, for the newly diagnosed, the amount of information on the internet is overwhelming.

2) Stomas. Not something I had even thought about as a possibility. In fact something I didn’t want to think about at all, let alone how to deal with one. Definitely a lot of stigma attached and only something that affected “old people”.

Reality didn’t kick in until I had my first meeting with a Stoma nurse (the lovely Fiona at St.Thomas’) who marked a large, black cross on my abdomen so the surgeon knew the optimal position “if a stoma was required“. At that point I couldn’t ignore it any longer and the doubts began.

After the operation the surgeon’s first word was “Sorry” and I knew when he lifted the blanket what I would see attched to my abdomen. I was so high on all the drugs at that point that I just took it all in without reacting. Over the course of the next few days Fiona showed me what I needed to do to change the bag and built up my confidence for “going solo”. She told me that, at 54, I was one of her older patients. So much for stomas only happen to oldies.

I can’t mention stomas without also mentioning the #Get Your BellyOut campaign. They have really helped with getting stomas out in the open, literally, and lifting some of the stigma attached.

WILTS – the thought of having to have a stoma is a lot worse than the reality. Once you get into the routine of dealing with it, it can give you a lot more confidence going out and about and not having to worry about dashing off to the nearest bathroom IMMEDIATELY. A real life changer in a positive way. If you have any problems (and I had a couple) your stoma nurse will know what to do. Stoma nurses are heroes.

3) Lockdown. Before my elective surgery in October 2010 I had a meeting with the Enhanced Recovery Nurse who she went through the pre and post operative phases in great detail – what I should expect, timescales etc. The one thing that wasn’t mentioned was “lockdown”. At least that’s what the surgeon called it. The medical term is “gastric statis” or “post operative ileus”.

After both the ileostomy and reversal operations my digestive system stopped working and I suffered very bad nausea and hiccups. I hadn’t realised just how low nausea can make you feel. It wasn’t until the surgeon was doing his weekly “follow-up” round that he explained it was normal in approximately 25% of patients and it would eventually pass. I wish I had been forewarned so at least I would have known why I felt so bad straightaway rather than wait a few days before having it explained.

WILTS – if you end up having surgery for your Crohn’s (and it is by no means certain that you will) then you may be one of the unlucky 25% to suffer from this “lockdown”. It is unpleasant, very unpleasant, but it’s made a lot easier if you know why you feel bad and that you are not the first to have suffered it. The preferred option is to let natue run its course but there ae things that can be done to try an alleviate the problem. One way or another the feeling WILL pass and your appetite WILL return.

4) BAM – Bile Acid Malabsorption. I’m probably starting to sound like a cracked record on this one (see several other posts). It does appear to be a condition that should be far more widely known about and discussed. After I had my stoma reversed I couldn’t understand why I still needed to take Loperamide capsules to regulate output. I had assumed, wrongly in my case, that reversal meant the digestive system returned to normal. Every so often I would get a bout of the runs and my first thought was it must be the beginning of a Crohn’s flare; mayve I’ve eaten something that diasgreed with me; or could I have picked up a virus? I asked my consultant about it a couple of times and he mentioned something to do with absorption. As an extra capsule of Loperamide would quickly bring it under control I took it no further.

I mentioned it to him again earlier in 2014 and he decided to book a SeHCAT test. The result came back – severe Bile Acid Malabsorption. Having now got the proper term for the problem I was able to look it up and understand what was going wrong. I’ve explained it in another posts so won’t cover old ground here.

WILTS – if you have had surgery that involved removing your terminal ileum then, from what I have read, it is highly likely you will suffer from BAM and unless you are taking medication to combat it, or its side effects, you will be making frequent bathroom dashes. If you haven’t discussed it with your consultant then ask the question. The SeHCAT test is simple and painless.

Crohn’s Disease – Testing Time

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.

To give you a flavour of the types of tests and procedures Crohn’s (and related conditions) can require I have pulled together all the different types 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.

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

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

BARIUM ENEMA
March 1978 – Mayday Hospital

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 believe 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
2nd October 2012 – Guy’s Hospital

The procedure was planned for the afternoon so I went into work as normal. That 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 hurt to which  she replied “you’ve got Crohn’s and had surgery. You’ve dealt with pain! This will be nothing by comparison”.

I checked in to the clinic and given an identification wristband as the procedure would be carried out in the Day Hospital section.

When the doctor appeared her first reaction was “have you come alone?” That sounded a bit alarming. I asked why I would need to be accompanied and she replied that most patients were nervous about the procedure and liked to have someone with them. Whatever.

She showed me into a treatment room. 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.

I pulled my knees up to my chest and adopted a foetal position. She felt around to find the best location for the needle and then 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.

Instruments of Torture
Bone marrow biopsy 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

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.

CALPROTECTIN – I’ve kept this one in for completeness. The procedure is very simple – collect stool sample; send to path lab; wait  to see if they have managed to lose the sample or come up with a lame excuse for not processing it. If they have then repeat procedure; if they haven’t then wait at least 10 days for result. Research has shown there is a good correlation between the calprotectin result and what would be seen by a colonoscopy. I am very definitely the exception to the rule.

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

This wasn’t going to be a “normal” colonoscopy but I knew what was involved and the lure of having a procedure within two weeks was enough to secure my agreement to what followed.

The preparation in the lead up to the scoping followed the usual pattern of fasting and drinking Citrafleet. The advice leaflet suggested taking the second dose on the morning of the procedure but if they thought I was going to make an hour’s journey on a train within a couple of hours of drinking the solution then they were wrong. I took the second dose late the previous night.

The day of the scoping arrived. By 10:30 I was wristbanded and cannulated. I went off to change into a pair of very stylish paper boxer shorts  with a velcro flap up the back. (Of course I put them on the right way round first time!) Once I had donned  hospital and dressing gowns it was into the male waiting area until they were ready for me.

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

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

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

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

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

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

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

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

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

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

Endoscopy Report

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

CT SCAN
20th May 2009 – East Surrey Hospital

This CT scan took place before I started blogging 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.

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”, hence the name of this blog (and book).

FIBROSCAN
12th November 2012 – St.Thomas’ Hospital

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.

FLEXI-SIGMOIDOSCOPY

Just like a colonoscopy but with a smaller, shorter endoscope and I don’t remember taking any prep.

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 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. (….except the next time I had an MRI they had changed the prep solution to a disgusting tasting clear liquid called Mannitol)

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 via a cannula 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 have to be interpreted by an MRI radiologist so there’s a three week wait before you get them.

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

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
3rd September 2012 – St.Thomas’ Hospital

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.

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, connected to a 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”.

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 knew not to do it again.

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 my insurance would be invalid during the 24 hours following sedation. I wouldn’t do that again either.

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.

When I wrote up yesterday’s events for my blog I found that each time I thought 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 needed to address the issues there and then that I would be 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.

Crohn’s in a Word

If you had to pick one word to describe your Crohn’s experience what would you choose – “PAIN”? “LETHARGY”? “DIARRHOEA”? Some other physical aspect?

Would you choose one of the psychological aspects “STRESS”, maybe “DEPRESSION”. My nomination? I’ll go for “UNCERTAINTY”, on various levels. It’s a state of mind that is very difficult to break free from even during long periods of remission and becomes engrained into one’s thinking and planning.

Short term the day-to-day, sometimes hour-to-hour question – is my digestive system going to behave or will I be dashing off to find the nearest bathroom. I might have been fine for months but there is always that nagging doubt which can turn to anxiety, especially going on a long journey by public transport, and then it becomes self-perpetuating. I’ve tried “mind over matter” – it doesn’t always work. Distraction is my best ally but not always easy to achieve.

If you had asked me, 10 days ago, how I was feeling I would have said “Great. The combination of Loperamide and Colesevelam is keeping the bile acid malabsorption under control and now I decide when I go to the bathroom, not my guts. I’m 100% confident”.  But then everything changed. I had to cancel a trip to London, to discuss a couple of Crohns research projects, as a journey on public transport was not worth contemplating.

..and of course this inevitably led to the “what’s caused this” question – have I eaten something dodgy? ; is it a virus I’ve picked up? ; is my bile acid malabsorption playing up; or is it the elephant in the room – Crohn’s remission is over, after 8 years, and I’m experiencing a flare?

It has not been unusual to have the odd day or two when things get out of balance but this current bout has been going on for over a week. It has been sufficiently concerning for me to email my gastro consultant to seek his advice. To rule out C-Diff he asked me to get a stool sample and take it to my GP surgery for processing. This might be TMI but I have sought to combat the problem with increased doses of Loperamide and Colesevelam so producing a sample is now taking a while!

Surgery when I was having regular flare-ups the preferred course of action was a high dose of steroids. For many years they proved effective but they stopped working and a meeting with a surgeon was inevitable. Having had surgery once unfortunately does not mean you wouldn’t need it again (as many Crohn’s patients can testify). So lurking in the background there is always the uncertainty that you may need further operations and the disruption that entails. Recovery can take longer as one advances in years.

The End a while back I asked my consultant what the ultimate prognosis was. Should I expect my lifespan to be reduced by Crohn’s. He considered the list of conditions I’ve ended up with and said “It won’t be the Crohn’s that kills you!” Well that was reassuring! So what will finish me off?

I would characterise my view of Crohn’s by saying that it adds further layers of uncertainity to the usual ones we call life. I’ve managed to bury two of the layers quite deeply and they only surface when I’m writing something like this post. I really don’t wander around with a mind full of thoughts of surgery or death. The one that I just can’t bury is the misbehaviour of my digestive system I need a wonder pill that will bring me some certainty – maybe Loperamide.

What should we expect as NHS patients?

Starting with a blank piece of paper I put down the most important things I expect and what I consider to be acceptable timescales. I concentrated on my needs as a hospital outpatient with multiple chronic conditions as this is a situation I find myself in. (I’ve excluded GP’s, as I very rarely see them, and I’m hoping that in-patient hospital stays are few and far between).

Before reading the list below you might like to have a go yourself and then see where we agree or what additional items you’ve come up with. I’ve ended up with 12 key items. Here they are, in no particular order :

  1. Easy to book appointments/tests/procedures and carried out within a reasonable or appropriate time frame (4 weeks?)
  2. Consultants that make you feel welcome and are prepared to spend sufficient time to answer your questions
  3. Consultants who communicate at the appropriate level of detail. (Communication includes the ability to listen and “hear” what is being said)
  4. Consultants who take joint decisions with the patient. (You are the expert in YOUR health, THEY are the experts in their chosen fields and provide the knowledge to inform decisions)
  5. Good co-ordination between multiple consultants if more than one condition is being managed with a named lead consultant who co-ordinates your care
  6. Ability to make suggestions to / ask questions of / get responses from consultants by email
  7. Follow-up letters sent out promptly
  8. Test results communicated promptly (or appointments organised to go through results as soon as they are available)
  9. Appointments that start on time or if they are delayed then patients are told why they are running late and how late
  10. Provision of a disease/condition specific help line with prompt response time (within 24 hours)
  11. Routine appointments over the ‘phone or by Skype (to save on hospital trips and consultant’s time)
  12. Electronic, transferable, whole life health records with electronic patient access

11) and 12) are more long term aims and probably the remit of the NHS as a whole rather than an individual hospital. If there are any blindingly obvious omissions please let me know. You can tweet me at @crohnoid

…and how does my treatment measure up? Having established the list (and the two aspirations) I thought I’d see how my current treatment measures up against each of them.

1) Appointments are easy to book either on the ‘phone or in person but not all departments are consistent in their approach to routine, six monthly appointments. Some give you the appointment letter there and then; others won’t book further than six weeks ahead so I always make a note in my calendar of when I need check that I’m on the six week radar. So far I haven’t had any problems and nowadays you recieve text messages and/or telephone reminders of your forthcoming appointment.

2), 3) and 4) The communication with the various consultants has always been excellent. I’ve never felt I’m being hurried out the door. We always have a full and frank discussion at a level of detail I can cope with.

5) Co-ordination works well. Letters and emails are always copied between the three main consultants and there is a MDM (Multi Disciplinary Meeting) were patients are discussed.

6) I’ve always received prompt responses to my emails. If I have a question that I think may have implications across disciplines then I copy it accordingly.

7) I did have an issue with follow-up letters from one particular department but a simple email to the Head of Department sorted that out. It’s all resolved now and we’re back on track.

8) There have been a few problems with test samples being mislaid or the original sample not being suitable for testing. One of these occurences meant that I had to have a second bone marrow biopsy, not really an experience you would want to go through more than once. The mere mention of the procedure makes my gastro consultant squirm.

9) Late appointments are the biggest problem, made worse by there often being no communication to the patient as to what is going on. These seem to be worse at Guy’s. The new Outpatients Dept. at St.Thomas’ has large screens all around the waiting area and these carry messages if any clinics are running more than 30 minutes late (although this isn’t always the case).

10) I’ve only had reason to contact the IBD and Stoma helplines. Both have replied very quickly. When I had a problem with my stoma I was able to go and see one of the nurses the same day.

11) Video appointments are more an aspiration than something I think will happen in the very near future. I don’t know at what level the decision has to be taken to implement it –  Departmental ; Hospital Trust; or from the NHS on high.

12) The electronic medical records system works within the Guys/St.Thomas’ (GSTT) itself but they do not have access to my previous records held in Croydon and East Surrey Health Authorities. This was brought home to me when I was admitted to my local hospital. Fortunately I had taken it upon myself to collate this information and was able to pass the key facts to the A&E Registrar and prevent a lot of uneccesary tests that would have just confirmed already known about conditions.

Conclusion

I’m very impressed with the treatment I receive from the NHS at GSTT but it is let down by the lack of communication when outpatient clinics are running late. In the original version of this post (2014)  I gave them a score of 9 out of 10 but now I would reduce this to 8 out of 10 simply due to poor communication on late running clinics (2018).

I have had the odd hiccup along the way but by taking an active role in managing my treatment they have quickly been sorted out and never caused a problem.

DIARY – Crohn’s, blood clots and low platelets

September 2013

Medically things are going OK-ish. I don’t want to tempt fate by putting it any more strongly than that.  I still have a sporadic, niggly pain around the site of my anastomosis (the bit where they joined my gut back together again in June 2011). This has been ongoing for quite a while and gets worse when I’ve been doing a lot of physical work, worn a belt too tightly or have been on my feet for a long time. My consultant thinks it’s purely mechanical and nothing to worry about.

Between now and Christmas I have four outpatient appointments and will have a chance to practice what I preach using my 8 point approach to “Managing Consultants and Appointments”.

(1) Making a List
(2) Manage Your Appointments
(3) Continuity
(4) Medical History (including copies of any recent emails)
(5) Contacting your consultant between appointments
(6) Follow-up letters
(7) Manage Your Appointments 2
(8) Keep a sense of humour

(There’s a separate post which goes into the detail if you are interested. It should be obvious which one it is – the clue is in its title).

Wednesday 25th September 2013 – Haematology Appointment – Guy’s

 The Background

This was to have been the sign-off appointment where I got handed back to gastroenterology. The “elephant in the room” however is thrombocytopenia – the relative decrease of platelets in the blood. A normal value is anywhere between 150 and 400, I’ve been well below 100 (hovering around the 60 mark) for quite a while now but not exhibited any obvious adverse effects such as bleeding profusely if I cut myself. We had decided to park the issue but when I re-read my notes from the last gastro appointment, and the subsequent follow-up letter (6) , they said that my GI would not put me on a maintenance dose of Azathioprine because it may have caused the thrombocytopenia.

That meant one less route available to me should (when) I need to start drug therapy again to control the Crohn’s. In my last post I mentioned that I would email my GI consultant (5) to ask if he was happy that this issue would remain unresolved. I sent the following and copied in to the haematologist :

“I have my next haematology appointment on Wednesday week. At the last one it was suggested that I could then be discharged back to your care, as we have done with hepatology. The fewer clinics I have to attend the better but I have one question for you regarding my thrombocytopenia from a Crohn’s standpoint.

Because I am asymptomatic and there are many possible causes of the low platelets we have “parked” further investigation. When I saw you at the end of June, we discussed Crohn’s remission and the use of Azathioprine as a maintenance drug but you said you would not want to prescribe it because of the low platelets. Will the non-resolution of the platelets preclude the use of any other potential medications that might be needed if my Crohn’s starts to deteriorate? Is Azathioprine ruled out by low platelets regardless of the cause?”

Early the next morning I received a response from the haematologist :

“Having read this email – I think we do need to go ahead and finally do the bone marrow test to see if we can be  more definitive about the cause for your low platelet count as this is having an impact on your treatment options. We can discuss it when I see you on Wednesday.”

The Appointment

For haematology appointments it’s worth turning up half an hour early as they always take a blood sample and have the results available during your consultation. I booked in and then took a seat. Within 5 minutes I was called by the phlebotomist and had a blood sample taken. It was then back to the seating area, ready for a long wait. After another 10 minutes I heard my name being called. A doctor I hadn’t seen before introduced herself and apologised for keeping me waiting even though I was being seen 15 minutes early. My usual consultant was on holiday so no point in asking “for continuity” (3) and anyway I had already decided that I would be happy to be seen by whichever doctor I was allocated.

As we entered the consulting room I showed her my list (1)(6) and explained I had a few questions to ask. She had started reading my notes but they didn’t include a copy of the recent email correspondence so she was unaware that I was to have a bone marrow biopsy. Luckily I had a copy of the emails on my phone so she was able to read them for herself.

We went through the causes of low platelet counts – increased destruction ie. the body is producing sufficient platelets but something is destroying a number of them, possibly drug induced; or decreased production ie. the body isn’t producing the right number in the first place and could be down to bone marrow failure. The biopsy would help to focus the investigation. (I suppose it could be a combination of both but we’ll cross that bridge….).

We also discussed some other factors which I’m still struggling to understand. I have an enlarged spleen (splenomegaly) – what caused that? Enlarged spleens can hold increased numbers of platelets and therefore lower the number in circulation and the number that get counted. Then there’s the blood clot in my portal vein (PVT – Portal Vein Thrombosis). Did this cause the spleen to enlarge? The doctor remarked that blood clots in this location were common in Crohn’s patients and it was plausible that the clot could have been there since my emergency operation in 1979 as the liver specialist suggested. I asked why it hadn’t shown up on the various x-rays and scans that I had had over the years. She replied that unless the radiologist was specifically looking in that area it would be easy to overlook. Unfortunately the x-rays up to the year 2000 are no longer available. There is a CT scan from 2009…..but this is all rather academic.

By now the results from the blood test appeared on the system – platelets 60, the lowest ever, but white cell and red cell counts normal. This suggested a platelet specific problem, not a general blood disorder.

We went though my list :

1) What involved in a bone marrow biopsy? It’s carried out under local anaesthetic by introducing a needle into the hip bone (?) and taking a small sample of marrow and then using a slightly larger needle to take a small core. Will it hurt? You’ve got Crohn’s disease and had surgery so you’re used to pain. The most uncomfortable bit is injecting the local anaesthetic. Some patients don’t even feel the biopsy needles being introduced.

2) Do I need to take any special precautions if I have teeth extracted? Unless your platelets fall below 50 then extraction should be OK. You might want to have a clotting gel available to stop your gums from bleeding. If your dentist is worried he might want to refer you to the specialist Dental School at Guys.

3) How regular should I be having blood tests and are there any special things to test for? Six monthly at your outpatient appointments is fine. You could ask your GP for more frequent ones. The only special test would be for clotting.

4) Is there any possible link between low platelets and diet? (A bit of a long shot this one but I due to see the dietician in a couple of weeks time). No.

Back to reception to book the biopsy and the follow-up appointment. I was offered the biopsy for the next morning. Unfortunately I wasn’t going to be in London so declined. “We have a slot at 3.00pm next Wednesday, is that any good?”. Excellent and the follow-up appointment was set for the week before Christmas.

The next day I got a phone call from the doctor asking me to forward a copy of the email correspondence for inclusion on my file. I told her that the biopsy was planned for one week’s time and she sounded genuinely surprised it was so soon. I mentioned that the follow-up appointment wasn’t until December and wondered if it should be brought forward. She assured me that once the biopsy results were available she would be in contact with their findings. Roll on the biopsy.

Wednesday 2nd October – Bone Marrow Biopsy

The procedure was planned for 3:00pm. 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 but I remembered what the haematologist had said last week “You’ve got Crohn’s. You’ve had operations. You’ve dealt with pain! This will be nothing by comparison.”

Guy’s Hospital in the shadow of The Shard

I set off in good time, (if you’ve read any other posts you will know that I always do), and arrived at Guy’s twenty minutes early, checked in 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 ay 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 slides

The aim is to get a liquid sample (aspirate) 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 cheesemaker 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.

24th October – “Please relax this weekend”

I had added a reminder into my calendar to email the consultant after 5 weeks and ask if there had been any news. I needn’t have bothered as they were already “on my case”.

On 24th October I received an email saying “your bone marrow is being discussed with the Histopathologist and Dr. xxxxx will write to you with the results. We will see you in clinic in December.” Straight onto Wikipedia and I now know that a Histopathologist is someone who carries out “microscopic examination of tissue in order to study the manifestations of disease”.

I replied by asking if, once the discussions had been concluded, they could email me with an indication of what they had found  I explained that I had rescheduled my appointment for the end of November so that it preceded my Gastro appointment in early December. Last Friday I received another email saying that it would be easier to discuss the findings in clinic. Whoa. Did that mean – nothing to worry about, it can wait; or it’s serious and we want to tell you face to face?

I’m pretty laid back about my health nowadays. I’ve had enough shocks along the way to just accept whatever will be will be but I was starting to get an uneasy feeling. There was no way I would relax over the weekend knowing that the results had been assessed but I was in the dark. Time for another email “…I wonder if you could just put my mind at rest that you haven’t found anything too serious otherwise I won’t be able to relax this weekend!”

Within a few minutes this came back :

“Please relax this weekend. We have reviewed your bone marrow in our multi-disciplinary meeting and there is nothing sinister to report. The findings suggest that your marrow is underproducing platelets rather than it being an immune cause that we had presumed secondary to your longstanding history of Crohn’s. This may be due to previous Azathioprine use…….I look forward to seeing you on 20th November and we can discuss this in person and in more details then. In the meantime – I hope this reassures you.”

I thanked the doctor for her prompt response. I can relax until I see her on 20th November, apart from having to go to work, commuting to London and worrying what effect the fireworks will have on our dog and ponies. (Cut to gratuitous picture of dog and ponies for light relief)

Next stop – 12th November – upper GI endoscopy to see if my esophageal varices have regrown and to band them if necessary. Obviously I’m hoping that they find nothing as you can only eat sloppy food for four days after any banding otherwise the food might dislodge them. For what happened please see the post entitled “Upper GI Endoscopy”.

Haematology – 20th November 2013  Today’s appointment was to go through my bone marrow biopsy results. Even though I had already had the email a couple of weeks back telling me that there was “nothing sinister to report” but it was always at the back of my mind that there might be something significant that needs discussing face-to-face.

I got to the clinic early to allow time for the obligatory blood test. With that over I settled down to wait for one of the consultants. After 15 minutes my usual doctor collected me and we went into a consulting room. She started our conversation with “Yours is not a simple case…..”.

She had printed out two biopsy reports – one for the recent bone marrow procedure and the other for last year’s liver biopsy (which I had not seen before – more of that later).

The bone marrow results had been discussed at the MDM (multi-disciplinary meeting) and the initial conclusion was that they were “in keeping with early/low myelodysplastic syndrome, histologically suggesting MDS-RCMD.” She knew that I would have looked this up on the net and then probably have been worried/distracted by the potential links with leukemia. That’s why the report hadn’t been emailed to me.

(This is a quote about MDS from patient.co.uk – “The disease course is highly variable, from indolent to aggressive with swift progression to acute myeloid leukaemia (AML) in 30% of cases.” I think she made the right decision to want to discuss it in person.)

She went on to say that she was not completely happy with the MDS conclusion because a bone marrow biopsy looks at two substances – the marrow itself and the aspirate, that’s the bone marrow liquid. When I had the original procedure the doctor said that she was not getting good aspirate slides as the blood in the samples kept clotting. After several attempts, but with little success, she decided to concentrate on taking a good bone marrow core.

“It’s like having a three piece jigsaw from which two pieces were missing.” So at the next MDM they had discussed the results again and decided that, in my case, it was unlikely to be MDS but would recommend a further biopsy to get useable aspirate samples. “How would I feel about this?” I replied I really wasn’t fussed, the most painful bit was the initial injection of local anaesthetic. If it would help narrow down the diagnosis then the sooner the better. She explained that this time they would use Heparin with the sample needle as this should prevent the blood from clotting.

If the diagnosis wasn’t MDS then why the low platelets? The most likely cause was a combination of long term Crohn’s and taking Azathioprine. The biopsy had shown that the marrow was under-producing platelets rather than being over active and eating them up. I was unaware that there is a potential link between Crohn’s and bone marrow. (I’ll do some further reading up on that one)

Using my blood results I’ve plotted my platelet count vs. Azathioprine dose (click to enlarge)

They had then gone on to discuss what the implications for treatment would be if it was/was not MDS. In either case the preferred course for treatment, at this stage, would be “do nothing” unless I was to have any procedures that could cause bleeding or that require surgery. A supply of platelets should be made available if either of these were needed. The difference in approaches would be in the monitoring regimes and we would discuss this further after the next biopsy results were available.

Back to reception to book up another biopsy (9th December) and 3 month follow-up appointment.

Included with the Haematology Report was one from my Liver Biopsy – if I thought blood was complicated then reading this report is mind boggling. I haven’t even tried translating it into easy-to-understand terms. Here’s a sample :

“Features of cholangiopathy, with slight cholangiocyte disarray, occasional juxtaportal hepatocytes containing copper-binding protein deposits, and scattered ceroid-laden macrophages in portal tracts. Patchy mild portal-tract fibrosis with perisinusoidal extension and early spurring. Macrovesicular steatosis of hepatocytes (5% of parenchyma). Slight centrilobular sinusoidal ectasia noted. Crohn’s disease with splenic vein block (clinical diagnosis), see comment. An early stage of primary sclerosing cholangitis is a possibility. Correlation with imaging-study findings appears in order. I can not suggest an aetiology for the slight sinusoidal ectasia observed.” 

Next Appointment – 2nd December to see my gastro-enterologist. Will be interesting how all these strands come together.  I’ll also get the result of the calprotectin test that was done recently. It will be a good pointer as to whether my Crohn’s is active/inactive and consequently what the future treatment plan is likely to involve. If it is still in remission then is it better to continue without any medication for as long as possible or would it be better to start taking precautionary doses? I get the feeling that the answer won’t be a simple one.

If you’ve looked at some of my earlier posts you may have read about the problem I have had with not getting  follow-up letters out of Haematology in a timely manner. This was brought home to me when I saw my gastro-enterologist last Monday (2nd December). He was unaware that I had seen the haematologist to discuss the results of original biopsy; that there were implications for restarting Azathioprine; that a second procedure had been arranged and all because there was no letter detailing all this on my file. (He very helpfully went on to say that a bone marrow biopsy was the one test he really wouldn’t want to go through himself!).

9th December – Haematology Day Unit – Guy’s Hospital

Biopsy II Day. A beautiful, sunny winter’s day. Took the District Line down to Monument and then a stroll over London Bridge, underneath The Shard and on to Guy’s Hospital.

The Thames from London Bridge

 

The Shard appears to have grown arms

I arrived in plenty of time, was wristbanded and waited for a doctor. She appeared a short while later and I was taken to a cubicle in the day ward. She went through the usual risk review and got me to sign the consent form.

Then, for the second time, the value of follow-up letters became apparent. The doctor had referred to my notes and found the latest letter on file, dated September. She was unaware of what had happened in the interim, that this was to be a second sample attempt but with no need for a marrow core this time. It’s a good thing that I had taken this all in, together with the plan to use Heparin to stop the blood from clotting otherwise it would have been back to square one and a third biopsy. (Whilst this blog sometimes goes into too much detail it is proving useful when follow-up letters aren’t forthcoming and I want to recall what we said at an appointment)

She went off to find the Heparin. When she returned she laid out the various bits of equipment – swabs, needles, instruments of torture, local anaesthetic etc. She got me to arrange my clothes so she could access my hipbone and to ensure any leakage missed them. I then rolled onto my left hand side and draw my knees up onto my chest.

Instruments of torture (luckily the largest one wasn’t needed)

Last time it was the local anaesthetic injections that stung the most but this time they were outdone by the sample needle. I think a couple more minutes to allow the anaesthetic to work and it would have been fine. She looked at the first slides but they weren’t quite as she wanted, probably due to the Heparin. She asked if it was OK to go back in with another needle to get a second sample. This time I felt nothing apart from a liquid trickling down my back. It could only be blood. Slightly unnerving. Clearly the Heparin had worked. She was now happy with the slides and showed me what they were looking for. To prove how truly sad I am I asked her if I could take a picture of a “correct” slide.

This slide was the one chosen for further examination

She cleaned up the “leakage” and put a dressing over the puncture. It was then a 15 minute wait, lying on my back, to ensure everything had started to seal itself. She warned me that it was likely to need a new dressing before I left hospital due to the action of the Heparin. After 15 minutes a nurse came and changed the dressing and I was allowed to go back to work.

Now I have to wait for the results. Can’t believe it – I forgot to ask how long that process would take. Must also chase up the follow-up letter but quite frankly I’ve had enough of appointments and procedures for this year. I just want to chill out and try and forget about medical matters. The follow-up appointment is set for 19th February.

Wednesday 19th February – Haematology II – Guy’s Hospital

The first appointment of the year and really unprepared for it. It’s only two months since the last one but I’ve already got out of the habit. Traveling up to the London on the train in the morning I realised I hadn’t even got a list of questions to ask. When I got to my office I printed off the account of my last trip to Haematology, just to jog my memory (see post – “Bone Marrow Biopsies, Follow-up and Results…well sort of”). I then re-read the post “Managing Consultants and Appointments” to make sure I put into practise what I preach. By the time I set off for Guy’s Hospital I had managed to write down 7 things I needed to ask or mention on a good, old fashioned Post-It note.

List of questions for Haematology

Appointment was for 10:00am so arrived 15 minutes early for the obligatory blood test. The phlebotomist asked me if I knew why she was also taking a “histological” sample, but I didn’t.

Back to the waiting area and at 10:00am my usual doctor appeared, greeted me warmly and we set off for a consulting room. She introduced me to an American medical student, who was over in the UK to see how things are done in the NHS, and checked that I was OK with someone else present during the consultation.

She explained that after the last bone marrow biopsy one of the samples, which should have gone for histological testing, had either been mislaid or mislabelled so did not make it to the histologist. This is why she had rung me a few weeks back to explain the situation. She had however looked at the other slides from the second biopsy and these were fine. She had discussed the missing sample with the chief histologist and he suggested doing a particular type of blood test which had proved to be 60% effective in spotting problems, if there were any. The results would be available in a week’s time. The alternative was to have a third bone marrow biopsy but they didn’t want me to put me through that again. I’m really not that fussed.

…and so to the list :

1) Long term prognosis – will not affect the other  issues I have – Crohn’s, potential PSC, PVT. Must avoid use of Azathioprine in the future. Today’s platelet count = 74, an increase of 18, but don’t get hung up on the numbers as I am currently asymptomatic ie. I don’t bleed profusely if I cut myself.

2) Cause of low platelets – no signs of any marrow abnormalities which could have pointed to a more sinister conclusion ie. leukaemia therefore cause is drug induced – long term use of Azathioprine.

3), 4) and 6) Treatment – none required but look out for any signs of starting to bleed more easily. Six monthly blood tests and outpatient appointments. A platelet count of 50 is the threshold for having minor surgery or teeth extraction so no need for special measures at present.

5) Medical Synopsis – some inaccuracies had crept into the synopsis at the top of the last follow-up letter. I wasn’t sure if they were significant but we went through them one-by-one and put them right. (I had already emailed my gastro consultant a few weeks back with the correct information)

7) Follow-up Letters – this was an area where we had had issues in the past. I requested that follow-up letters were sent out as soon as possible after an appointment as the last time I saw my gastro consultant he was unaware of my bone marrow biopsy etc. She promised to improve the timing in future and would write to me as soon as the histological results were back.

I mentioned that as part of the NHS Change Day (3rd March 2014) I had pledged to give feedback to my consultants on the service they provide (whether they wanted it or not!). This was my first chance to put the pledge into action. She thanked me for my feedback.

10:20am appointment completed and on way back to work

SUMMING UP

The low platelet issue had originally been “parked” but in September 2013 I felt that we really should investigate it further so we could decide if Azathioprine would still a viable drug for treating my Crohn’s and  to make sure there wasn’t a  more serious underlying problem. My gastro consultant supported this and the investigation started.

Two bone marrow biopsies later and we have the answer. The low platelets are not indicative of a bone marrow abnormality but are drug induced with the likely cause being to 8+ years of Azathioprine. It is a known side effect of this drug. Azathioprine is sometimes used to maintain Crohn’s remission but if I get to the point where I need to go back on medication it will not be considered as an option.

The low platelets can return to their parking bay.

…and the implications for other Azathioprine users? The above is just MY experience of taking that drug and as we all react differently to medications you should not assume you will end up in the same situation. Whilst I stopped taking it when we realised there was a potential problem it has not damaged my bone marrow sufficiently to need to take further action. The haematologist described it as like having a “four cylinder engine but only running on three”. Would I have agreed to starting Azathioprine back in 1998 if I knew then what I know now? Yes. For nearly ten years it kept surgery at bay so that when the knife became inevitable I was in a much better position both financially and mentally to cope.

 

20 things that can help you survive Hospital

Here’s my list of twenty things that have made my stays in hospital (UK NHS – 2 bowel operations; 1 emergency admission with 2 weeks recovery; 1 day/night in A&E) more bearable. I wanted to pass them on in case it helps to improve your “patient” experience. If you’re already an old hand at the hospital game you can, no doubt, add at least another ten.

No.1 HEADPHONES – unless you are lucky enough to have your own private room then the hospital environment will be noisy. There are lots of times when you really want to be able to drown out the surrounding ward noise. I like to take with me two pairs of headphones – in ear and over ear. Over ear will give you the best isolation from the ward noises but you can’t comfortably lie on one side with them on and your ears tend to get hot! The in-ear ones aren’t as good for keeping out external sounds but you have more choice in your sleeping position. (If you can afford a good set of noise cancelling headphones then all the better)

No.2 iPOD OR SIMILAR – I know that most phones have the ability to store and play music tracks but to prevent running the battery down too quickly I prefer to take a separate music player.

No.3 EYE MASK – like the ones you have for air travel. It’s very rare to have all the lights off in a ward and even if they are, the nurses will be frequently checking on the more poorly patients so the over bed spotlights will be going on and off throughout the night. That’s where the mask comes into its own. (Our local hospital has taken the initiative and started handing these out to patients.)

The best time for dozing is mid-morning, after the doctors have done the ward round and you’ve had a washdown/shower and your bed is freshly made. A close second is early afternoon before visiting time starts.

No.4 SHOWER GEL/SHAMPOO – sometimes these are available in the hospital but there’s nothing like having your own, favourite brand to keep you in touch with home. It’s said that smell is the strongest sense for recalling memories. There is one particular shower gel that I bought ready to go into St.Thomas’ and I’m still using that “flavour” today. Every time I catch that fragrance it immediately transports me back to the first shower I had post operation.

No.5 PYJAMAS AND DRESSING GOWN – the admission instructions may ask you to bring in your night clothes but I have found that pyjamas are usually available anyway. That’s fine if you’re not fussed about the colour. After my reversal operation I was issued with bright orange pyjamas, Guantanamo Bay style. I try and use NHS pyjamas for a few days after an operation in order to give anything that might be oozing a chance to stop oozing and then it’s into my very stylish M and S ones for the rest of the stay.

The dressing gown is a must. Not only can it give you a bit of extra warmth when sitting about but also covers up that embarrassing gap at the back of your medical gown where you haven’t quite managed to fasten the tie-ups.

No.6 BOOKS AND MAGAZINES – there will be times when you’re not dozing but you really don’t want to a) watch the truly appalling daytime TV, or b) you’ve gone boss-eyed from staring at your phone for a little too long, or c) someone has made a comment on your Facebook that has upset you. A decent book or some magazines, preferably with lots of photos and no difficult text, are good ways to pass the time at your pace. I was given a volume of Sherlock Holmes short stories and found that each story was just the right length for reading before needing a rest.

No.7 CASH – taking a large amount in with you is not a good idea but it is worth having, say, ten pounds in case you want to buy a magazine or some toileteries from the trolley that visits the ward every couple of days.

No.8 MAKE-UP – for anyone who likes to wear make-up (I’ve done the “Political Correctness and Inclusivity” Course) I’m told it can make a big difference. I’m a bit out of my depth here so I’ll quote directly from a comment a fellow patient sent me  :

“I think this is probably a bit more on the girly end of things, but I’ve found that taking good care of myself (when possible of course) in hospital helps keep my morale up. I think the sicker you look, the sicker you feel, so if you have the energy it’s worth making a little effort. I bring my nice robe so I don’t need to wear the hospital gown, my favourite perfume, and my own shower stuff in little bottles. I bring a tiny bit of make up so that when people visit I don’t need to deal with them telling me how tired I look (I’m in the hospital, duh!) Bottom line, having your own things makes everything feel better.”

No.9 FAVOURITE SNACKS
– after an operation or maybe a bad flare-up you may need something to help you get your appetite back. If you have some favourite snacks or chocolate bars etc. pack a few in your bag. Some hospitals will provide snacks anyway but I don’t know how common that is. The two wards I spent time in at St.Thomas’ always had a good selection freely available, at any time. You only had to ask!

No.10 SANITISING WIPES
– with all the nasty infections that can appear in hospitals nowadays – such as Mrs.A – you may want some sanitizing wipes to for any surfaces or objects that you can’t be certain have been throroughly cleaned or disinfected.

No.11 HAND CREAM AND LIP BALM
– the atmosphere in the wards is often very dry so creams and balms will help you keep your skin feeling good.

No.12 OVER BED ENTERTAINMENT UNITS – I’m not sure how widely these entertainment units have been rolled out in NHS hospitals. If you are going in for elective surgery it’s worth ringing the hospital or checking their website to find out if they have them over each bed.

The units provide a variety of services – some free; some paid for. It varies from hospital to hospital. In both St.Thomas’ and East Surrey hospitals, local outgoing telephone calls are free, as is the radio. If you want to watch TV, access the internet or play games you have to pay for those services (but I suppose if you have a tablet and there’s good 3G/4G access you won’t need any of this). The fee for 2 weeks worked out a lot cheaper per day than buying each 24 hours at a time. The trick is predicting how long you will be in for.

The over-bed units should have their own headphones supplied but these are usually very flimsy i.e. not good at keeping sound out or missing.  I’ve found using my own headphones a better bet.

No.13 LISTS – pen and paper – or you could use an app on your phone or tablet. I have always found it useful to write down any questions I want to ask the consultants on their ward rounds. I’ve tried keeping a list in my head but when you are confronted by the consultant and a gaggle of junior doctors, early in the morning, it’s easy for all thoughts to just disappear.

No.14 CANNULAS
– if you have to have a cannula and, let’s face it, it’s pretty much a certainty, don’t let a doctor put it in. No matter how much practice they claim to have had they are never, ever, as good as an experienced nurse. In the past I have actually said to a doctor “Are you sure you are good at inserting these things?” He assured me that he was but an hour later I had to have it redone as there was insufficient flow through it. This has happened on several occasions so I stand by my “never trust a doctor with a cannula” statement.

The positioning of the cannula is governed by where a good vein can be found but if at all possible try and avoid having it on the bend of the arm as you will frequently be interrupting the flow when you move your arm. If you get a choice of which arm to put it in remember you will have eat meals and manage in the bathroom with it connected.

No.15 PHARMACISTS
– when it’s time to be discharged I can guarantee that you will be ready to go but will then have to wait several hours whilst pharmacy get the correct medications up to the Ward and you can finally leave. If you make friends with pharmacist on their daily ward rounds you can pre-empt that wait by persuading them to make sure the necessary tablets, in the correct numbers, are in your bedside locker ready for discharge. They are also the best person to talk to about any new medications you’ve been prescribed and possible interactions.

(If you live near the hospital you may be able to go home and then get someone to return later to pick up your medication. You may even find that you’re being prescribed over-the-counter tablets anyway, such as paracetamol or Ibuprofen, so it would be quicker to go into your chemist.)

No.16 PAIN – if you start feeling pain or a different pain don’t be brave and keep it to yourself TELL THE NURSE. It may be nothing and you can be given painkillers to help. On the other hand it could be something that needs attention and the sooner that attention starts the better.

No.17 INHIBITIONS
– try and lose any inhibitions you may have about discussing the more intimate details of your condition with the medical staff. You may notice something different about your body or what comes out of it. Again it may be nothing or it might need further investigation.

No.18 SUSPEND NORMALITY – the hospital environment is very different from your usual environment. Sometimes you may feel completely out of your comfort zone. If you can get into the mindset of suspending your normality and accepting a different regime then your hospital stay should be more bearable.

No.19 WHAT HAPPENS IN HOSPITAL STAYS IN HOSPITAL – not everyone will appreciate your description of the procedure or surgery you have just undergone. If you want to go into the gorier details then best avoid regaling your visitors with them or your friends when you get home. If you really must unburden yourself then try one of the Forums or Facebook Groups that is dedicated to your condition as you will find a, mostly, willing audience.

No.20 SENSE OF HUMOUR/COURTESY – not always easy to keep hold of this when you’re high on drugs, have tubes coming out of every orifice and your future is uncertain but if you can do your best to keep your sense of humour and treat the doctors, nurses and other patients with courtesy then it will make your stay a lot more bearable. Of course you may be one of those unlucky individuals who has had a humour bypass in which case you should get on well with some of the doctors I’ve met!

That’s the revised Top Twenty (One). If I was being rushed into hospital and only had time to choose just one physical item to take in with me it would be the headphones as they give you the best chance of getting some sleep in a noisy environment. The one behaviour I would adopt is a combination of the above but can be summed up as “acceptance that a hospital regime will probably be completely alien to your usual way of life but you do not need to lose your sense of dignity, humour or courtesy”. If you feel any of these are being compromised – complain.

My automedicography – a personal view