Category Archives: Crohn’s Disease

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.

Tired and Emotional

Emotions

I’m not an emotional person. I don’t know whether it is simply the way I’m made or that I had any emotion knocked out of me as a defence mechanism to cope with the early death of my father. In some ways this lack of emotion may have helped me survive those challenging experiences and gory sights I mentioned earlier. So I was surprised that, when researching my book, I became quite emotional when reading the account of a meeting with one of my surgeons shortly after my ileostomy. It still has the affect to this day.

“He remarked how well I looked considering: “what they had done to me”. He had joined his old colleagues at St.Thomas’ on the day to take part in the operation which he described as a “classic”. He said it was one of the most complex they had ever carried out. My innards were in a really bad way.

He had a trainee doctor in with him for the clinic and was showing her my pre-operative CT scan. He described it as looking like an octopus. Where had I heard that before? My intestines had, in places, attached themselves to other parts of the body such as the back muscles. That last comment was quite a revelation and would explain the back pain that I had been suffering from for the last couple of years. I dread to think what would have happened if the surgery hadn’t been carried out when it was.”

I’ve tried analysing what triggers these feelings but had not been able to reach a conclusion. Then I heard this. Maybe this explains why…..

Adrian Chiles was interviewing the radio presenter Mark Radcliff about the cancer he had been treated for. Here is part of what he said “I took a little bit of counselling at the Maggie Centre ….I’m not someone who cries a lot but when I went into theCentre the woman, who was counselling me, asked ‘So what point are you up to?’ and I just burst into tears. She said ‘Have you just finished your treatment?’ It’s a very common thing at that point. You realise the struggle you’ve really been through. It dawns on you.”

Maybe it dawned on me just what my mind and body went through and come out the other side smiling and with a very positive view of the future. Do other IBD patients experienced similar emotions?

Postscript

After writing this post I was discussing coping with Crohn’s Disease with my wife and mentioned my theory that a lack of emotion might just have helped me deal with it. She genuinely surprised me by saying that if she had Crohn’s she “wouldn’t want to have gone on” due to the embarrassment of the tests and procedures we undergo, the stress of being taken short and the pain we experience. It brought home to me how differently each of us can react to this disease.

….and the tired? Two doses of Vedolizumab may be the cause of additional fatigue

Flushed with Infusiasm

At the end of my last post I had made the decision to start Vedolizumab (Entyvio) and was on the point of contacting the IBD Helpline at Guy’s and St.Thomas’. I dropped them an email, which is how contact is made nowadays.

The next day I had a call from the hospital to arrange my first infusion. “Vedo days” are Wednesdays and Fridays. As luck would have it I already had a haematology appointment arranged for 10:30am on Wednesday 29th May so the infusion was booked for an hour later (on the basis that haemo clinics usually run on time). A new chapter in my “Crohn’s career” was about to be written.

The last infusion I had was at the end of 2009 (Infliximab) and that took several hours to complete so I was intrigued to know if Vedo would be the same. I canvassed the opinion of some other “infusees” and the concensus was that, due to extra monitoring, I should allow about 4 hours for the procedure. Forewarned is forearmed.

Wednesday 29th May 2019 – Guy’s Hospital – IBD Infusion Unit

In the interim the haematology appointment had been cancelled due to the consultant being away. I took advantage of the free time to have a walk along the Thames, one of my favourite pastimes, and then a quick visit into Tate Modern to use their “facilities” (recommended).

View from Blackfriars Bridge
Cruise Liner tied up alongside HMS Belfast

I arrived at the Unit with a couple of minutes to spare and handed in my calprotectin sample.  I was asked to settle myself down in one of the infusion chairs. A nurse came over to introduce himself and ask me a few questions before starting the infusion. The standard ones : what medications are you on; are you allergic to anything, how are you feeling? etc. He warned me that I might feel more fatigued than usual afterwards.

The nurse explained that he worked for Takeda, the company that manufactures Vedo, but was seconded to the NHS. I asked how long the procedure would take and was surprised when he replied “30 minutes Vedo followed by a 30 minute saline flush. 60 minutes in all”.

Cannula inserted; Vedo connected; and I settled down to read a book about heart surgery (“Fragile Lives” – Prof.Stephen Westaby). I know as Crohn’s patients we all go through some fairly challenging experiences and witness some gory sights when in hospital but even I found myself squirming at some of the Professor’s descriptions. Luckily there are no photographs!

Vedo finished, flush attached, back to the book and what seemed like a few minutes later the whole procedure was over. I was offered coffee and biscuits and then I was on my way home. My next infusion is set for 12th June., immediately after a rebooked haematology appointment.

Wednesday 12th June 2019 – Guy’s Hospital – IBD Infusion Unit

Time for my second infusion, but first there was a Haematology appointment to get out the way and with it a blood test. That meant I already had one hole in my arm and now I needed another! Once I had answered the standard set of questions that you have before any infusion the nurse inserted another cannula and I settled down with a book for the half hour infusion and then a further half hour flush. The only difference with my previous visit is that there were no coffee or biscuits on offer!

View from the atrium at Guy’s Hospital

I had been hoping that the calprotectin result for the sample I took in on 29th May was available but unfortunately it takes more than 2 weeks for samples to be processed. (I wonder how the home testing kits can give a result so quickly?)

Next infusions booked for 12th July and 9th August.

Never one to waste a visit to London I spent the afternoon at the Royal Academy Summer Exhibition. Not a classic year in my opinion.

Royal Academy – Summer Exhibition 2019

Is the Vedolizumab Working?

How do I feel? Maybe a little more fatigued but no great difference. Is it working? It’s far too soon to know after just one dose but how will I know if it is working anyway? A little explanation –

The lead up to being prescribed Vedo is described in previous posts but maybe I should do a brief recap. My calprotectin level started showing an upward trend towards the end of 2015. Subsequent colonoscopies and small bowel MRI scans showed nothing that would account for this so the issue was parked as a “mystery’”. During that period I’ve been feeling fine. In fact I’ve been OK since my reversal, in 2011, and not taking any Crohn’s drugs.

Calprotectin Test Values

It wasn’t until a gastro appointment in October 2018 that I suggested we should do some further investigation as my calprotectin level had reached 1300. A capsule endoscopy had been mentioned in the past as it would get a good look at the whole of my digestive tract. My consultant agreed it was time to give it a go and one month later I was strapping on the recording unit and swallowing the capsule.

I did not get an official copy of the results until March 2019 but already had an indication, from a conversation with the Head of Department, that it showed mild to moderate inflammation in my small bowel. When I saw my consultant again we discussed starting Vedo . He had already obtained the budget to cover it (approx. £1,000/dose). How would we know if it was working?

If I had been suffering flare-ups then judging its effectiveness would be simple but as I am not feeling any physical symptoms the only monitoring will be regular calprotectin samples. I forgot to ask how often constitutes “regular”. At the end of the first year I will have another capsule endoscopy and an MRI scan.

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.

Pre-MAB

I need some help from my fellow IBD patients. I had a phone call from one of the IBD nurses at GSTT explaining that they wanted to start me on Vedolizumab. The last time I was in this situation was August 2009. I was being given the choice – Infliximab (Remicade) as a “final, last chance, before surgery”. A real no brainer and no need for a long list of questions before making the decision. Who would choose the knife over a drug? (That would make a good subject for a new post)

Now, nearly a decade later, I’m being offered another MAB. (I won’t go into the reasons why but if you are interested this link opens a post, explaining the issue and what it’s like to have a capsule endoscopy, in a new tab – http://www.wrestlingtheoctopus.com/fantastic-voyage/).

I won’t make any decision until I have spoken to my gastro consultant – appointment set for 15th April.  Ahead of my meeting I need to get a list of questions together, usually a fairly simple task, but this time it is uncharted territory…..and that’s where I could do with your help. Have you had to make this decision? What questions did you ask/wish you had asked?

Here’s my latest list (26th March). Are there any glaring omissions? I’ve split them into categories :

Blood test results
  • What did the nine phials of blood taken recently show?
Capsule endoscopy results
  • What exactly did the capsule endoscopy show in the way of severity of inflammation and locations? Was it confined to the small bowel?
  • Would it account for pain around midriff? (Could be the hernia that the upper GI surgeon identified a few weeks ago, or maybe adhesions or scar tissue from laparotomy)
  • Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
History
  • 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.
  • The above suggests that there is no urgency to start on treatment. Is this right?
  • My QOL is good apart from an ache on my right side which the Upper GI surgeon has diagnosed as a post-operative hernia at the site of my ileostomy
  • Surgeon does not want to carry out cholecystectomy or even hernia repair due to varices growing around gallbladder and elsewhere within abdomen. This suggests that I should try and avoid any colorectal surgery at all costs.
Vedolizumab
  • What was the gist of the discussion that resulted in proposing Vedo?
  • 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? (BAM, PVT, splenomegaly, thrombocytopenia, gallstones)
  • Ongoing monitoring regime? Frequency?
  • How good a measure would calprotectin be for progress in treating small bowel Crohn’s?
  • Does the efficacy of Vedo differ as one gets older? Do the side effects change?
  • Reason for needing chest x-ray
  • Haematology suggesting another bone marrow biopsy. Do we need to wait for result before making decision?
Alternatives
  • What if I decide not to go back onto Crohn’s medication at present?
Reasons for not wanting to go onto Vedolizumab
  • Side effects of Vedolizumab.
  • Long term commitment to an infused drug
  • Trips to London (I love London so you would think a few more trips would be welcome but as I gel older will I really be so keen?)
  • Is there the opportunity to have infusions at a local hospital?
Iron levels/Hb
  • What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?

 

Medical Record

Temporary tattoo on forearm. QR code links to medical record summary (it really does!)

This image gained some interest when I posted it on Twitter so I thought I would explain it’s genesis. From the outset I wish to make it clear that it is my solution to my specific needs. I’m not proposing it as a universal solution for quick access to medical information, more a stimulus for further thinking and discussion. (I’m also not claiming this as an original idea – there is at least one patient in USA who did it first)

The Trigger

In February 2017 I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history  and medication.

Next I saw an A&E Registrar. He asked the same questions but what would he have concluded if I hadn’t been able to fill in the details? He would have been confronted with a patient with a large scar up the midline, the hint of a stoma location and an appendectomy incision. He wouldn’t have known why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that : I have Crohn’s disease; the attempt to remove my appendix had been aborted; I have Portal Vein Thrombosis resulting in additional veins growing in my esophagus (varices) and around by gallbladder; that my spleen is enlarged; or that the low platelet count is now normal for me. Valuable time could have been lost trying to investigate the problems that were already known about and being treated.

Do It Yourself

As a result of my A&E visit I wondered if there was a standard, minimum set of data that should be available? Was there a standard format for the data? I searched the internet and could find nothing. A good starting point would therefore be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. There are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these appear to be US based only and the data held was not in sufficient detail.  How feasible would it be to produce a standalone, wearable device?

Attempt 1

First attempt – using a USB bracelet. First task – decide upon data and format. I settled on two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents were stored as pdf files and linked to various back-up documents such as laboratory or histological reports.

USB Bracelet

There were two problems :

The format of the data was such that it would still require a fair amount of time to wade through and understand the aetiology of ,and relationships between, the various LTCs. This was solvable but the second issue would be insurmountable.

In order to protect the system from viruses it is unlikely any NHS computer would allow the reading of an external USB stick. Time for a rethink.

Back to the Drawing Board

A couple of years ago I drew  a diagram to try and understand the aetiology/relationships that I mentioned above. I used the metaphor of a jigsaw as that is how my health appears to me. The penny then dropped that it would be a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This illustration shows an early version of the drawing.

Early version of “jigsaw” diagram

…and then someone set me the challenge of making an interactive version that would open up the relevant documents or test results when you click on an element of the diagram. This would make the ideal interface for my medical record.

Basis of interactive medical record jigsaw

To get over the USB security problem I settled on holding the data on a server and then accessing it via a QR code. Initially I thought of using a dog tag style SOS pendant with the code engraved on it but I have yet to find a company that can do this as a one-off at a reasonable price. I could use a conventional SOS bracelet with a printed QR code inside but why not try a tattoo?

I didn’t want a permanent tattoo as it would not allow for any future changes. I opted to try making a temporary one using those kits that are readily available online. After a couple of false starts, mainly due to not reading the instructions carefully (it’s a man thing), I had a readable QR code tattoo. Where to stick it? The ideal position would be somewhere that is not generally visible but would be seen by an HCP. I chose the inside of my forearm, just above the wrist. Anyone looking to insert a cannula would be bound to see this and hopefully use a phone or tablet to scan the code.

(I’m counting on the HCP having the curiosity to try the link and once  opened realise the importance of the information available. You could call this a “leap of faith”)

Future Developments

Life would be so much easier if the NHS had a universally accessible records system that held all our medical details, linked to our unique NHS patient number (only needs a simple, unchanging tattoo). I can’t see that happening in my lifetime given the success of previous attempts.

Clearly I have no issues about the confidentiality of my medical data or I wouldn’t be writing/publishing this post. I know that many patients do and this needs to be taken into account. I am willing to trade confidentiality for the speed at which my medical record could be read should I be involved in an emergency.

Answers

Why Does It Hurt?

View from the South Bank looking towards Blackfriars and St.Paul’s

Meet The Surgeon – Friday 8th March 2019 – a visit to St.Thomas’ to see the upper GI surgeon. A surprisingly lovely day and a chance to do some serious walking  along the South Bank of the River Thames.

Last time I saw him we discussed removing my gallbladder and had agreed to put it on hold until absolutely necessary. I had asked for this new appointment to discuss the pain I’ve been experiencing in my right hand side. I wondered if it was connected to my gallbladder (or scar tissue; or Crohns inflammation; or something else). He had a good prod around and was able to pinpoint the exact centre of the ache. (I knew he had found it as when he applied a fair degree of pressure, it hurt)

You have a small hernia. Usually we would offer you a short operation to repair it but given your history I doubt whether we should consider it“. The history he was referring to was the growth of new blood vessels in my abdomen due to PVT (Portal Vein Thrombosis). The vessels grew to relieve the pressure caused by the blocked portal vein.

I could now understand and visualise the pain. So much easier to deal with. Should I change my lifestyle? “No, carry on as before but if it gets worse then we will have to revisit the situation. You’ve got our contact number”. Should I consider wearing a support belt (as I had done when I had a stoma? “If you feel it helps“.

One Day My Prints Will Come

I mentioned that I had not yet seen the capsule endoscopy report from last November. He called it up on screen. No wonder they were having difficulties printing it. It comprised page after page of stills from the 12 hr video. There was however a summary page and I was surprised to find that it reported active inflammation in the proximal (top end of the) small bowel and a little further down as well. The far end (site of my anastomosis) was clear.

On the train home from London I thought more about why I was surprised and concluded that I really shouldn’t be.  Colonoscopies always showed no inflammation; upper GI endoscopies showed the same.  It was only the elevated calprotectin level that suggested anything was wrong. If that level wasn’t a false positive then the problem had to be somewhere between the duodenum and the terminal ileum. The last small bowel MRI scan had mentioned the possibility of inflammation. Despite this, physically, I felt nothing and still don’t. My digestive system is working as it should.

The Bleeding Clinic – Wednesday 13th March 2019 – off to Guy’s to see the haematologist in the Haemophilia Clinic……but my questions were all to do with general haematology.

My Hb has been consistently low for a while and I’ve been taking Ferrous Fumarate for over 5 years. My GP had then upped my dose to two tablets/day. I thought this was considered to be a short term measure. Would an iron infusion be more effective? The haematologist looked at my last blood test results. He agreed that the Hb was low and so were my white blood cells. Another bone marrow biopsy would be worthwhile to check for any changes since 2013.

I mentioned that there was a proposal that I should start Vedolizumab. Did my pre-existing conditions of thrombocytopenia (low platelets) and PVT (Portal Vein Thrombosis) need be considered? He consulted the online medication “bible” and said that Vedo was gut specific and should not interact with the other conditions.

He would book another appointment with the general Haematology clinic but in the meantime he would get me to provide blood and urine samples. I explained that the IBD Dept. required, and had already requested, specific blood tests. Would it be possible to get these done at the same time? Yes it would and so it was off to see the phlebotomist who removed nine full phials of blood (my previous record being seven).

…then off to visit the new public roof garden before getting lunch

View towards Canary Wharf from the Roof Garden at 120 Fenchurch Street

Next steps – off to see my gastroenterologist on 15th April

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)

Fantastic Voyage

Fantastic Voyage – 1966 Sci-Fi Film

A New One On Me

Over the years I have undergone many different tests but the one that had eluded me to date was the Capsule Endoscopy. Maybe that’s the wrong to put it. Might be better to say that “so far I hadn’t needed one”.

So what changed? The last time I saw my gastro we discussed the apparent conflict between my feeling fit and well (good QOL), clear colonoscopies & biopsies but test results suggesting the opposite – calprotectin = 1300 ; Hb = 11.0 ; gradual weightloss >15kg. We had discussed this before. He had even asked a colleague to carry out a second colonoscopy in case he had missed something. Both of them were stumped so we agreed to park it. I thought now was the time to ask for it to be investigated further. The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and the point where my large and small intestines had been rejoined. He agreed.

We had previously discussed using a self-propelling endoscope but a “pill cam” sounded a less daunting solution. The concern about using a capsule was the risk of it becoming stuck at a narrowing. A radiologist would be asked to review my last MRI scan for strictures before the endoscopy was ordered. The cost of the capsule endoscopy procedure to the NHS is approx. £500.

All must have been well as I got a call from Endoscopy Appointments to agree a suitable date  for the procedure. A couple of days later the instructions arrived in the post. Very similar to having a colonoscopy but with none of the dreaded prep solution needed. The leaflet also listed the medications that would have to be put on hold. These included stopping iron tablets and Loperamide 7 days out. Iron tablets – no problem, but Loperamide – that would be the one instruction I wouldn’t be following. The thought of taking a trip to London having not taken Loperamide for 7 days was not even worth considering and would have put in jeopardy attending the Big Bowel Event at the Barbican on 16th November.

Monday 19th November 2018 – GSTT Endoscopy Department

After the glorious weather over the weekend it was a disappointment to arrive in London on a dull, rainy day.  The walk to the hospital took me past a number of foodstalls that simply reminded me that I hadn’t eaten since 8:30 the previous morning or drunk anything since 22:00.

Food Stall
One of the food stalls that have sprung up along the South Bank

I arrived at St.Thomas’ Hospital and, after a few minutes’ wait, was collected by the specialist nurse. She asked the usual questions :

“When did you last eat?” “8:30 yesterday”

“When did you stop taking iron tablets?” “7 days ago. Why is it so far in advance?” “They blacken the walls of the intestine and can give patients constipation”

I explained that I hadn’t stopped taking Loperamide as, for someone who relies on it every day, any thought of stopping for 7 days was a definite non-starter.

“What other medications are you on”  I went through the list

She outlined the procedure and I was able to ask the questions. The main one was “can the capsule be used to judge the condition of esophageal varices? If it can then should I cancel my conventional Upper GI endoscopy booked for the week before Christmas?”.  She explained that a capsule can be used to look at varices but it would need to be a different type from the one I would be swallowing today.

She then ran through the risks of the procedure. The main one being the capsule becoming stuck and the possible means required to extract it, the worst scenario being surgery. I signed the consent form.

There are several different makes of capsule system available which all work on similar principles. There are also different types of capsule for specific tasks. There is even one with a camera at both ends.

The more advanced ones have higher resolutions & frame rates and some communicate with the recorder unit wirelessly, without the need for sensors. St.Thomas’ employ the MiroCam system which  uses an array of sensors to pick up the signal from the capsule and send it to the recorder. (It’s the same unit that the BBC used for the live endoscopy that they broadcast as part of their “Guts: The Strange and Mysterious World of the Human Stomach” in 2012.)

MiroCam receiver and sensor array

The first task was to attach the numbered sensors in the correct positions around the abdomen. I can see why wireless communication is the future. (I wouldn’t normally post a selfie of my abdomen, in the interests of good taste, but to illustrate…..)

It’s not until you see a photo of your abdomen you realise the marks that have been left by surgery, laparoscopic not keyhole

Once they were in position the nurse produced the capsule and asked me to hold it between my fingers then pass it in front of the recorder unit. A bleep showed that they were now paired. As she had already input my information into the unit the display showed my name, hospital number etc.

The capsule – measuring 25mm long x 11mm dia.

It was time to see how easy swallowing a capsule would be. The answer – very easy. At 11:40 I took one gulp of water and it was on its way. The nurse switched on the live monitoring function and we watched it enter my stomach. To save battery power she then switched it off and I didn’t have the courage to try it myself in case I ruined the whole procedure. (…and what if I had seen something that, to my eyes, looked wrong? A surefire way of inducing stress)

As the unit has a 12 hour battery life she said the unit would switch off at 23:40 and I could then remove the sensors. The recorder unit would then need to be returned to St.Thomas’. I explained I was not available the following day so we agreed that I would take it back on Wednesday. Two weeks later the results should be available. When would I be able to eat and drink again? Coffee two hours after swallowing the camera and then a light meal after another two hours.

If it had been decent weather I would have set off on a long walk around London, as light exercise helps the transit of the capsule, but I decided I would rather get home in the warm. I took a short walk to College Green (the area outside the front of the Houses of Parliament) to see if there was a media scrum due to some new development with Brexit but there wasn’t so jumped on the Tube to Blackfriars and took the train home.

From Platform 1 at Blackfriars there’s a good view of the City and the new buildings going up

True to the nurse’s word the unit switched itself off at precisely 12 hours from the start of the procedure and I was able to peel off the sensors with remarkably little pain. The camera is not retrieved after the procedure (although there are some types that do rely on the patient “collecting” it and returning it  to the hospital for analysis).

Wearing the receiver unit took me back to having a stoma as it was hanging in the same position as the bag and the adhesive on the sensors gave a similar sensation to that of the stoma backplate.

Partial Update

The analysis of the video was due to take 2 weeks from handing the recorder unit back but nothing was forthcoming. I contacted my gastro consultant who said he would chase it up but after 4 weeks still nothing. I knew I would be visiting the Endoscopy Dept. again on 18th December, for my annual Upper GI scope (looking for esophageal varices related to portal vein thrombosis)  so I would ask then.

The endoscopy was being carried out by the head of the Gastro Dept. so I asked him whether he could find my video results on the system. He went off to check the status. By the time he returned I had been prepared for the scope – xylocaine spray (burnt bananas) to back of throat; mouthguard in position; Fentanyl injected. I was unable to speak. Luckily they had held off with the Midazolam so I was, at least, still conscious!

He told me that the video was being checked now but he had seen the first half of it and appeared to show Crohn’s in my small intestine. A nice Christmas present! I would have to await the full analysis before discussing the way forward. I emailed my gastro consultant to tell him the news. He replied that he would keep an eye out for the report.

…and with that the Midazolam was injected….zzzzz

When Will It Be Resolved?

The report took a long time to finally emerge and in another email my gastro said that it did indeed show that Crohn’s had re-surfaced in my small bowel in the form of mild to moderate inflammation. This was a disappointment as I had been in remission since 2011. An appointment has been arranged for 15th April to discuss the treatment options. If feasible I would favour the “do nothing” option. My thoughts on the end of remission and the questions I have for my gastro are in a separate post (opens in a new window) – http://www.wrestlingtheoctopus.com/call-my-bluff/

The Report Finally Arrives

In mid-March a printed copy of the endoscopy report, in glorious living colour, arrived in the post. Whilst I found it fascinating I struggled to understand exactly what the images were showing.

I was intrigued by the transit times : 15 minutes to make it through the stomach; 2 hours 52 minutes travelling through the small bowel; and 8 hours 51 minutes in the colon. These were classed as being “within average range”.

Luckily there was a summary report; unluckily there it was in black and white “…with a background of Crohn’s these are in keeping with mild to moderate active disease“.

Capsule Endoscopy Report – from esophagus to ileo-caecal valve