Tuesday, 9 December 2014

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.

Wednesday, 3 December 2014

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. 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.

Wednesday, 12 November 2014

Crohn's Disease - DIARY - Endoscopy

This is the 8th endoscopy/banding session since June 2012. You'd think by now I'd be an old hand at it. Of all the tests/procedures I've undergone I'd stick this high on the list of unpleasantness.

Monday 10th November 2014 - Endoscopy Day

All my previous appointments had been early morning affairs but this one was set for the afternoon - 2:00pm. We arrived at St.Thomas' 30 minutes early, after a short walk up from Waterloo Station. The new Endoscopy Suite is on the first floor, with the waiting area overlooking the Houses of Parliament.
Arriving at St.Thomas' Endoscopy Suite
I booked in and we'd only been sitting there for a few minutes when I was called in by a nurse to run through the pre-procedure checklist -

Have you got someone with you to escort you home? Yes, my wife
Do you know what is involved in this procedure? Yes, I've had it before
When did you last eat or drink?  7 o'clock this morning
What medications are you on? Omeprazole, Propanolol, Loperamide
Are you having sedation? Yes

Answering "Yes" to the last question meant needing a cannula. The nurse chose a good vein and it was inserted without any fuss. She explained that there was one other patient ahead of me but they were having both an endoscopy and colonoscopy in one go and it would be quite a lengthy procedure. I said that I hoped the two cameras didn't meet, which I thought was quite amusing, but she replied that they are done separately and I just looked stupid. That will teach me to try and be funny.
Cannula
I was shown to the waiting room and my wife was told to come back and get me in 2 hours time. She wandered off up Whitehall to the National Gallery to see some of her favourite paintings.
The Cenotaph in readiness for Remembrance Day
Back in the waiting room another nurse appeared to explain what was causing the delay to my procedure and that I would be seen shortly. He described the patient ahead of me as being "topped and tailed". He asked if I had seen a doctor yet to which I replied "No". After another few minutes the doctor duly arrived and briefly ran through the risks before asking me to sign the consent form. One thing he said, which I hadn't been told before, was that the risk of the varices bleeding was at its greatest around a week after the procedure at which point the banded section should have formed scabs.

I was then lead into the Procedure Room where three nurses were waiting and I lay down on the bed. I explained that I had one request - "please don't put the gag in until I'm about to go under". One of the nurses, who was looking at me in a strange way, asked "what gag?" I explained is was the green, plastic object which goes between your teeth to protect them and stop you biting the endoscope. "Oh the mouthguard. When you said gag... well let's not go there!"

Time for the Xylocaine spray - a local anaesthetic that tastes of burnt bananas and deadens the back of the throat.  This was the bit I was dreading as just the thought of the spray makes me want to retch. It wasn't too bad! Next the oxygen supply was positioned under my nose and I was asked to roll onto my left side.

Now the bit I was looking forward to - sedation. The doctor injected two syringes of Midazolam and Fentanyl. One of the nurses was stroking my head, telling me to concentrate on my breathing to visualise something pleasant. At this point I expected to slip away into temporary darkness....

For previous procedures I have been put out cold and then woken up in Recovery. This time I was aware of what was going on and must have been awake, although very drowsy. I managed to take a photo of the endoscope but don't remember doing it! Sad on both counts.
Endoscope
I spent a while in Recovery and then walked round to another waiting area where my wife joined me. A nurse removed my cannula and gave me a copy of the Endoscpy Report. They had found two large varices which had been banded. Bad news as I was hoping they had not grown any worse since last year. Worse news - I need a further procedure in 4 weeks time to see how successful this banding session was.
Endoscopy Report - but no pictures taken
We made our way back to the train station and then had a lift home. I spent most of the evening asleep. I don't know why I feel so weak this time. The whole procedure has hit me for six. I was pleased with the advice not to go to work the following day but extended it a further day as I really didn't feel up to traveling up to London to work.

It's left me wondering if the varices will continue to grow at their current pace and that the time between procedures is going to get less and less. A question for the doctor in 4 weeks time

Tuesday, 11 November 2014

Crohn's Disease - DIARY - Ultrasound

For those IBD sufferers reading this post I have a question - what's the first thing you do when waking up in the morning? Within the first few seconds is how well behaved does my digestive system feels today? From that I can work out how long I have for breakfast, how long in the bathroom and whether I'm OK to venture out onto public transport for the commute to work.

Tuesday 4th November 2014 - Ultrasound Day

In a previous post I mentioned that, a few weeks ago, I had suddenly experienced a very severe pain in my lower back. Only on the left side and bad enough to concern me. I mentioned it to my consultant when I saw him recently and he booked me in for an ultrasound scan. Today was the day.

Knowing I would be leaving work at lunchtime it only seemed fair to make the effort to get in early and make up some of the time. My waking assessment was - digestive system OK but probably wouldn't want to get delayed en route. With a little bit of effort I managed to catch the 5:40 train to London.

We made it to just outside the little, urban hamlet of Norbury and by then the train was traveling very slowly. As we pulled into the station we came to a halt. The guard announced that there was a track problem ahead and he didn't know how long we would be waiting there. I immediately felt something stir in my guts. This was crazy as I was OK until the announcement but there seems little I can do to break this reaction. I tried analysing my reaction, looking at the situation rationally but that "what if I need to get to the bathroom quickly" thought overrode everything. Whilst I was still contemplating this question and formulating a plan, the guard announced that the train would be going no further and that we should all disembark, making our way to another platform.

That was enough to distract me and we slowly made our way to the new platform. Amazingly another London bound train arrived, with empty seats and the journey continued uneventfully, I've read a number of accounts recently of Crohn's sufferers having "accidents" whilst out in public and this non-incident with the train brought home just how easy it would have been for a normal day to transform into a very confidence destroying experience. The Joy of Crohn's.......
One of my regular views on the way to work Waterloo Bridge looking NE
The instructions that came with the Ultrasound letter said drink 1 to 2 pints of water at least one hour before your appointment (2:00 pm) and arrive at the Hospital with a full bladder. Have you tried this? For the last scan, back in 2008 at East Surrey Hospital, I had been asked to arrive 1 hour early and drink 2 jugs of water there. Probably a better idea really.

Anyway, I kept drinking water from mid-morning onwards and tried to retain as much as I could. I set of on the 45 minute walk to Guy's Hospital on the basis that it would keep my mind off of my bladder. The gloomy morning had turned into a beautiful day and I made sure my route took me past St.Paul's Cathedral. So far so good. Plenty of distractions.
St.Paul's Cathedral facade
By the time I had crossed London Bridge and was approaching Guy's I was getting desperate. Full bladder + 45 minute walk may not have been such a good idea.
Guy's Hospital nestling behind The Shard
I found my way up to the 2nd Floor Ultrasound Dept. and told to take a seat in the waiting area. I felt I was going to burst so asked one of the nurses if a full bladder was really necessary for a kidney scan. She replied that it was and the doctor had just arrived so would see me shortly. If I went off to the bathroom I would then need to drink more water and wait another 30 minutes. She said that walking up and down the corridor might help. Shortly afterwards I heard her explain to the doctor that I was desperate.

He called me in and said "I'll scan your bladder first - should take 30 seconds - and then you can go to the bathroom". He did scan my bladder and complimented me on how much I had managed to hold in. Time to let it out. A huge relief.

The scan continued around my abdomen. My consultant had told me to ask about ascites (accumulation of fluid in the peritoneal cavity) so the search went a little further up. A couple of minutes later the procedure was over and the doctor revealed what he had found......"Nothing, apart from one gallstone". Half of me was relieved; the other half was disappointed that no kidney stones had shown up. It left the question of what had caused the original pain unanswered together with the bloating issue. More questions for my next GI appointment.
Ultrasound machine
As I was about to leave the scanner room I asked if I could take a picture of the machine to illustrate this blog. He very kindly called up the screen showing multiple scans and commented that he liked patients that took an active interest in their treatment.

Next stop - St.Thomas', 10th November, Endoscopy.......

Saturday, 4 October 2014

Crohn's Disease - DIARY - Let's Talk BAM, amongst other things

Started writing this whilst waiting in East Surrey A and E for a bed in the Acute Medical Unit. No, not for me this time, but for my mother-in-law who had a fall. Not what we had planned to do that evening. Brings back a lot of memories.....

...and something else that didn't go to plan...

Saturday 27th September 2014 - Today I did something I can't remember doing before - setting off on a journey and then having to turn back. We got as far as the M25 when I suddenly felt the need to visit the bathroom and at the same time a pain started in my lower left back. The pain got worse and worse. We made it to the new services, just beyond Leatherhead, and by now I was starting to get scared. Off to the bathroom. Didn't need to go but pain not easing. Back to the car hoping that sitting down again the pain might ease slightly but no, started spreading up the left side of my back. Decided there was no point in sitting there hoping for an improvement so we set off for home. I really didn't think I would make it. Driving the last couple of miles the pain was becoming unbearable but we did make it.

I immediately took a couple of paracetamol and filled a hot water bottle. I lay on the sofa with the hot water bottle on my back and over the space of the next couple of hours the pain melted away and didn't return. Could it have been a small kidney stone? By Sunday I was digging in the garden, planting shrubs in a new bed.

....and now the subject I had intended to start with - BAM. If you read my last post I have been diagnosed with severe Bile Acid Malabsorption. It shouldn't be a surprise because it is very common in patients who have had their terminal ileum removed. Can it be treated? Yes - using drugs such as Questran, and they have the added advantage of reducing cholesterol, but some patients struggle with them. Before making the decision I wanted to see my GI consultant.

Tuesday 30th September 2014 - 4:00pm Gastroenterology Appointment at St.Thomas's Hospital

Didn't feel like the last day of September, more like mid-summer. The sun was shining and the walk (3 km) from work down to Westminster was enjoyable and there were fewer tourists to dodge than usual.

St.Thomas' viewed from Hungerford Bridge
Haven't had an appointment this late in the day so will be interesting to see when I get called in. There's the usual false hope of seeing your name appear on the board but only to be weighed. That was at 4:00pm. I asked the nurse who was weighing me to put a note on the front of my file saying that I wanted to see my usual consultant. I was prepared for a long wait and just gone 5:00pm my name appeared again. Off to the consulting room only to be greeted by a new doctor.

I explained that for continuity I had asked to see my usual doctor. He understood and I went back into the waiting area which, by now, had only a few occupants. I prepared for an even longer wait but after just 5 minutes my name appeared again and this time it was for the right consultant. After the initial pleasantries I produced my list and we worked our way through it.
The List
1) Main reason for the visit - decide whether to change medication to deal with the BAM. Some patients struggle with the standard BAM drugs. There is a new one with less side effects but GP's don't like prescribing it as it is an order of magnitude more costly.

"What about the advantage of lowering cholesterol?"
"Good point, do you have high cholesterol?"
"No."
"Well then there's no advantage then."

"How many Loperamide capsules are you taking a day?"
"Two or three."
"That's very low. Some patients are on 20 per day. If you were to change to BAM medication the manufacturers recommend not taking any other medication within 4 hours so you would need to change your tablet regime......."

Conclusion - we'll note that you have BAM but for now let's manage it with the existing Loperamide dosage. That suits me fine.

2) I explained about the pain last Saturday. I can imagine another doctor saying "we'll keep an eye on that..." What I like about my consultant is there's no procrastination."We'll get that checked out" and with that he filled in a request for an ultrasound scan.

3) I had noticed that the opening paragraph of follow-up letters had some errors in dates and the description of the surgery I had undergone. He dictated an update there and then.

4) This was just a note to remind me I needed to book my annual upper GI endoscopy for early November.

5) I had recently been sent a date in January for a routine gastro appointment. I asked if it would be a good idea to get a calprotectin done in time to review the results. He filled out a test request form for taking to pathology with the sample and recalled that my last test results had gone missing until I had done some chasing around. I explained the power of SoMe and finding the "Contact our Chief Executive" page on the labs website. He sounded impressed and we then had a brief discussion on the very supportive IBD communities that have sprung up..

I asked when the next colonoscopy was due as I know there is a recommended frequency for Crohn's sufferers due to the increased risk of bowel cancer. He asked me when my last one was. To my horror I gave him a date, 20th December 2012, and was spot on. I shouldn't keep this information in my head. We agreed that we would review the question at the January appointment, after the Calprotectin results were known.

6) Bloating. I had asked my wife is she had any questions that needed answering. "Yes. Why do you look like you are pregnant?" Ever since my ileostomy in October 2010 I had noticed my upper torso had taken on a different profile. A bloated profile!

He replied that all medical students are taught that bloating could be caused by the five Fs:
  • Fat (obesity)
  • Faeces (constipation)
  • Fetus (pregnancy)
  • Flatus (gastrointestinal wind)
  • Fluid (ascites)
Some we can discount. The most likely causes are wind or fluid. He told me to ask the ultrasound radiographer to also look a little higher than my kidneys to see if there was any fluid showing up.

7) I've been complaining about an ache around my anastomosis (re-join) for some time now. I'd noticed recently that it seemed to be worst with a full gut. He said that would make sense as there could be some distension of scar tissue around the surgery. I pointed out that  he had not seen any scar tissue when carrying out a colonoscopy to which he replied that it would be on the outside of the gut and the only way to see it would be a laparoscopy. Best leave well alone then.

Consultation over.

By now it was getting close to six o'clock. I walked back over Westminster Bridge on the way to Victoria Station. The quality of the setting sunlight on the Houses of Parliament was superb so rather than hurry to catch the train I took my time just marveling at the stone carvings.
The Elizabeth Tower housing Big Ben
The Gothic Revival architecture of the Houses of Parliament
Wednesday 1st October 2014 - I received a phonecall from St.Thomas' asking if I could come in for the ultrasound scan on Friday week. I usually try and avoid London on a Friday but....

There's another post about BAM here - http://www.crohnoid.com/2014/08/bam-sehcat-test.html

    Tuesday, 19 August 2014

    DIARY - BAM & the SeHCAT Test

    If you've read any of my recent posts you'll know I've been complaining about having to rush off to the bathroom rather more frequently than I would expect for someone in "clinical remission" from Crohn's. To combat this problem I have been taking a couple of Loperamide (Imodium) capsules a day and then an extra one if I'm expecting to be "away from civilisation" (ie. a decent loo) for a long period.

    I've mentioned this to my consultant a few times and he did say there is an alternative to Loperamide that might be worth trying - a bile acid sequestrant. I didn't really take it in but at my last appointment in June he said he thought it would be a good idea for me to have a SeHCAT test to see if I had a problem with bile acid malabsorption.  Here's how Wikipedia explains it :

    "SeHCAT is a taurine-conjugated bile acid analog which was synthesized for use as a radiopharmaceutical to investigate in vivo the enterohepatic circulation of bile salts. By incorporating the gamma-emitter Se into the SeHCAT molecule, the retention in the body or the loss of this compound into the faeces could be studied easily using a standard gamma camera, available in most clinical nuclear medicine departments."

    The SeHCAT Test

    As tests go this must be one of the least stressful that there is, unless you have problems swallowing pills that is. The procedure required three visits to the Department of Nuclear Medecine at St.Thomas' Hospital.
    The hottest day in London so far. View from Hungerford Bridge
    Tuesday 29th July 2014 - First visit - It was the hottest day of the year so far in London. I didn't want to catch the Tube so decided to walk from Holborn down to St.Thomas' Hospital (opposite the Houses of Parliament). Having made my way through the throngs of tourists on the Embankment and arrived just before my allotted time, 12:30pm, and after a short wait was taken into a side room. A container was produced and opened. It clearly was some type of radioactive shielding and inside it was a single capsule, the same size as my Loperamide tablets. I was given a glass of water and told to swallow the pill. First part over.

    The salts in the capsule needed time to dissolve and pass into the gut so I was told to return at 3:30pm. I retraced my steps back to Holborn.
    St.Thomas' from Westminster Bridge
    Later on Tuesday 29th July 2014 - Second Visit - Walk from Holborn No.2. I arrived exactly at 3:30pm. Luckily there were slightly smaller crowds of tourists to contend with otherwise I would have been late. As soon as I arrived I was shown to another waiting area whilst the x-ray machine was prepared. After a few minutes I was taken into the scanning room and asked to lay on the sliding table, face up. The radiographer lined up the x-ray head and then I just had to lay there for 5 minutes. I was then asked to roll over onto my front and had another 5 minute scan. When the scan was complete I was told to come back the same time next week for the follow-up.

    That was all there was to it and I was shortly on my way to Victoria station to catch the train home. When I checked the Moves app on my phone that night I had walked 16.8km, an all time record and in that heat.
    X-Ray Machine in Dept. of Nuclear Medecine

    Tuesday 5th August 2014 - Third Visit - Another walk down to St.Thomas'. When I arrived they were waiting for me. As soon as the x-ray machine had been prepared I had the two, five minute scans and the test was complete. A computer then compares the two sets of scans and works out how much of the bile acid is retained in the body. Results would take a week to come through.

    The Results - I left it a week and then emailed my consultant to ask if the results were available. I quickly got a response in which he had pasted the conclusion of the report :

    "SeHCAT Retention at Day 7=1% (Normal study: greater than 15%)
     Impression: Severe Bile acid malabsorption"

    He gave me the option of making an appointment to discuss them with him or he could write to my GP to start some treatment, or could do both. I opted for "both". The appointment has come through for end of September. Given that the malabsorption is described as "severe" I'm surprised I don't feel a lot worse. I've held off doing any research into BAM as I was hoping that the test might prove negative.

    Research - Time to find out a bit more about the subject. I typed "Bile Acid Malabsorption" into Google and started working my way the suggested sites. After scanning through several pages worth of links I came away with three overall impressions :
    1. BAM is often overlooked as a diagnosis of diarrohea
    2. The SeHCAT test is not widely used in the UK and is not even licensed in the US
    3. Of the meds available to treat BAM, two are in powder form and a new tablet form. The powder form is not well tolerated by patients and this leads to a high rate of non-adherence
     The last point was reinforced by a couple of questions of Crohn's forums. The meds are not very nice to take. The tablets are better but more expensive so not so popular with doctors.

    Next Steps - The consultant is going to write to my GP with the findings of the test. I have a follow-up appointment at St.Thomas' organised for the end of September. I don't want to start on any new medication until we've had a discussion that appointment. In the meantime I'll continue to manage the condition with Loperamide as required.

    The big question I will want answered is "given that bile acid sequestrants are not very pleasant to take, am I better of sticking with the Loperamide or are the disbenefits outweighed by the advantages of not having so much bile acid passing into the gut". Watch this space or follow this link "Let's talk BAM amongst other things".

    NICE - One of the documents I came across was a NICE publication entitled "SeHCAT Testing for the investigation of diarrhoea due to bile acid malabsorption". It's not a document about BAM itself but a study into the cost effectiveness of the SeHCAT test as a diagnosis tool. (The link is at the bottom of this page). It sets out the evidence that they considered, including some background information and statistics.

    To save you having to wade through the 30 or so pages these are the sentences that took my eye :

    3.11 - "IBS most commonly presents for the first time between the ages of 20 and 30 years and is twice as common in women as in men. People with IBS are the largest group of patients seen in general gastroenterology clinics (1 in 20 referrals). The prevalence of the condition in the general population is estimated to be between 10% and 20%."

    3.13 - "Crohn’s disease is estimated to affect about 60,000 people in the UK, around 100 per 100,000 population."

    3.14 - "Crohn’s disease is sometimes treated by ileal resection. The prevalence of bile acid malabsorption among people with Crohn’s disease in clinical remission who have had ileal resection is high (97%)"

    5.23 - "For the population with Crohn’s disease, no reports were found that suggested the chronic diarrhoea caused by the condition leads to excess mortality. However, people with Crohn’s disease have a shorter life expectancy compared with the general population."

    6.11 - "The Committee acknowledged that people with chronic diarrhoea are likely to be classified as having a disability and therefore be protected under the Equality Act 2010."

    NICE Document - SeHCAT Testing

    Tuesday, 24 June 2014

    Crohn's Disease - DIARY - The Results Are In

    Guy's Hospital - Monday 23rd June 2014 - Time for another appointment and two things to come away with : some comfort on what is causing the ache around my anastomosis and to agree a long term monitoring plan for the conditions I suffer from. I prepared the list below to take with me.
    The List
    Having arrived in plenty of time I knew there would probably be a long wait ahead as I specifically asked to see my usual consultant rather than a registrar. After a while one of the nurses announced that they were running around 45 minutes behind schedule but it was actually an hour after my allotted time that I heard my name being called. My consultant apologised for the delay. His previous patient had been are particularly difficult case and couldn't be hurried. I had noticed this guy in the waiting area and he did look extremely poorly.

    In the space of around twenty minutes we covered a wide range of subjects and I have tried to capture them, as best I could, for future reference. They may answer some other patient's questions or prompt a few others.

    Into the consulting room - I took out my list and we started. Firstly, what did the calprotectin test from a month ago show? The result was 73, slightly higher than before but on the overall scale of possible results still low. Nothing to be concerned with and no indication that the Crohn's was returning. He explained that a new study had been carried out into the correlation between calprotectin test results and assessments by colonoscopy, specifically looking at the anastomosis and the prediction of Crohn's recurrence. The study has not been published yet and he couldn't find a draft on his PC so he took a piece of paper and drew from memory a graph representing the results. Rutgeert's Score on the X axis; calpro on the Y axis. Apart from a few "rogue" points the calpro results closely agreed with the visually assessed Rutgeert's score. (Rutgeert's is a scoring system used with a colonoscopy in which the consultant assess likelihood of recurrence based on what he sees).
    Blood Test Results
    We then turned to the blood test results. Liver function test - OK, CRP - OK, Hb = 135 but platelets = 59, the lowest ever. He asked me if Haematology were particularly concerned about this low count to which I replied "No". So we parked that one. (Will mention it to my haematologist when I see her later in the year but she has told me not to get hung up on numbers, it's symptoms that you should look out for).

    He then said "Sorry, we've been so busy focused on your results I haven't actually asked you how you are feeling!" That triggered a discussion on the ache I have been getting around my anastomosis. At the previous appointment he thought it was purely a mechanical issue and not the signs of Crohn's restarting. The recent test results bore that out. I explained that it wasn't so much the mild ache that was causing me concern but the implications that it could be the precursor of something more serious. It's not there all the time and seems to be worse after driving a long distance, wearing a tight belt or having a full gut. He decided to give me a quick physical examination noting that hands are not a particularly sensitive diagnosis tool! He couldn't feel anything that caused concern. It was most likely adhesions which are a consequence of the surgery. "And the implications of adhesions?" None. (I know that others may have had a different experience)

    I mentioned that on a couple of occasions recently I had had to rush off to the bathroom when travelling and luckily had made it OK, but only just. My digestive system was very variable, ranging from normal to urgent. Back in December he had made a cooment that, because of the surgery I had undergone, my digestive system would probably never return to normal. I queried how the removal of just 14cm of bowel would affect it so much. He agreed but it wasn't what I was missing that had prompted his remark, more the effect of a surgeon having been in and rearranged my guts. (Thinking about it subsequently, the operation in October 2010 was not simply to remove a stricture but to sort out internal fistulas and loops that had formed. The operation took four and a half hours and the surgeon described it as "one of the most complicated and enjoyable" that he had carried out). The way his phrased it will always amuse me).

    Urgency seems to be worse on work days when I know I needed to get to the station by a certain time or I won't get parked and will then miss my train. I wondered if this was a form of stress that was making it worse. He replied that stress was widely known to affect the digestive system so it was very likely a contributory factor. We then discussed the psychological aspects of Crohn's which can have a very marked effect on patients' lives. He had some patients who were now afraid to go on the Tube, for instance, as they had had a bad experience and were not prepared to risk it again. I mentioned that I seem to have been building up a reaction to phone calls. Within ten minutes of starting to talk to a friend on the phone I am often desperate to go to the bathroom and it seems to have become self-fulfilling. Must try and break myself of this. There is no logical explanation for it.

    There is a theory that the ileocecal valve plays a part in slowing down the digestive system and acts as a break point but in his opinion this was groundless. (BTW - I lost my valve along with the stricture). However, it would be worth having a bile acid malabsorption test carried out as this can affect the speed at which matter passes through the gut. The test would involve swallowing a radio active marker, then having an x-ray. A week later a second x-ray would be taken and the two results compared to assess how much marker was left, or had been re-absorbed. Another new experience, something to learn from. He filled in the request form and hit the send button.

    This is what Wikipedia says about the test :

    "Diagnosis of bile acid malabsorption is easily and reliably made by the SeHCAT test. This nuclear medecine test involves two scans a week apart and so measures multiple cycles of bile acid excretion and reabsorption. There is limited radiation exposure (0.3mSv). Retention of SeHCAT at 7 days is normally above 15%; values less than 15%, 10% and 5% predict respectively mild, moderate and severe abnormal retention and an increasing likelihood of response to bile acid sequestrants. This test is not licensed in the USA, and is underutilized even where it is available."

    Ongoing Monitoring - I had read that Crohn's disease gives an increased risk of bowel cancer and wondered whether this was an argument for having colonoscopies rather than calpro tests. His explained that the increased risk was due to inflammation. My last two colonoscopies, and now the calpro tests, showed that I was clear of inflammation.

    We then moved on to PSC (Primary Sclerosing Cholangitis) for which I have a yearly upper GI endoscopy, looking for and treating esophageal varices. I had seen on the PSC support website that many sufferers had a colonoscopy as one of their monitoring measures. I wondered what it was intended to show. He said that PSC does give an increased risk of cancer so suggested that we review the colonoscopy question at the next appointment in six months time. It would then be two years since my last scope and it might therefore be worth scoping again.

    I didn't ask the question about harmonising blood tests. That's something I can manage myself.

    Parting Shot - I couldn't resist asking a final question prompted by last week's "media does Crohn's and gets it wrong - again" story. "Was my Crohn's disease caused by eating junk food?" I won't use his exact reply but the gist of it was that this foundless claim had caused much damage and upset amongst both patients and gastroenterologists ie. the general IBD community. He was attending a gathering of GI specialists when the story broke. They had then been inundated with requests from the media to do interviews...but "Junk food causes Crohn's" is a much more arresting headline than printing the truth.

    ...... and as for the 300% increase in hospital admissions for young people with Crohn's. Whilst there is undoubtedly an increase in the number of cases being diagnosed it is not the reason for the 300% figure. That can be explained by the use of modern drugs that require infusions, such as Remicade, or treatments such as iron infusions that each count as a hospital admission. His frustration was very apparent.

    And that was it - my next planned appointment should be in the lead up to Christmas. In the meantime he asked me to contact his secretary once I had had the bile acid malabsorption test to get the results. I will admit to coming away from Guys with a slight spring in my step if for no other reason that it is so good to find a consultant that considers all the aspects of your disease and is willing to take the time to discuss them with you. It was worth the one hour wait. I was also reassured by his comment regarding cancer risk and inflammation, and of course the fact that, at present, the Crohn's seems to be held at bay. I just have to accept the ache in my side is not an indication of something more serious and I can get on with life with added vigour.