It’s time to try and tie up the loose ends so that I can start 2018 with a clean slate. Where to begin?
Bile Acid Malabsorption – my pet subject. A much under-discussed issue that affects those of us who have had their terminal ileum removed. Having resisted starting yet another drug I finally decided to give in and try Cholestagel (Colesevelam) to give added control of the condition. Loperamide, on its own, seemed to be struggling. Apart from the odd set back the new tablets are working well and have topped up my confidence level. I’m only taking one with breakfast and one with dinner and matching that dose with Loperamide.
Calprotectin Testing – I was in two minds whether to even bother with another test as the last few results have been very high even though I’ve been feeling fine. My consultant said that I might as well be tested so I dropped a sample into the path lab with supporting paperwork. Two weeks later I contacted him to see if the result was back. He checked my record and all it said was “sample unsuitable”. What did that mean? I contacted the path lab and eventually was told that my sample was “unsuitable” because I hadn’t put my first name on the phial! Really? I am always very careful about putting ALL the relevant information of the label and that includes full name, Hospital No. & DOB. This was their reply :
“The following is the outcome of our investigation, our Central Specimen Reception (CSR) team only process samples following the Sample Acceptance Policy. Section 5.1 that states “The following minimum data set must be given for ALL laboratories: The mandatory three unique identifiers are: First Name, Family Name (Surname), Date of birth.”, and “Samples that fail to meet the mandatory criteria represent a significant risk to patient safety and raise serious concerns of sample integrity”.
They also stated that due to the “limitations of the IT system” it was only possible to mark a sample as “unsuitable”, not provide an explanation as to the reason. What I fail to understand is – if they didn’t know who I was then how come they knew it was my sample that was “unsuitable”. I would have thought that the combination of surname, DOB and unique Hospital No. should be sufficient for the testing to proceed. Normally I would take this further but, quite frankly, I don’t think they are worth wasting my time on. In the meantime I have provided another sample and handed it in to the IBD Nurses. I wonder whether that will be tested without issues.
MRI Pancreas Report – I had requested a copy of the last MRI report (October) but was starting to wonder if it had been such a good idea. Phrases such as “there is evidence of progressive portal hypertension with splenomegaly and upper abdominal varices” do not make for good reading to the untutored eye. Something to quiz the doctor about before the endoscopy.
Upper GI Endoscopy – 19th December 2017 – St.Thomas’ –
“Stick a camera down the oesophagus to see what’s occurring” day had arrived. The appointment was at 13:00 so plenty of time beforehand to visit a gallery (Dali/Duchamp at the Royal Academy) and do some Christmas window shopping (Fortnum & Mason).
I arrived at the hospital early and took a seat in the Endoscopy waiting area, watching the boats passing up and down the River Thames. After a while a nurse appeared and explained that they were currently running about 15 minutes late but had four rooms in operation. Each was doing a different type of procedure, some of which were a lot quicker than others. This was the reason some patients appeared to be jumping the queue. If only other clinics would adopt the same “keep the patient informed” approach. He then called my name to do the necessary safety questionnaire and give me a hospital gown to don.
I put it on over my clothes and sat in the inner waiting room. Another nurse appeared and explained that the Head of Department wanted to carry out my procedure (ominous) and they were waiting for him to arrive. After a while a registrar appeared and took me into a side room to run through the procedure, the risks involved and to get me to sign the consent form. We then discussed my current health conditions and I gave her a copy of the MRIP report. I thought it was highly likely I would need variceal banding. She responded “Oh good, I enjoy banding” . I pointed out that I’d rather not need any as I didn’t want the 4 days of “sloppy” food that would neccessarily follow.
We discussed my ever enlarging spleen and I asked her what we could do to stop me becoming one large spleen on legs. She proposed upping my beta blockers (Propranolol) to the next level . I commented that given these other medical conditions, Crohn’s was the least of my worries. She concurred and with that we went into the theatre where the team, and the “top man”, were waiting.
Usually just the thought of the xylocaine (throat numbing spray ) makes me gag but this time I was fine. I didn’t even worry about the mouthpiece that guides the endoscope. A shot of fentanyl and the next thing I knew was waking up in Recovery being told by the nurse that I didn’t need banding. Result!
..but there is still one large loose end – cholecystectomy. I’ll defer thinking about that until the New Year
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.
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.
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?
Monday – 24th April 2017 – Gastro Appointment, Guy’s Hospital
I hadn’t planned this appointment, neither had my gastro consultant but the booking system had other ideas. It must be set to auto repeat every 6 months and doesn’t take into account any ad-hoc appointments in between. I had intended to cancel but I’m pleased I didn’t as there were things that needed talking through. I produced the obligatory list of questions (responses in red) :
1. Biopsy results (from 11th March colonoscopy) – the report from the path lab said that the biopsies were consistent with “quiescent” Crohn’s disease. This result was about as good as it could get. Once you have the disease there will always be some signs of it, even when in remission.
2. Explanation of rising calpro levels given result of recent colonoscopy? – to be honest, he simply did not know what was causing the raised calpro levels. He had been concerned that something had been missed during a previous colonoscopy hence the repeat, in March, carried out by his trusted colleague (and watched by an audience of trainee, international gastroenterologists).
3. If calprotectin tests not giving meaningful pointer to Crohn’s activity what monitoring regime should we adopt? – I had anticipated what the answer would be and I was right. If you start to feel the Crohn’s is becoming active then we’ll take it from there.
4. The upper GI surgeon (Professor), who I saw locally (see previous post) regarding gallbladder removal, was talking about referral to a specialist liver facility “in case of needing a transplant” arising from complications during the cholecystectomy (sounded very drastic) – my gastro agreed that I should be referred to a specialist unit in view of my concurrent conditions. The most likely unit would be the one at Kings College Hospital. The issue of needing a transplant would be a last resort if something went very wrong during the operation. He typed a letter to the Professor suggesting that the referral should go ahead.
5. Awaiting ultrasound appointment (locally) to look at liver, gallbladder, bile duct and portal vein – noted. No date as yet.
6. Pros and cons of having gallbladder removed? – to be discussed with specialist liver facility. Even if I decide not to have surgery I would at least be on their radar so that should I end up having another jaundice incident, that needed urgent resolution, they would already be aware of my case.
7. Fibro-scan to see if liver cirrhosis progressing – he filled in the online booking form to request the scan. (Date now through – 4th September)
8. Current weight 78.2kg. The target weight set prior to my ileostomy (October 2010) was to get UP to 90kg, which I achieved with the aid of 3 x Fortisip (300 calories each) per day. My subsequent decline by 12kg has been quite a loss – whilst I felt fit at this reduced weight it was a lot lighter than the previous target weight. I thought I had better point it out. We would continue to monitor.
9. Next steps – ultrasound scan; fibro-scan; no further colonoscopies at present; follow-up appointment in 6 months time (the booking system should already be doing that); yearly endoscopy at Christmas to check varices + appointment with specialist liver unit.
50 Shades of Grey
For 30 years I really didn’t want to delve too deeply into my health. It was clear, black and white, I had Crohn’s Disease (after the usual “is it IBS debate” within the medical profession). It was centred mainly around the join between my small and large intestines (a common location) and had caused a stricture. Despite this I spent many years in remission.
In the last few years my medical life has become more complex with new issues arising. Most of them are very definitely not black or white.
It started with the dramatic fall in my platelet count that has never recovered (thrombocytopenia). Was it really as a side effect of the Azathioprine I had been taking for 8 years? You would expect it to have bounced back when I stopped the drug. Is it related to my spleen becoming enlarged? Could this be the cause of the platelets issue instead? Two bone marrow biopsies later and there is still no definitive answer.
Next there was the incident where new blood vessels had grown in my esophagus and then burst. A subsequent x-ray showed a blood clot had formed in my portal vein (thrombosis) which had increased the pressure in the veins higher up. Most likely cause of the clot? The current theory is it’s the result of peritonitis following a perforated bowel operation in….1979! Really? That long ago? Apparently there is always a risk of PVT during any surgery. I’ve also seen research that once you have Crohn’s patients you are more susceptible to clots.
As a result of the above incident it was suggested that I might have Primary Sclerosing Cholangitis (PSC) I had a fibro-scan on my liver which showed signs of cirrhosis. What caused that? It certinly wasn’t alcohol related as I drink very little. Is it linked to that blood clot? I then had a liver biopsy and, thankfully, it showed no PSC.
What caused my recent jaundice incident last January? I felt no pain whatsoever only violent shivering and turning yellow. It must have been gallstone related but this is usually accompanied by the most excruciating pain. Again there is a potentially a link between Crohn’s and the increased likelihood of developing gallstones.
…and so to my latest consultation. Yet another puzzle – how to explain a rising calprotectin level with a colonoscopy, and biopsies, that showed I’m in remission.
…and not forgetting the reason I had that second colonoscopy – to see if there was any evidence of the strictures which showed up on the MRI scan, which there wasn’t. Another conundrum and one that had also happened back in 2012.
…and, of course, there’s the biggest grey area in the room – what causes Crohn’s Disease?
I’m not going to lose any sleep over the above. What’s done is done. It’s more out of curiosity that I would like definitive answers. In an ideal world I’d get a gastroenterologist, a hepatologist and a haematologist in a room together and let them reach a concensus on likely causes. That isn’t going to happen anytime soon…….
…but maybe the combination of conditions would at least give me a winning hand playing “Illness Top Trumps”
This is the follow-up post to “Where do we go from here?” posted on 3rd December 2016. (…and my record for future reference….)
Gastro Appointment – Guy’s Hospital 12th December 2016
As the date for the appointment drew closer my stress level increased. Not from the potential medical implications (though some might doubt this!) but the pure logistics of getting to London by 10:20am. It shouldn’t be a problem until you realise we have to rely on Southern Rail actually running a train. As it turned out my train was exactly on time but afterwards there were no more heading to London for 2 hours.
Having arrived at Guy’s Hospital with five minutes to spare I was greeted by a nurse who explained that the clinic was running 45 minutes late. I asked her to put a note on my file that I wanted to see my usual consultant (the top man). The wait increased to just over an hour when I heard my consultant calling my name. TIme to see if there were some answers. I produced my list of questions/comments.
We started out by discussing the outcome of the MDM. Had they been able to reconcile the apparent contradiction between the colonoscopy results and the MRI scan? No, they were at a loss to explain the differences.
The MRI report noted a 100mm stricture in the transverse colon and another in the ascending colon. Neither had been apparent from the scoping. The scan also showed adhesions, one of which was between intestine and bladder. This could potentially lead to a fistula developing between the two. The tell tale sign would be gas when passing urine. That was a new one on me and certainly not something I had experienced so far.
The word that worried me was “fistula” but he pointed out that it was a possibility not a certainty.
The options left were to repeat the colonoscopy, or the MRI scan, but a barium enema, which is a test designed to look at the colon, would be preferable. (Not sure for whom. I still remember the last one over 30 years ago.) Rather than going straight to another procedure he suggested that we carry out a calprotectin test and if the result was the same or higher than last time (512) then it would be time to start practicising the buttock clench, so vital for the enema.
He asked how I felt generally. My answer was “very well” apart from every 10 days or so getting an upset stomach for half a day then back to normal. There was also an incident when I seemed to be leaking fresh blood but it only lasted a day and I concluded it was purely mechanical, maybe a burst blood vessel. He agreed with my conclusion.
I explained that I was keen to remain drug free having been taking no Crohn’s medication since 2010 (post-ileostomy). Was that an option with mild inflammation? Yes. The aim would be to start treatment early enough, to avoid surgery, should the inflammation worsen. (The knife is always a threat though). In line with my aim of not taking any new drugs I hadn’t been to see my GP about starting Questran for Bile Acid Malabsorption. I would remain on just Loperamide and adjust the dosage accordingly.
The one question I forgot to ask was “Does my reaction to Azathioprine (bone marrow suppression) suggest that some of other common drugs may be unsuitable?” That will have to wait for the next appointment.
I would be having my annual upper GI endoscopy at St.Thomas’ the following week and was wondering if we should also be monitoring my liver for stiffening (PSC). He said I should ask the endoscopist as it was their specialist area. The visit would also give me a chance to drop off the calprotectin sample to the path lab. I would then need to email my consultant in mid-January to get the results. Fingers crossed for <512. Clench.
At the end of the appointment I mentioned that I had eliminated a major element of stress by no longer commuting to London and have virtually retired. As I now had time in my hands I would be keen to do something for the IBD Community.
What is so nice about these appointments is that you never feel rushed. Every question gets a considered answer and all decisions are made jointly. Excellent.
After the appointment it was off to have lunch with a fellow IBD sufferer and then on to meet up with an old colleague for a coffee before attempting to get a train home.
Do you have a “quotation that inspires you”? The one I would choose is probably not an obvious one for a health blog. You might have been expecting me to have trawled through the “inspirational” websites to find some relevant, life affirming words. I hope you’re not disappointed….
Here goes. Over to that well known US philosopher, Donald Rumsfeld. It’s the quote he was ridiculed for at the time, unfairly in my opinion, as it makes perfect sense. In case you don’t remember what he said :
“…as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns- the ones we don’t know we don’t know.”
Bear with me, it will become clear. To illustrate the point I’m using one of my favourite subjects – bile acid malabsorption (BAM). Maybe “favourite” isn’t the right description, make that “a subject I have felt the need to write about several times before”. There’s barely a day goes by when I don’t see a comment, on one of the IBD or BAM forums, from someone who has just been diagnosed with BAM and many times the post goes on to say that their doctor had never heard of the condition before. That’s the first hurdle to overcome.
I am a fellow sufferer as a result of losing my terminal ileum. (I had an ileostomy back in October 2010). Before the operation I was offered the chance to take part in an Enhanced Recovery Scheme at one of the top London hospitals. Part of the ethos behind this regime is to fully inform the patient of what will happen at all stages of the process – pre-op, during the hospital stay and beyond. Was I told about BAM before the operation? I’d have to answer “maybe” and this brings us to the point of this post. Let me explain….
I was told that after the operation absorption of vitamins and salts would be much reduced due to lack of a terminal ileum. The surgeon repeated this message on his ward round post-op. If someone told you that your body wouldn’t absorb salts properly what would you take that to mean? I took it at face value, I would need to up my intake of salt (sodium chloride) to compensate and take supplemental vitamins. I didn’t see the need to question the statement as it seemed very clear.
It wasn’t until I was diagnosed with BAM (4 years after the ileostomy) that I found it has an alternative name “Bile SALT Malabsorption”. Suddenly the comment about not absorbing “salt” took on another meaning. You can see the problem.
This is where Donald Rumsfeld comes in. I heard what the Enhanced Recovery Nurse and the surgeon told me. I understood what the words meant – to me. I didn’t appreciate that I didn’t understand what the words meant to them. From their point of view – they were using their everyday, medical terms to describe a likely problem to a patient.
From this experience I have learnt that you must always question what you are being told and do your best to get the doctor, consultant or surgeon to explain, in simple terms or non-medical terms, exactly what they mean and what they perceive the implications to be.
I keep coming back to those particular words in the quote “there are things we don’t know we don’t know.” Try repeating them to yourself as you enter the consulting room…..
At the moment it makes a change to write a post not connected to the #HAWMC (Health Activist Month Writer’s Challenge) that I’ve just completed. Having said that, there is still a link because I have mentioned in a couple of those posts that I find blogging therapeutic. It helps me to be objective and get things straight in my mind.
This post is therefore primarily for my own benefit but any thoughts/comments/questions welcome.
I’m off to see my gastro consultant at Guy’s Hospital in just over a weeks time (12th December). I’ve already started getting my list of questions ready but I want to make sure I capture all the relevant details. I’m expecting us to agree next steps given my recent test/procedure results.
Since my reversal operaion in June 2011 I’ve been taking no Crohn’s drugs at all and everything has pointed towards me being in clinical remission. I really don’t want to take any more medication than the current Omeprazole, Propranolol, Loperamide and iron tablets that I am on for PVT (Portal Vein Thrombosis).
When I my consultant, almost a year ago I said “I feel fine. I can’t see why we shouldn’t stretch these appointments out to yearly intervals.” I don’t know exactly how long it was before I started to regret it, probably about three months, as the bathroom dashes had returned. As ever, with IBD/Crohn’s, it’s not easy to pinpoint what has caused the change and now that I have the addition of Bile Acid Malabsorption to consider it makes it even more difficult.
I tend to discount stress as I like to think I manage it quite well. At that time I was commuting to London, or more precisely Canary Wharf, and the travelling was always unpredictable, mainly due to the truly appaling service provided by Southern Rail and the frequent RMT strikes. To be sure of getting a train meant getting up at five o’clock in the morning. Maybe stress did play its part this time. My wife has said I seem a lot more relaxed now that I’ve given up work. (I decided to semi-retire at the beginning of November but I’m open to offers for short term assignments.)
The upshot was that I emailed my consultant and explained the problem. He suggested a calprotectin test (stool sample) and we would decide what to do next depending upon the result. After three weeks (28th May) the test report came back showing a considerable jump upwards to just over 400, suggesting active inflammation.
A colonoscopy was arranged – 13th July – and the finding was “ongoing mild colonic crohn’s disease. No evidence of crohn’s recurrence in the neo-terminal ileum.” The previous scoping (February 2015) noted “mild, patchy erthema (redness) throughout the colon” but concluded “quiescent (inactive) crohn’s disease.”
Because a colonoscopy can only just reach into the small bowel an MRI scan was booked to look at my small bowel. I didn’t have to wait long – 29th July with a follow-up appointment on 5th September to discuss the results. Suprisingly, the MRI showed a stricture in my colon even though the scope didn’t. Very strange. This conundrum would be put to the Gastro Dept’s next MDM (Multi Disciplinary Meeting).
The MRI scan also showed adhesions, which are usual after surgery, but I would like to know a bit more about locations. I’ve been getting an ache around ny anastomosis for a number of years but it seems to be worse in the last week or so. This may be down to lifting a couple of “heavier than they looked” objects. Yes, I know it was stupid but male arrogance etc…..
I’m intrigued to know how the MDM reconciled the apparently contradictory colonoscopy and MRI scan results? I would have thought the camera results would take precedence. I also need to understand if the adhesions, on the scan, are just confined to my rejoin (terminal ileum). We’ll talk about their conclusions on 12th December.
We also discussed the large jump in calprotectin level and he asked me to repeat the test to check whether this was a rogue result. Unfortunately the result, when it came back, was even higher.
Looking at the calpro graph it’s apparent that somewhere between November 2015 and May 2016 the inflammation restarted.
I mustn’t forget to mention that a few weeks back I was having a “do I call an ambulance” moment when I started loosing some blood from where the sun don’t shine (no, not Manchester). I concluded that due to the fact it was bright red it must be very fresh and the result of surface injury and did not warrant 999. By the next day I was fine again.
Over the last few weeks my digestive system seems to be back on an even keel so is it possible/advisable to continue without medication even though mild inflammation is present? Is any damage done by not taking medication for such a long time? Does the calpro trend suggest that the inflammation is getting worse? I have noticed that I can sometimes feel the action of peristalsis across my middle which I’m assuming is matter passing along the transverse colon. Maybe this ties in with the mild inflammation.
I will mention that I have not talked to my GP about Bile Acid Malabsorption as my digestive system seems to have returned to normal with just the odd blip every 10 days or so. Is this return to normality as a result of no longer commuting to London?
I’m booked in for an upper GI endoscopy on 21st December to monitor the growth of varices in my esophagus. I’m wondering if we should be doing any further monitoring of my liver to look for worsening of the cirrhosis. Add it to the list.
I just need to turn the above into a succinct list and I’m ready for the appointment. I just hope the newly announved ASLEF ovetime ban doesn’t stop the trains from running.
Challenge #1 – Crohn’s – this time last year a regular calprotectin test showed that my Crohn’s disease looks like it has reactivated after 5 years of drug-free remission. This summer I had a colonoscopy and an MRI scan which have given slightly contradictory results. I have a gastroenterologist’s appointment on 12th December at which we will discuss the evidence and the way forward.
I am reluctant to restart drugs for the Crohn’s, unless absolutely necessary, but it may become inevitable. The biggest challenge I face, healthwise, is to make the right, informed decision on what is best for my future.
Challenge #2 – BAM (Bile Acid Malabsorption) – an ongoing problem which resulted from losing my terminal ileum (ileostomy surgery) 6 years ago. So far it has been kept under control bytaking 2 Loperamide (Imodium) capsules each day but if that stops working I have the option of going to see my GP and asking him to prescribe a binder (Questran). Yet more drugs. I came close to it earlier this year.
Challenge #3 – PVT (Portal Vein Thrombosis) – the ticking timebomb. Yearly upper GI endoscopies look for the regrowth of (varicose) veins in my esophagus. It has worked out that every second year the veins require ligation (having rubber bands around them). The issue is that should they regrow quicker and then burst I have a finite time to get to hospital and a blood transfusion hence the ticking timebomb.
Challenge #4 – Reducing my use of SoMe – it’s very easy to become addicted to the likes of Twitter and Instagram. I intend to limit my time online which should help my mental rather than physical wellbeing.
Challenge #5 – Gain weight – over the last 12 months or so I’ve lost around 10kg (maybe as a result of #1). I would like to put on 5kg back on if possible.
Reading the above you may think I take a very gloomy attitude to life. I don’t but I do like to be realistic and to have a clear understanding of the possible issues that will arise and what is going on inside my body.
Five Small Victories
Victory #1 – Achieving a good, long walk of 10km or more, especially exploring London. It help clear the mind.
Victory #2 – Finishing a blog post. The process of writing a post is another “good for the mind” exercise. I like to think about what I write rather than just put down the first thing that comes into my head. By being analytical it helps to come to terms with health issues and get them into perspective.
Victory #3 – Medication. Remembering to take the right tablets at the right time and to re-order in time not to run out.
Victory #4 – Encouragement. Being able to give encouragement to other IBD patients when they are going through an uncertain or bad patch.
Victory #5 – Waking up and knowing it is going to be a good day as far as Crohn’s/BAM is concerned. Can usually tell within the first 10 seconds the state of my digestive system!
19th May – IBD Awareness Day – and my blog is in a sort of remission. It’s not cured as we all know there is no cure for blogging. Achieving the next big milestone of 50k hits may prove difficult if it goes into deep remission although the steady stream of Russian porn site spiders searching for “anaesthetic fetish” stories (yes, honestly!) may help get there.
The days of weekly, sometimes daily, updates seem like a distant memory. Clusters of outpatient appointments and procedures have been thinned out to 6 monthly intervals. The next scoping session will be late October and there maybe a colonoscopy just before Christmas.
How does this make me feel? Mixed emotions oddly enough. I am obviously pleased to have reached some stability healthwise but I’ve grown so used to having to think about medical matters, given 2 or 3 years of intense medical activity, that it feels strange to have more time to devote to other aspects of life. Producing this blog has greatly helped me to get my health issues into perspective and the very regular appointments/procedures have proved to be a rich source for writing posts. This blog was set up for the specific purpose of recording “the rich vein of experiences along the Crohn’s highway and some of its detours.” I’m hoping that some of the content might just strike a chord with other Crohn’s sufferers and they will realise others understand what they are going through or maybe give them some warning of what could lie ahead.
My health related creative efforts have now been redirected into writing a book based on this blog. It’s nearing completion which, as my wife would point out, is the status of most things I start. (Anyone familiar with the Belbin Theory will understand the problem – low score in the Completer/Finisher category)
I still have some health concerns. The diagnosis of severe Bile Acid Malabsorption late last year has given a name to, and a reason for, the continuing dashes to the bathroom. Now I have this explanation I can visualise what the problem is, what is likely to exacerbate it and what can be done to manage it. I’ve become strangely relaxed about the issue.
My other health concern is keeping fit. Statistics show that if you’ve already had surgery for Crohn’s it is likely that you will end up under the knife again. The speed at which you recover is, in part, helped by being fit and up to weight at the time of the operation. My first operation was 1979, the second 2010 – a 31 year gap – who knows when it will happen again but I want to be as prepared as possible. My chosen regime is to walk whenever possible. I’m trying not to become too obsessive about the distance I walk each day but it does feel good when the app on my phone announces “All-Time Record” (currently 17.6 km).
The impetus to keep walking is helped considerably by working in London. There are so many possible routes to get to and from work that it never becomes routine or boring. There is always something new to see and photograph. At 7:00am there are very few people about. I’ve set myself a challenge of posting at least one Instagram photo a day (account name = crohnoid) with either a new angle of an existing view or something transitory or a new experience.
Having rambled on so long it’s time for another appointment……………
Tuesday 5th May 2015 – Gastroenterology – St.Thomas’ Outpatient’s Clinic
The forecast said 50 mph winds and I could vouch for that. Crossing Westminster Bridge was “interesting” and made more so by the polar bear halfway across. I think it was the continuation of the PR stunt for SkyTV.
This was to be a routine, six monthly appointment. I had prepared a short list of questions to ask.The visit started as normal. Get weighed. Wait. Go to Room 18 – see Registrar. Explain that I would like to see usual consultant for the sake of continuity. Return to waiting area. Wait for new message to appear on laser display screen. Go to Room 19. (Appointment time 2:50pm, in with the “right” doctor by 3:20pm. Not bad).
I knocked on the door, list at the ready, and entered. I got a warm welcome from my usual doctor who had a medical student sitting in with him. My notes were on the desk. The file was so thick it looked like it couldn’t take one more sheet. “We need to get a new one of these”. I replied that I might just have the solution as I had written a book covering my medical history and experiences including the treatment at St.Thomas’. He seemed genuinely surprised. I assured him it was for real and that I was currently going through the final stages of editing and proof reading. I reassured him that he wasn’t mentioned by name and that it was all positive anyway!
That prompted a discussion on doctor/patient communication and how patients react to what they are told. He considered himself to be a good communicator (I’ll second that) but was concerned that without him realising it a seemly innocuous remark, made in passing, could take on far more significance to a patient. We then went on to discuss when and where it is appropriate to tell patient potential bad news. I mentioned that there were two things I wish I had been told about prior to surgery, and that they were on my list…….
1) I had been quite tired over the last couple of months and even the B12 injection three weeks ago didn’t seem to have made a difference. He suggested that next time I had a blood test I should get checked for iron and vitamin D levels. I did mention that last week I had walked nearly 50km to and from work and at lunchtime, so maybe I should be cutting back a little. That lead off at a tangent to the merits of exploring London early in the morning, or on a Sunday, when the streets were quite deserted. I couldn’t resist mentioning the Sky Garden (at the top of the WalkieTalkie building) that we had visited a few weeks ago. (There are a few photos at the bottom of the post).
2) As ever the ache around my anastomosis (join) comes and goes. It was worse after physical work or with a full gut. We had previously agreed it was probably just a mechnical issue as the recent colonoscopy had shown no sign of inflammation. He wondered if there might be some inflammation in a part of my small intestine that neither the colonoscopy or the previous endoscopy had reached. There was a technique, called a balloon assisted enteroscopy, that allowed the scope to propel itself right through the small bowel…….that’s enough thinking about that one. I asked if a capsule endoscopy would be better but he replied the disadvantage for some patients was the possibility of the capsule becoming stuck if there was a stricture along its path.
Maybe it was time for another MRI scan as the last one was three years ago. He recalled that it had suggested inflammation but the subsequent colonoscopy had shown nothing. He said that sometimes you could get conflicting messages with no explanation as to why the difference.
3) The plan going forward. The current monitoring regime consisted of six monthly calprotectin tests (with possibility of a colonoscopy if high reading), yearly upper GI endoscopies to check for growth of esophageal varices and six monthly appointments with haematology to keep an eye on my low platelet count/PVT. Were there any other tests I should be having that might be age related? “No.”
He set the next appointment or six months but I will fine tune the actual date, nearer the time, so that it is after the annual endoscopy. It will also be down to me to make sure the results of the calprotectin test are available.
4) BAM. I’m becoming increasingly convinced that Bile Acid Malabsorption is a subject that not enough patients, who have been through IBD surgery (ileal resection), know sufficient about. This was one of the two subjects I wish had been discussed prior to surgery. It could be part of the pre-op assessment with either the Enhanced Recovery Nurse or the surgeon.
The other thing I wish I’d been warned about was ileus, or the lockdown of the digestive system, following surgery. I explained that unless you have suffered intense nausea you have no idea how bad you can feel. I wasn’t joking when I said that it was a good thing the windows on the 11th floor surgical ward at St.Thomas’ were non-opening. I really would have jumped! Both of them looked surprised.
5) This one was more out of curiosity – is there a link between shingles and having an IBD flare-up? In preparing my book, I had found a reference to the bad attack of shingles I suffered in 2005. As I read on I realised that a flare-up started shortly afterwards, breaking the remission I had been in for quite a while. He wasn’t aware of any link, in his experience, but there were common factors such as stress that might cause a trigger.
6) Getting involved. I’ve been cutting back on work recently. For the last six months I’ve only working three days most weeks. Whilst I have plenty to keep me occupied in my spare time I felt I could at least use part of it to give something back to the IBD Community but wasn’t sure how I could help. He ran through a number of ideas that they had been discussing at Guy’s/St.Thomas’ – research, patient panels – where they would like to include “lay” representatives. I asked him to bear me in mind for such an opportunity.
Appointment over and a chance to brave the high winds again. By now they had died down a little and the sun was shining so I decided to take a slight detour on my route back to Victoria and walk down the Albert Embankment. It’s not a walk I often do but will certainly repeat it.
If all goes to plan the next post should be to announce the completion of my book. Still need a decent title though. Suggestions welcome.
I have covered this topic a couple of times before. Recently I have seen an increase in the number of questions and comments on IBD forums relating to BAM. I believe that increased awareness would help many Crohn’s and IBD patients.
I produced this simple slide, aimed at one particular group of at-risk patients. It’s self explanatory.
Here is an extract from a document published by NICE (National Institute for Health and Clinical Excellence) – “Crohn’s disease is sometimes treated by ileal resection. The prevalence of bile acid malabsorption in people with Crohn’s disease in clinical remission who have had ileal resection is high (97%)“.
My own situation : ileal resection and stoma – October 2010; reversal – June 2011 and clinical remission ever since, confirmed by colonoscopy a fortnight ago. I had expected after the operation, and being in remission, that my digestive system would have returned to pre-Crohn’s normality. No. I would often suffer from an “upset stomach” with its attendant rushes to the bathroom. I kept asking myself, and questionioning on this blog, had I eaten something dodgy; picked up a virus or was I undergoing a Crohn’s flare?
I mentioned it at each outpatients appointment but it wasn’t until Autumn 2014 that my consultant suggested I should undergo a test to confirm if I was suffering from BAM. Of all the tests we get put through this must be one of the easiest. It’s called the SeHCAT test and involves swallowing a capsule containing a mildly radio active substance which dissolves and becomes a marker absorbed by your digestive system. You then have two x-rays, one week apart, and the x-rays the analysed to see how much marker remains in your system.
Anything less than 15% of the marker remaining is considered to be malabsorption. My own reult was under 1% which is classified as “severe”. There are drugs available to treat the condition. The most common appears to be Questran but some patients find it diificult to tolerate taking it. So far I have managed to keep it under control with good, old Loperamide.
However, since being diagnosed I have found my symptoms have greatly improved, not because of taking new/additional drugs but because I now know what my digestive system is up to and it’s not a sign that I’m about to descend into a flare. I feel a lot more relaxed if I do have an upset stomach for a couple of days.
My understanding of the BAM mechanism is that during the digestive process your stomach uses bile acid to break down the food you eat. When the acid/food mixture reaches the last section of the small intestine, the ileum, the acid is reabsorbed and passes back into the biliary system. If you no longer have an ileum the acid passes from the small intestine into the large intestine, causing diahorrea. (The ileum also absorbs vitamins, which is why it is important to supplement them, for instance having regular B12 injections)
I hope, by writing the above, I’ve managed to convince you to add BAM to the list of questions you ask your consultant/surgeon next time you see them. This is especially important if :
a) You have had an ileal resection and suffer from chronic diahorrea
b) You are about to undergo surgery which could involve ileal resection, especially the removal of the terminal ileum
Please feel free to copy the slide above and pass it on as widely as you can. It might just help fellow Crohn’s/IBD patients gain a better quality of life.
When I was doing the research for this post I came across this Research Proposal from Guys and St.Thomas’ Hopital. Maybe BAM really will achieve greater awareness in the not too distant future.
I’ve been trying to think positive thoughts. A new year; a new opportunity to put Crohn’s on the back burner, or maybe not….
Thursday 15th January 2015 – St.Thomas’ – the first appointment of the year. Not one I had been expecting until the letter came through the post. I was in half-a-mind to cancel. It was the follow-up to seeing the dietician in October 2013 to talk through the benefit of low FODMAPs.
Since our last meeting I had a new diagnosis to contend with – Bile Acid Malabsorption. We spent about 40 minutes discussing many different aspects of diet. She recommended that I try and increase the amount and variety of fruit and vegetables in my diet. She also suggested taking multi-vitamins each day as the loss of my terminal ileum would mean not absorbing them properly from normal food.
I seem to be unable to get my BMI out of the overweight range (currently 26.1). She told me not to get too hung up by the numbers. Whenever I’m working in London, generally three days a week, I try and walk at least 10km during the day. I’m trying to achieve the balance between keeping fit and keeping the weight on, which may sound a little odd. My gastro consultant likes his patients to be on the slightly heavier side in case there is the sudden need to undergo an operation. (I lost around 5kg after my last one). I want to keep fit for the same reason. As you get older the recovery process takes longer so the fitter you are at the start, the better.
Tuesday 27th January 2015 – St.Thomas’ – first gastro appointment of the year was originally planned for 13th January but I had, stupidly, taken my calprotectin sample into the pathology lab too late. A quick email to my consultant’s wonderful secretary and she slipped my appointment back two weeks so the results would be available.
I arrived shortly before my allotted time and waited for my name to appear on the “laser display screen”. It must have been about 15 minutes before it appeared – “Go to Room 17”. When I opened the door one of the registrars greeted me and introduced herself. I didn’t stand on ceremony. I explained that I really wanted to see my usual consultant, for continuity’s sake, and was prepared to wait accordingly. She was fine with that.
Back to the waiting area. Before now I’ve had to wait anything up to another hour but this time it was only ten minutes – “Go to Room 18”. When I entered the room my consultant had two other doctors sitting in with him, one visiting from Greece; the other a junior doctor working within the department.
I produced the list and my GI explained to the others that I always had a list and that he liked working that way.
1) What did the calprotectin result show? 188. Not good. Previously I had been around the 50 mark. This new result suggested that inflammation had returned. Bugger!
2) Blood test results? All OK except platelets, although these had now risen to 86, up 20 points, so actually an improvement.
3) Do I need a colonoscopy? Yes. Given the elevated calprotectin level the only way of checking for inflammation was to go in with the camera. I noted that, thankfully St.Thomas’ use Citrafleet which only requires drinking 300ml of liquid and a small bottle of senna. The thought of drinking 4 litres of Klean Prep, as used by some other hospitals (and in Greece BTW), filled me with dread. Request typed into computer with note about Citrafleet. Just need to wait for appointment to come through. My consultant would be driving the camera.
We then had a short discussion on how much sedation patients are given. I like to be as awake as possible so I can ask questions there and then and not have to wait for the follow-up appointment to get any bad news. The Greek doctor said if he was having it done he would want to be out cold!
4) I mentioned that over the Christmas period I had felt really rough – lower back pain extending down the backs of my legs; and ache around my midriff and very tired. As always with Crohn’s it was difficult to know if it was the Crohn’s itself, a virus I had picked up or overdoing sweeping up leaves.
5) We then had our usual conversation about the ache around my anastomosis, which comes and goes, especially after physical exertion. He said that after surgery it is entirely to be expected and that hard, physical effort would probably aggravate it. One to park I think.
6) I ran through my discussion with the dietician – see above.
7) More an observation really – I am very surprised that two capsules of Loperamide are controlling the Bile Acid Malabsorption and that I currently don’t need to take Questran or similar.
8) My other observation was the lack of discussion (as far as I can see) of BAM given the prevalence in patients after ileal resection. I felt that it really should have wider coverage and that the SeHCAT test should be routine given the severe diarrhea it can cause and that the symptoms may appear to be the Crohn’s itself and get treated as such. I quoted the NICE statistic that I had found.
9) I asked him to pass my thanks on to his secretary. She really is exceptional and always goes the extra mile to get things sorted out. He agreed and said how pleased he is that she works with him.
10) I wondered if the Gastro department ever held open Q and A sessions that enabled patients to come along ask general questions about Crohn’s/IBD to increase their own understanding of the disease. He replied “not at present” but they had been discussing ways of engaging better with their patient base. He would pass my name onto the person charged with the task.
I explained that I’m getting to the stage where I would like to give up work and devote some time to helping the Crohn’s community although I felt I knew very little about Crohn’s and in the grand scheme of things had escaped very lightly compared to those who had had 20+ operations. He felt I was doing myself a dis-service.
And that was it. Follow-up appointment for six months time but, as he pointed out, the next time he saw me would be from the wrong end of an endoscope. His “list” had now been moved to the new Endoscopy Suite at St.Thomas’ which pleased him as the equipment was better than his old clinic.
I walked back to Victoria Station somewhat disappointed. I had hoped the calprotectin level was still around 50. If the colonoscopy does show that the inflammation is returning the next question will be how to deal with it. We know Azathioprine isn’t an option.
Next planned appointment – Haematology at Guy’s – 11th February 2015….or will the colonoscopy come along first?