Category Archives: crohn’s

Ignorance is Bliss

(Updated to mark the 41st anniversary of my diagnosis)

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 reach 41 years of of being diagnosed 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.

This was doctor’s note from my first admission to hospital (Mayday, Croydon). They didn’t know how to spell Crohn’s in those days
July 1978 – Mayday Hospital. The sister took pity on me and put me in a single room

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.

Viva la Vedo

Monday 15th April 2019 – Guy’s Hospital – Gastroenterology

The Vedolizumab Decision

(This post records an important discussion prior to the next stage of my Crohn’s treatment)

The gastro clinic at GSTT is a victim of its own success. Once a patient gets referred there they invariably don’t want to return to their original hospital. As a result clinics run late. I guess they must be overbooked to cope with the numbers. But forewarned is forearmed so I always take something to read. Having registered with reception I settled down with my book. A nurse appeared and apologised that the doctors were running 75 minutes late. I wondered if there would be time to go and get a chest x-ray (booked some while ago). It was worth a try. Ten minutes later I was back in the outpatients’ waiting area with the x-ray complete. Excellent service.

When you get called into the “inner” waiting room you know it won’t be too long until you see the consultant. I asked the nurse to put a note on my folder that I wished to see my usual doctor. After a few minutes he was calling my name. As I entered the consulting room I had a list of questions in my hand as an aide-memoire.

Capsule Endoscopy Report

He asked if I had received a copy of the capsule endoscopy report. Yes, but didn’t know what I was looking at. He worked his way through the document stopping at any frames of interest – “that looks like an ulcer, and there, and that’s one…..” – the conclusion was mild to moderate inflammation in my small bowel. I asked whether it was possible to work out location of inflammation as I get a pain across my midriff,  just above my belly button. He did not expect that to be where pain would be apparent. I mentioned it seemed worse when wearing a tight belt and explained about the hernia that had been found a couple of weeks previously and how it hurt more since surgeon had “poked around”. Normally a hernia would be put right in a simple operation but due to varices growing in my abdomen the surgeon was not happy to proceed. I had added it to my “on-hold” list – cholecystectomy; hernia repair.

Next he ran down the results of my recent blood test. “You’ve had chickenpox but not glandular fever as no antibodies are present, oh and you haven’t got AIDS but you probably knew that”. I replied that I had a very bad bout of glandular fever at the beginning of my ‘A’ levels, which accounted for why I did so badly. Maybe antibodies disappear over time. I was pleased to see that my Hb had now risen to 11.8. There was another test, looking at protein bands, one of which was marked “insufficient sample provided” which I thought strange as the phlebotomist had taken nine, full to the top, phials last time. I would need need to give a further sample after the appointment.

I outlined my reticence about starting Vedo :

  • Having been Crohn’s drug free for nearly 8 years I was hesitant to re-start
  • Side effects
  • Co-morbidities
  • Infusions. Whilst I like trips to London (at the moment) I might not do so as I get even older

What could happen if I decided not to start Crohn’s drugs? The worst outcome would be the inflammation becoming so advanced that the bowel could perforate or form fistulas and result in emergency surgery. Given that I should try to avoid surgery this sounded like a risk not worth taking.

The side effect profile of Vedo is very good and it is proving very successful. A recent study into its use with Ulcerative Colitis showed better results than expected. I said that I had seen some slides from that presentation as a member of the audience had posted them on Twitter. He seemed a little surprised at this but added “I do talk a lot!

Is Vedo compatible with my co-morbidities – bile acid malabsorption; portal hypertension; thrombocytopenia; gallbladder issues? I do have rather a lot of them. He told me not to be concerned about them and that I must be made of stern stuff as there were many patients at my age who were in a considerably worse state!

With regards to travelling for infusions, a self administered version of Vedo, using compressed air rather than a needle, has been developed and will undergo 2 years of trials. It should be available in 3 years time then no more infusions.

I asked in light of the calprotectin tests, suggesting the inflammation started early in 2016,  if I should have had a capsule endoscopy sooner than October 2018 ”  His response was that the first place to look following raised calprotectin results is lthe arge bowel. My colonoscopies showed nothing. The subsequent small bowel MRI also showed no inflammation. However given my experience he was now favouring earlier intervention with a capsule for other patients.

How would we measure the efficacy of the drug? Regular calprotectin tests throughout the year and at the end of the first twelve months a capsule endoscopy and small bowel MRI. The one thing I didn’t clarify is whether Vedo is taken to get one into remission and then continues as a maintenance dose or if another drug is then substituted.

I said that I wanted to discuss the situation with my wife before making a final decision but was leaving the consultation with a lot more positive thoughts about Vedo than when we started. How would I give the go ahead? “Contact the IBD Helpline and take it form there“. With that we shook hands,  I bade him farewell and headed for the blood test room.

Having weighed up the pros and the cons, and with the additional imperative of avoiding surgery (if at all possible) it would seem to be a no-brainer that I should at least try Vedo to get me back into remission before serious damage is done to my gut.

Now where’s that IBD Helpline number……

 

Pendulum

When I was younger, so much younger than today I never….

….wanted to go anywhere near a hospital. It was my biggest fear. Some of my schoolmates had already been incarcerated to have tonsils or an appendix removed. I don’t know what scared me specifically. Was it the thought of surgery? Was it an enforced stay away from the comforts of home and family? Was it thoughts of my own mortality? My fears turned into reality, in my early twenties, when I found myself in an ambulance, sirens blaring, heading for Croydon General Hospital with suspected appendicitis.

As it turned out it was more sinister than that – a perforated bowel that had leaked into my abdominal cavity and peritonitis had set in. (More of this later) When I left hospital after 3 weeks, most of which were spent on a “liquids only” regime, I had not suffered any particularly traumatic experiences but it had not lessened my fears.

I had been told that this first Crohn’s surgery was unlikely to be the last. In the ensuing years I still considered the knife to be the “last resort”(and, to be fair, so did my consultants). It was the “backstop” (to use a popular word) once all viable medication had been exhausted. In 2010 I was faced with surgery again having tried all the possible drug treatments. Thirty years between operations? Not bad. Three times longer than anticipated. Following the successful removal of a terminal ileum stricture, temporary ileostomy and subsequent reversal, I revisited my thoughts. If I had chosen elective surgery years earlier would my QOL have been better, sooner? The pendulum had now swung the other way and I started to advocate that surgery should not be considered a “last resort” or an indication that all other treatment had failed. It should be seen as an alternative to drug based treatment. It’s an area which various learned bodies are researching.

Then in January 2017 I turned yellow (jaundice). I was sent to see an upper GI surgeon (at my local hospital) who explained that the solution would be to remove my gallbladder. A relatively simple procedure, carried out laparoscopically. When he examined me he happened to notice the large, laparotomy scar stretching up my midline. He asked me to go through my medical history. At the end of my story, which included Crohn’s, portal vein thrombosis (probably due to the peritonitis), enlarged spleen and varices, he concluded I should be referred to a specialist liver unit as the operation would require specialist facilities.

A few weeks later I went to see another upper GI surgeon, this time at Kings. His registrar had started to go through the standard, pre-surgery checklist when I produced a drawing showing the route that my health had taken so far. She metaphorically gulped and went off to find the lead surgeon. He expressed his concern about carrying out surgery and after a lengthy discussion we concluded it would be best to leave well alone and only operate if it became absolutely necessary.

At my request I saw him again a couple of weeks ago as I had noticed a pain in my right hand side and wondered if it was a portent for needing his expertise with a scalpel. He prodded and poked the offending spot and announced that I had a post-operative hernia at the site of my former stoma. Again this would usually be a simple day operation but given my history it was another one to add to the “do nothing unless absolutely necessary” list. It dawned on me that the pendulum had now swung back to its original position. Due to circumstances, in my case, surgery really should be considered as a last resort.

In the meantime the long running “why is my calprotectin so high” question had been resolved. A capsule endoscopy in November 2018 showed that inflammation in my small bowel has returned. I have a meeting with my gastroenterologist next Monday to discuss starting Vedolizumab. I was minded to suggest holding off for the time being but that may not be a sensible position to take as I really do need to avoid surgery for as long as possible. Should be an interesting discussion.

Call My Bluff

It started with a routine calprotectin test in November 2015. The result came back at just over 100, which equates to “mildly elevated”. Subsequent tests continued the upward trend. A graph (I do love a good graph) is the best way to show the issue.
Calprotectin Test Values

To try and explain this ever rising trend I underwent a number of MRIs and colonoscopies but nothing untoward was seen and my gastros were stumped. Life continued as usual and my remission appeared to be continuing despite the confusing calpro figures. Could there have been something causing a false positive reading? I set about trying to find a plausible answer (that didn’t involve inflammation) but without success. In the meantime I was wondering why my Hb level was on the low side. Cue another graph…

Hb Values

It wasn’t until late 2018 that I went to see my gastro again, ostensibly to discuss the Hb level and a recent bout of “bathroom dashes”. Was it time to re-investigate the calprotectin issue. There was one section of my gut that hadn’t been seen by camera, namely the small bowel between duodenum and the anastomosis site (where my terminal ileum had been). I was booked in for a capsule endoscopy on 18th November. The full description of the procedure and the wait for the results can be found here (opens in a new window) – http://www.wrestlingtheoctopus.com/fantastic-voyage/ .

When the report was finally available my consultant emailed me to say that “there is some inflammation in the small bowel – it’s not terrible but it must be the source of the calprotectin. I  think it is probably enough to warrant treatment which we should discuss. Shall I arrange an appointment?” Yes, that would be a good idea. The date has come through for mid-April. A few more weeks wait before finding out the way ahead….

Then, last Thursday, I was rather surprised to get a phonecall from one of the IBD nurses. She told me that it had been decided, at the weekly virtual clinic (which I think must be like an MDT), to start me on Vedolizumab and they needed to book me in for a blood test and chest x-ray prior to my first infusion. I explained that this would be a major decision, as I had been Crohn’s drugs free for several years. My preferred option was to stay that way. I would want to discuss any new drug/treatment, at the forthcoming gastro appointment, prior to starting. (I have subsequently had an email from my consultant agreeing with this course of action. It appears that the IBD nurses had been very efficient in trying to arrange approval for the drug prior to the appointment)

Bluff

I’m now in a position that many other patients are confronted with – the end of remission. I’ve written many times about maintaining a laid back, positive attitude. Now my bluff is being called and I need to prove to myself that I can continue being calm and unstressed about my health.  So far so good. If my quality of life was being seriously compromised and I was unable to function properly then the decision to restart medication would be a simple one…..but it isn’t apart from…..

….an ache in my right hand side (URQ). It’s more annoying than being anywhere near painkiller territory. What could be causing it? As with most things #IBD related there is always a high degree of uncertainty. I consider this to be one of the major psychological burdens we bear.

I’m currently testing an IBD Self Help programme. It is broken down into modules which are completed over a number of weeks. I haven’t reached the “Pain” section yet so I’ve been relying on the old technique of visulaising the pain in an attempt to lessen its impact. That’s easier to do if you know there is only one cause but in my case it could be : the recurrence of the old ache around my anastomosis due to adhesions/scar tissue; gallstones; getting the balance of Loperamide/Colesevelam wrong; or the new kid on the block – inflammation. (“New” may be an incorrect description given that the first high calprotectin values showed up in May 2016).

Jump

You might think that I would jump at the chance of starting treatment but I’m not so sure. If inflammation did restart in 2016 then I have thrived so far without medication, do I really need to start now? I don’t want to be dogmatic and take a “I’ve been taking no drugs so I’m not going to start now” stance without good reason. A fellow Crohn’s patient asked what made me hesitant? I suppose the answer is “side effects”. I have not needed to educate myself on the progress of the MABs/biosimilars and their potential downsides. I have a lot of catching up to do and need to understand how the benefits would outweigh the risks.

I have however had experience of drugs damaging other systems or not working. I took Azathioprine for 9 years, with no apparent side effects, then my platelet count suddenly plunged. The concensus was that the Aza had attacked and permanently damaged my bone marrow which in turn reduced its ability to produce platelets. No more Azathioprine. I then tried Infliximab but after 3 doses my symptoms showed no improvement and I went under the surgeon’s knife (2010).

Platelet Count

Before the mid-April appointment I need to research Vedolizumab; ask other Crohn’s patients for their experiences and come up with a list of questions for my gastro. I’ve made a start……

Questions, questions….

I would usually leave my list until a couple of days beforehand. Given that this will be a major decision point in my Crohn’s experience I thought it best to start writing now.

  • What exactly did the capsule endoscopy show in the way of severity of inflammation and locations? Was it confined to the small bowel?
  • What was the gist of the discussion that resulted in proposing Vedo?
  • My QOL is good apart from an ache on my right side
  • Looking at the calprotectin levels it suggests that inflammation started somewhere between November 2015 to June 2016 but was not apparent on other tests
  • It has been 6 months between having the capsule endoscopy mid-November and the appointment. That suggests it does not need immediate treatment.
  • What if I decide not to go back onto Crohn’s medication at present?
  • How will Vedo help me now? …and in the long term?
  • Are there any side effects I need to know about? Are any of these relevant to my other conditions?
  • Ongoing monitoring regime? Frequency?
  • How good a measure would calprotectin be for small bowel Crohn’s?
  • Does the efficacy of Vedo differ as one gets older? Do the side effects change?
  • Is there the opportunity to have infusions at a local hospital?
  • Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
  • What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?

(If I have missed something obvious or you have beem in a similar situation then please leave a comment or respond on Twitter @crohnoid – Thanks)

…and another thing

A chance to combine the World Cup, gardening, Crohn’s Disease and colorectal surgery all in one post or maybe just a chance to do some navel gazing.

With the World Cup upon us once more my memory has been drifting back to when it was held in South Africa eight years ago and the situation I found myself in at the time.. A couple of posts ago I wrote about things I don’t/didn’t know about IBD and my unsated curiosity.  Here’s some other things that I’m curious about, bear with me.

In 2010 I knew I was heading for surgery. The pain in my abdomen/back was stopping me from getting a good night’s sleep. In May my consultant told me to expect  to go under the knife within 4 weeks at our local hospital. Preparations to get my life in order went into overdrive only to come to an abrupt halt when my wife and I were invited to attend an impromtu MDM with my consultant, his boss and their colorectal surgeon. The upshot was that the operation, or more specifically the recovery, was too complex for them to contemplate. They were referring me to St.Thomas’ in Westminster. You can imagine it was a bit of a bombshell.

A meeting with the surgeon at St.Thomas’ resulted in the date for the operation being set for the second week in October. (It couldn’t be September as he always went on holiday for the month!)

Strangely I started to feel a lot better and the pain improved greatly. I decided that one of the projects that had been on hold could go ahead – the construction of a pergola. It may not  sound very exciting  but it was quite a challenging piece of work, especially for someone about to undergo surgery.

Having designed the structure, ordered and collected the timber I spent many happy days and evenings digging the holes, cutting the joints and assembling the structure. It helped take my mind off the forthcoming operation. Although it was physical work it was also relaxing and, of course, tiring. Getting to sleep was not a problem.

A few days after starting….

The finished job

My constant companion throughout that period was the World Cup on the radio so when I heard the opening match between Russia and Saudi Arabia today (14th June) I was  immediately transported back to that hot summer, balmy evenings and re-ignited the questions…

In 2010 my guts were in a pretty bad way  – there were loops, fistulas and, probably most worryingly, my intestines had started to attach themselves to my back muscles (hence the back pain) and to vital organs.

One of the surgeons very kindly drew this diagram for me

The questions : If I was in such a bad way how did I manage to complete a physically demanding project. How much longer could I have continued without the “elective” surgery becoming “emergency” surgery. It was five months from when I had expected to have surgery to actually entering the operating theatre. It seems like a long time to wait.

I know I will never get an answer to my musings but once again curiosity is getting the better of me. I’ll just keep them on my lengthening list of “nice to knows“. Tune in next week for some more navel gazing (I’d like to commend the skill of the surgical team for still having a navel to gaze at.)

 

The Difficult Patient

I like to think that I’m a good patient. I very rarely forget to take my medication; I always turn up for appointments; I try to enter the consulting room with a positive attitude and clutching a list of questions.

…but I’m also a difficult patient. I think it’s true of any IBD patient that we are “difficult” because it is likely that on first presentation to our GP our symptoms could have a number of possible explanations. At least more doctors are becoming aware of IBD as an avenue for investigation. It took 8 months for my positive diagnosis of Crohn’s disease, via “nerves” and “spastic colon” along the way.

The difficulty continued. My platelet count dropped dramatically (thrombocytopenia). The most likely explanation? “It was the azathioprine.” So I stopped the azathioprine, my platelets showed no improvement and I ended up having surgery to remove a stricture.

Azathioprine is known to potentially affect the blood which is why we should have regular blood tests when taking it. Although my platelet count was around the 70 mark (usual range 150 – 400), I was asymptomatic. If I cut myself I didn’t bleed any more than usual and after several visits to see the haematologist it was decided to park the issue as it wasn’t affecting any other treatment. I had been in remission and Crohn’s drug free since surgery.

But what if the Crohn’s started to flare again and my gastro consultant decided the best treatment would be to restart the Aza? I put this to him and he agreed that we should un-park the question and try to find out whether the drug was to blame.

Off to see the haematologist again and two bone marrow biopsies later it was decided that Aza was the probably the guilty party, had attacked my bone marrow which in turn suppressed platelet production. (…..not everyone agrees)

The second “difficulty” was when I started vomiting blood, an incident that I have mentioned many times before. Into our local A&E and then admitted as an in-patient. The consultants there were expecting to find an ulcer. To confirm their suspicions they shoved a camera down my throat and were surprised to find esophageal varices. A simple-to-treat ulcer was actually something a lot more sinister.

One ultrasound scan later and it was identified as portal vein thrombosis. Time to pass me back into the care of my usual hospital. Treatment would involve both a hepatologist and haematologist. At my first meeting with the hepatologist I asked what could have caused the blood clot in my portal vein. He said that the most likely explanation was that it resulted from peritonitis brought on by a perforated bowel over 30 years previously. I have to admit I still struggle with this explanation. Why did it take 30 years to come to a head? Result – beta blockers and proton pump inhibitors.

The haematologist suggested that I started taking blood thinners to combat the threat of further blood clots. I really didn’t want to take any more medication than strictly necessary so we did a risk analysis and concluded that it was 50/50 for and against. Result – no warfarin. Another issue successfully parked.

Then came the jaundice as a result of gallstones. I met with upper GI surgeons at both my local and Kings College hospitals. The usual treatment would be to whip out my gallbladder using keyhole surgery but, of course, my case is not so simple. Previous laparotomies have left scar tissue and adhesions that would preclude a keyhole operation. Then an MRCP scan showed that the varices, that had grown down my throat, had also grown around my gallbladder.  Aaah!

What have we concluded? The choices are to operate now to prevent a problem in the future “that might never happen” or to postpone the decision and review again in 6 months time. He was minded to go with this second option. I wholeheartedly agreed with him.

…and finally there’s the little matter of conflicting test results. As it was the subject of my last post I don’t intend to repeat it here but it leaves me with questions. Is the “wait and watch, let’s park that issue” a valid strategy or best option in this instance. If I asked for further investigations to be done would I simply be using up valuable NHS resources carrying out tests that might make no difference to, or even worsen, my QOL? Would it even be clear which further tests could be carried out? As I said in that previous post, curiosity is getting the better of me but I’m not going to lose any sleep over it. That’s one of the advantages of writing a blog. You can get all your thoughts down in one place and then, you guessed it, park them.

Maybe there are no clear cut answers but I’m starting to feel that my “difficult patient” status can only get worse as the ageing process kicks in. Oh for a simple life.

Christmas Treat

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

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

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

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

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

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

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

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

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

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

Next update after the meeting with the surgeon.

Elective or Emergency?

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

Why?

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

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

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

Preparing to meet the surgeon for the first time

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

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

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

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

What Shall We Talk About?

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

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

Risks and Benefits of Surgery

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

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

Likelihood of liver damage?

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

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

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

My Preferred Way Forward

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

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

Anything Else?

Next upper GI endoscopy/variceal banding due December 2017

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

…..should be an interesting meeting

The Aza Conundrum

For nine years between (1999 to 2008), taking Azathioprine (Imuran) in varying doses between 150mg to 200mg/day successfully kept surgery at bay. Any Crohn’s flare-ups were dealt with by short courses of steroids. Then a series of routine blood tests showed that my platelets were dropping and it was concluded that Azathioprine was the most likely cause. I stopped taking it and within 2 years was undergoing major surgery.
I drew a graph to try and spot any correalation between the drug dose and the platelet count. I was expecting to see the count bounce back once I stopped taking Azathioprine and it did so the first time but when I started/stopped for the second time the platelets remained low. I’m guessing at that point the bone marrow was already damages. The only way to investigate further was to have a bone marrow biopsy.


In 2012 I went to see a haematologist and she explained some possible causes of a low platelet count :

increased destruction – the body is producing sufficient but something is destroying a number of them, possibly drug induced

decreased production – the body isn’t producing the right number in the first place which could be down to bone marrow failure.

We also discussed another factor – the implication of my enlarged spleen. Enlarged spleens can hold increased numbers of platelets and therefore the number released into the bloodstream is lower hence the lower count.

I had the bone marrow biopsy and afterwards received an email saying: “your bone marrow is being discussed with the histopathologist and we will write to you with the results. We will see you in clinic later in the year.” (I had to look up histopathologist – someone who carries out microscopic examination of tissue in order to study the manifestations of disease.)

I replied asking for an indication of what they had found. The response was that it would be easier to discuss the findings in clinic.
What did that mean? Nothing to worry about, it can wait, or it’s serious and we want to tell you face to face? Time for another short email along the lines “…I wonder if you could at least put my mind at rest that you haven’t found anything too serious….”

Within a few minutes this came back :
“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. We can discuss this in person and in more detail at your next appointment. In the meantime – I hope this reassures you.”

The appointment duly arrived. The haematologist started our conversation with: “Yours is not a simple case…..”. She had printed out the biopsy report that had been discussed at their MDM 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 internet and would have spotted the potential links with leukemia. That’s why the report hadn’t been emailed to me. [If I had Googled MDS I would have found the following – “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 was right to want to discuss it in person.]

She was not completely happy with this MDS conclusion because a bone marrow biopsy looks at two substances – the marrow itself and the aspirate (fluid). When the procedure was carried out the doctor was unable to obtain good aspirate slides as the blood in the samples kept clotting. After several attempts, but with little success, they had decided to concentrate on obtaining a good bone marrow core.

She described it as “like having a three piece jigsaw from which two of the pieces are missing.” 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 you feel about this?” I replied that I really wasn’t fussed. If it would help narrow down the diagnosis then the sooner the better. Next time they would use heparin, a blood thinner, with the sample needle as it 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 had been unaware that there was a potential link between Crohn’s and bone marrow.

The MDM 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 required 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 and a three-month follow-up appointment.

In the meantime I had a routine gastroenterology appointment and I mentioned the need for a second bone marrow biopsy. Now you would think that a doctor who doesn’t bat an eyelid when sticking a camera up a patient would be pretty much hardened to all medical procedures, but the mere mention of the bone marrow biopsy was enough to make him squirm. He asked me if I was OK having the biopsy as it was the one test he really wouldn’t want to undergo himself! Strangely enough he wasn’t the first person to express that emotion.

A couple of weeks after the second biopsy I was back to see Haematology. When I went in for the pre-appointment blood test the phlebotomist asked me if I knew why she was also taking an “histological” sample. Since I didn’t know what “histological” meant I was of little help. (Of course I know now! It’s the anatomical study of the microscopic structure of animal and plant tissues).

The haematologist explained that one of the biopsy samples, which should have gone for histological testing, had either been mislaid or mislabelled so did not make it. This is why she had rung me a few weeks back to explain the situation. I’d forgotten about this. She had, however, looked at the other slides from that second biopsy and these were fine.

The missing sample had been discussed with the chief histologist and he suggested doing a specific 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 to put me through that again. I suppose I could have made a fuss about the missing slide but I couldn’t see what good it would do.

CURRENT SITUATION
When I saw the haematologist in February 2015 she described my bone marrow as being “a four cylinder engine running on only three” and therefore not delivering the right quantities of platelets.
What is the long-term prognosis for the thrombocytopenia? It should not affect the other issues I have – Crohn’s, potential PSC, PVT, but I must avoid the use of azathioprine in the future. It’s important not to get hung up on the numbers as I am asymptomatic and do not bleed profusely if I cut myself.

What could have caused the low platelets? There are no signs of marrow abnormalities that could point to a more sinister conclusion (leukaemia), therefore the cause is most likely to be drug-induced long-term use of azathioprine. The official description was “asympomatic thrombocytopenia. Therapy related secondary dysplasia on bone marrow morphology – most likely due to Azathioprine”.

Do I need treatment? No, but must look out for any signs of starting to bleed more easily. Monitoring? Six-monthly blood tests and outpatient appointments (which subsequently became annual and then dischargeded).

WHAT NEXT?
A couple of new issues have arisen – borderline thyroid level + possibility of cholecystectomy – so it seemed like a good idea to book another appointment with Haematology to discuss further. Watch this space

Medical Records

A subject I’ve written about before but always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

Ideal World vs. Reality

In an ideal world each of us would have our full medical record available in a universally readable format that could be easily accessed by any medical professional that is treating us.

Now let’s look at the real world. If you are a relatively new patient who hasn’t moved hospital and not had an in-patient stay then you may indeed have a complete record, held electronically, on an IT system. If, however, you are a long term patient who has moved between GPs and hospitals and spent time as an in-patient then the situation is far more complicated. You are likely to have a mixture of hand written notes and observations, type written letters and, more recently, computer generated letters and test results. There are also x-rays and scans to consider.

The above does not address the issue of universal access. The last attempt in the UK to implement a system was NpFIT (The National Programme for IT in the NHS), a project initiated by the Labour government in 2002 and cancelled some years later having spent in the region of £12bn and having delivered very little. Government backed IT projects are notorious for being disaster areas.

Patient Rights

Where does that leave the patient?

In the UK you have a right to access your medical records. Since 2000 onwards I have received copies of the follow-up letters from outpatient appointments  that the consultant sends to my GP. This may be sufficient for your needs but I needed to fill in a lot of missing detail for the book I was writing. For the payment of a fee you can obtain copies of all your medical records . Requests forms are available online for each Healthcare Trust and as I had been treated by 3 different Trusts I filled in 3 different forms and sent them off with the relevant payments (between £20 and £50 depending upon whether you just require medical notes or want copies of x-rays and scans as well).

A series of packets duly arrived and I was amazed to find they really  did contain ALL my medical notes from October 1977 to the present. Two Trusts chose to send hard copies whilst the third had scanned the notes to a pdf file of over 700 pages. I also had loadable files for CT, MRI and US scans. The only things missing were certain early x-rays.

Information Overload?

My initial reaction was “information overload” but over the space of a few nights I sorted the documents by type and date order and picked out the “juicy bits”. Those bits that explained some long, unanswered questions about my treatment. Probably the most fascinating were the ward notes from the times I spent in hospital. These are not usually documents that you get to read.
The discs containing CT and MRI scans looked a bigger challenge but I found a great piece of software called Horos which opens and views the files.. Hours of fun looking at 3D visualisations of your innards.

What use are they?

What can you do with, potentially, a huge amount of very detailed medical notes? Whilst they might be of academic interest to the patient and provide a fascinating insight into how you arrived at your current state they are not a lot of use to your medical professionals due to the sheer bulk of the information. This is especially true if you are seeing a new consultant who needs a succinct overview of your medical history and current issues or if you end up in A&E (ER) where they need to start treatment as soon as possible.

It gets considerably more complex if you are suffering from multiple conditions. Initially I put together all the major events into a spreadsheet table. Going through the process certainly gave me a good grasp of my overall health and I have ended up a much better informed patient. This helps greatly when you need to take decisions about the course of future treatment. It helps clarify the most important issues.

If you still find it difficult to work out how your health threads come together then draw a diagram. I’ve tried a number of different format. Here’s my chosen format :

Future Developments

There are more references appearing where patients are recording their consultant appointments or having consultations via Skype. Would these audio and video files need to be kept as part of your medical record? Do medical professionals expect to have access to any recordings you make?

Watch this space…..