Category Archives: Crohn’s Disease

What influences your attitude to your health?

Do you think that the job you do influences the attitude you adopt to your health condition(s)?

For the last 35 years, or so, I’ve been planning things. Think party planning but without the sex, drugs and rock’n’roll. To be precise I’ve been planning a whole range of projects ranging from construction jobs, offshore wind farms, defence contracts and the mega Channel Tunnel. The last few years were spent planning the major upgrade to the London Undergound system allowing the introduction of the air-conditioned, walk-through trains on the District, Circle and Metropolitan Lines. (If you use them I hope you enjoy the experience).

 

The job has been challenging, especially when tackling new areas as you need to quickly learn a myriad of acronyms, technical terms and understand the new processes needed to deliver a successful outcome. The standard planning tool is the bar chart, or Gantt chart to give it its fancy name, but the key is always communication. That’s where my love of diagrams comes from. If you can encapsulate on a single page the message you are trying to get across it is so much easier for others to understand than reading reams of words.

 

After many quiet “health” years everything stepped up a gear
in 2010 and over the course of the next 24 months I was faced with multiple outpatient appointments, procedures and a growing number of health conditions. It dawned on me that my health could be considered a “project” and the techniques I had been using for years could be effectively employed to manage it. The follow-up letters or medical reports often contained acronyms or very long, very unfamiliar medical terms and when I obtained copies of all my medical records I reached information overload.

 

The “project” approach (and starting a blog) has enabled me to become very objective about health issues. I see my consultants/NHS as a set of expert resources that will help to achieve a successful outcome. But, of course, there lies a problem. What is a successful outcome? For a conventional project there is a clearly defined point at which it can be declared finished but for a chronic condition, such as Crohn’s, there is at present no end in sight. That makes me uneasy as I’m used to completing a project and then moving on to the next one. (My wife would not agree when it comes to home DIY but that’s just a man thing).

 

Maybe this isn’t just a chronic illness issue but also age related. When you reach a certain point in your life mortality surfaces as an issue. You start to realise that there’s more behind you than in front. If you’re an actuary then you may have already calculated when your use of the term “midlife crisis” is valid. For the rest of us, without access to the actuarial tables, we can only guess and ask our consultants that question that they can’t answer – “is it Crohn’s that will finish me off or is there an even bigger elephant in the room?”

 

Returning to the original question – do you think your job influences your attitude? Maybe I’ve got this completely the wrong way round and the question should be – do you think your attitude to life and your condition influences the job that you do?

Top Trumps

The last blog was triggered by spotting an “I’m grateful for my IBD” post, this one is about another trend I’ve noticed – “Illness Top Trumps” or “my illness/condition is worse than yours”.

It’s played over SoMe, especially on Facebook forums. The “game” usually starts with a post along the lines of “IBS is worse than IBD” or “Ulcerative Colitis is worse than Crohn’s disease”. The ensuing discussions rapidly become very heated, abusive and always completely miss the point that two patients may have been diagnosed with a disease but experience its effects in vastly different ways. It’s QOL (Quality of Life) that matters. How much does the condition prevent you from living a “normal” life? Has it caused you any psychological issues?

The diversity of paths that each of us travels was made clear recently with the Twitter hashtag #MyIBDHistory. A friend of mine (and soon to be fellow blogger – @bottomline_ibd) had this great idea (whilst idly daydreaming on a roasting hot afternoon) – could she condense her IBD history into just one tweet of 280 characters? Having succeeded she decided to release it on Twitter as the “#MyIBDHistory Tag Challenge”. Over 1,000,000 impressions later it has really taken off and resulted in many IBDers taking the challenge and posting their potted history.

The histories make fascinating reading and it’s very humbling when you realise just what some of the respondees have gone through, or are in the process of going through, under the catch-all umbrella of IBD. Each person has presented their story in a slightly different style and what has beem particularly gratifying is that the responses from others have been very supportive without a hint of oneupmanship.

There have also been positive reactions from HCPs who have also found the Tweets inspirational and informative. If you get a chance they are well worth a look. Personally I realised that despite having Crohn’s Disease for many years I have escaped lightly and for many years my QOL has been virtually unaffected.

There is another variation on Top Trumps based around “what I’ve got is so unusual that I’m very special”. These do not usually descend into conflict as who wants to argue with a special one?  (unless it’s Jose Mourinho). There’s a corollary to this – EIMs (Extraintestinal Manifestations). These may potentially have a far worse effect on QOL than the original disease. An EIM, taken in isolation, may be a relatively common issue but many patients will suffer from more, sometimes many more, than one EIM. By looking at their WHP (Whole Health Picture) the combination of multiple EIMs, together with the original disease, may add up to them also being “special”. If you would like to see an example then visit this link – http://www.wrestlingtheoctopus.com/the-jigsaw-diagram.

Confession time –  I have to admit that I’m not squeaky clean when it comes to oneupmanship. I have mentioned my surgery from 2010 many times (what do you expect from a Crohn’s patient blog) but haven’t been able to stop myself from quoting the surgeon who said it was “one of the most complex operations” that they had ever undertaken. There, I’ve done it again. I’ve tried analysing why I feel the need to mention this piece of information and why it is one of the few aspects of Crohn’s that makes me emotional. At first I thought it was a case of Surgical Top Trumps – “my operation was more difficult than your operation” but I’ve thought about it very long and hard and concluded it’s my sheer awe and surprise that a body and mind, my body and mind, could undergo such an ordeal, come out the other side, survive and thrive.

 

Grateful?

Every so often a post or podcast appears along the lines of “Why I’m grateful for my IBD” and every time I see those words I wince a little. Am I swimming against the tide? Am I the odd one out here? There is not one aspect of this disease (or its EIMs) for which I have any sense of gratitude.  I’m not doubting  those who are “grateful”. I can understand that,  just like IBD itself,  there are many “flavours” of coping mechanism and if it works for them then fine.

I’m not denying that I have met some fantastic people from the IBD Community, both online and in person, but then I’ve also done the same through work and hobbies….and I haven’t needed IBD to give my life direction, focus or convince myself I have staying power.

Having said I’m not at all grateful I quickly need to counter that by saying neither am I resentful or regretful. The worse thing I could do is get into an “if only” mindset ie. “if only I didn’t have IBD I could have….”. I have thought long and hard about this subject and made my peace. I can’t think of many things worse for one’s health/mental health than living a life of regrets.

Have I always taken this attitude? The honest answer is “I don’t know. I can’t remember“. My medical memory was reset around 2009 and before that I can recall very little. I have now managed to fill in the physical events with the help of a medical records, photo library and my wife’s amazing memory for dates. I cannot do the same for my emotions or feelings apart from knowing I was sh*t scared of going under the knife but I don’t think I had any bitterness at having Crohn’s.

When surgery became inevitable in 2009 my emotions could have gone in one of two directions. I  would have understood if i had become very anxious, given my attitude to surgery, but instead I went into a very relaxed, laid back mode. I’ve manage to maintain it ever since. Clearly a prolonged period of remission has helped but a couple of serious EIMs could have derailed it.

IBD has certainly taught me a lot both about the disease itself and ways of living a relatively normal life despite of the everyday issues that it raises….but “grateful”? Definitely not.

The Red Stuff

Friday 12th November 2010

At about a quarter past six I noticed that I appeared to be losing blood. I went off to the bathroom to investigate and found that he contents of my pouch had turned bright red. My immediate thought was that something had come apart internally and that I needed to get urgent medical attention. The level in the pouch was visibly increasing but not filling so fast that I would need to change it for a while.

My wife was already outside feeding the ponies so I went to explain to her and told her that I had a problem. I needed to get to hospital quickly. Knowing it was a Friday night and that A&E (Accident and Emergency) was likely to be busy we decided to call 999 rather than trying to organise a lift down there. I rang our neighbour to warn her what was happening and ask her to come and let the dogs out and give the ponies their late night haynets. We had no idea how long I’d be down at the hospital.

The ambulance turned up very quickly. Seven minutes from call to arrival. Once onboard the crew went through a series of tests and then we were off. No siren or blue lights. It wasn’t a very good ride in the back of the ambulance as they sway a lot and the country lanes around where we live are very twisty.

We arrived at East Surrey Hospital A&E at just after 7:15pm. One of the crew said: “we’re taking you into the Rapid Assessment Unit but don’t be fooled by the title”. His scepticism was unfounded and within 10 minutes I was laying on a bed having more tests and a cannula being inserted into my arm. I was then taken to the MAU (Medical Assessment Unit) but they were full so we had to wait in the corridor. This was probably the worst part of the experience because you couldn’t see what progress was being made in clearing the queue. I’m not sure what time I was actually wheeled into the Unit but it was probably around half past nine.

I was seen by one of the doctors and we went through my medical history and I explained what the current problem was. I got the distinct feeling that he wasn’t keen to explore my stoma himself and didn’t even suggest that we remove the bag to get a better look at it. He went off to ring one of the surgeons to see what should be done. At this point a friendly porter appeared to take me down for chest and abdominal x-rays. He remarked how busy they were and that it hadn’t been this bad since July. Surprisingly enough Friday and Saturday are not usually their busiest nights.

With the x-rays complete I was wheeled back to the MAU and it looked like I had missed my place in the queue. I was told that the plan was for me to be taken to the SAU (Surgical Assessment Unit). In the meantime the doctor came back and said that he needed to take an arterial blood sample which would probably take a couple of goes and would be very painful! Thanks for the warning. I needn’t have worried as he hit the artery first time and I had become very used to having needles, of varying lengths, stuck in me.

Rather than call for another porter the sister wheeled me down to the SAU herself. I was told that the doctor knew I was there and would be along to see me. It was now about 11:00pm and I’d still not seen anybody so my wife went to find out what was going on. The doctor was seeing another patient but would be with me shortly. A few minutes later she appeared and apologised that it would be necessary to ask me all the questions again. I had remembered to bring a copy of the discharge letter from St.Thomas’ which explained what the surgeon had done. As we had been unable to understand it completely, due to the long, medical terms, the doctor gave us a translation.

As she specialised in surgical cases she had no fear of removing the pouch. She then examined my stoma, inside and out, and came to the conclusion that the bleeding was external but I was right to have come down to the hospital. I asked her if she was considering giving me a blood transfusion but she said that unless my blood count was getting worse she was happy for me to be discharged. She did give me the option of staying in overnight if I was concerned but I decided that I would be OK. Other patients needs would be far greater than mine.

There was a short wait whilst the nurse removed the cannula and then I could get dressed. I rang my sister who very kindly came out and picked us up. We were home just gone one o’clock. Not what we had planned for our Friday evening. I was famished as I hadn’t eaten or drunk anything since 5:30pm. I grabbed some toast and a coffee and then went to sleep sitting up on the sofa.

What went wrong

When I saw the stoma nurse the following day she gave me a thorough examination and announced that I had developed an abscess below the stoma which I had not been able to see. The abscess had burst but “luckily” the blood had made its way into the pouch not my clothing.

…and another thing

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

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

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

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

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

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

A few daysafter starting….

The finished job

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

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

One of the surgeons very kindly drew this diagram for me

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

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

 

The Difficult Patient

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

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

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

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

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

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

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

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

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

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

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

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

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

IBD Knowledge and Curiosity

They say with age comes wisdom. I fear I am the exception to that rule. What doesn’t come with age is knowledge. I proved this by spending the first 20 years from my Crohn’s diagnosis knowing very little about the condition. You could sum it up as : nobody knows what causes it; it’s incurable; you take steroids to keep it under control and get on with life; not many people have heard of it.

In 1998 there was the first mention of possible surgery to remove a stricture. I now needed to know what “stricture” meant and its implications. I started to take a little more interest but once I was safely weaned onto an immunosuppressant, and back to some sort of equilibrium, then my interest waned and life quickly returned to “normal”.

Another decade passed and then a routine blood test showed my platelets were dropping. As this was a known side effect of the immunosuppressants they were stopped.

In May 2009 a CT scan painted a complicated picture of both ileal disease and the suspicion that I was fistulating into other parts of the small bowel, possibly the sigmoid. My consultant put it in simple terms: “It looks like you’ve got an octopus in there”.

Fistula? I had no idea what that meant. It certainly sounded somewhat unsavoury. I started, again, to resign myself to surgery. After a brief, expensive, unsuccessful flirtation with Infliximab, the knife became inevitable.

As it approached I was confronted with new medical terms and there would be new skills to learn, for instance changing a stoma bag, but the knowledge I sought was still confined to my immediate needs.

Some of the basic information, that I’m assuming (hoping) newly Dx’d patients nowadays take for granted, had sadly passed me by. It wasn’t until 2012 that this was remedied by a couple of things, the first being my increased awareness of SoMe which lead to reading other patient’s stories. The second started a little more dramatically.

In mid-2012 I was rushed into our local hospital leaking upper GI blood. Once stabilised, given my history of Crohn’s, I was placed on the gastro ward. It was an eye opener. There were patients there who had admitted themselves as they were having a flare-up! Really? That was new to me. I had never even considered doing that. Could things really get that bad?

I became reacquainted with my old IBD Nurse who, sadly, had returned to being “just” a ward sister as she wanted to reclaim her private life. One quiet afternoon she sat on the end of my bed and we started chatting about Crohn’s disease.

She was surprised at my lack of knowledge and quickly realised that nobody had ever talked me through the basics. It was assumed that someone who had experienced the condition for so long must know all about it by now. I was guilty of this assumption myself as I knew no better. Our conversation was a wake up call to become better informed. Now my curiosity was awakened.

Six years on my curiosity is stronger than ever but I’ve hit a bit of a brick wall. It’s been the subject of previous posts and many, probably too many, Tweets. Although I’ve been in remission for several years I still undergo regular monitoring and this is where the problem lies. As usual I’ve drawn a diagram that represents my take on the situation..My case has been discussed at the Multi Disciplinary Meeting of one of the country’s leading gastro teams and the conclusions were : the colonoscopy findings outweigh the MRI findings in the colon. The small bowel was reassuringly uninflamed. There is no explanation for the raised calprotectin in terms of Crohn’s disease. Watch and wait.

From a health point of view I’m happy to “watch and wait” but my curiosity is sufficiently piqued that I would like find a logical explanation. It’s difficult to know what to do next. I’m rather hoping that by putting the details of my case out into the big world of SoMe it might just strike a chord with somebody – a fellow patient, an HCP or even a testing lab – and they will be able to point me towards a solution. Until then I have a feeling I will be returning to this subject on a regular basis.

 

One Word

…and today’s word is “cauterise” – to burn the skin or flesh of  a wound with a heated instrument in order to stop bleeding or to prevent infection. (No, I’m not going into any gory details but I imagine the odour would be similar to one of our neighbour’s BBQs)

A few months back I was half-listening to the radio when on came Vince Cable, leader of the Liberal Democrats, to talk about his autobiography “Free Radical: Memoirs” (published by Atlantic Books). He referred to an episode in his life as having “cauterised” his emotions. That word struck home. It summed up exctly how I felt after my father’s sudden, unexpected death. I was just 14. I did not want sympathy. I would cope on my own and as a result became very cold, detached, emotionless.

I’ve often wondered if this may have “helped” me to manage all that Crohn’s disease has thrown my way. Has it affected my attitude to those little setbacks and life in general? I’ll let others make that judgement but I have been accused of being very cynical, possessing a dark sense of humour and being positively laid back (so much so that it induces the opposite effect in others).

A few days ago I was having a discussion, with a fellow patient, about IBD nurses, the pyschological support available and the potential differences between the requirements of male and female patients. She was surprised that it has been eight years since I had met with an IBD nurse (apart from handing in calpro samples and a short, non-IBD related stay in hospital). I certainly don’t feel that I am supported by a whole IBD team, but that is down to my personal circumstances – long term remission. It was different when I was an in-patient.

I mentioned that I had never been offered any type of psychological support and never felt emotional at any consultant’s appointments There is, however, one incident in my recent medical history that does affect me deeply. I was going to call it my Achille’s heel but that suggests feeling emotional is a weakness whereas it should be seen as a strength. (Maybe that says more about the environment I was brought up in)

The one thing that affects me?  Reading my account of a meeting with the “guest” surgeon who aided the surgical team with my ileostomy. He had commented how well I looked despite “what they had done to me” and that it was “one of the most complex operations they had carried out” but why does it affect me so much?  (This is how the conversation with the fellow patient (FP) went:

FP: “Why do you feel like you do about the surgeon’s comments – what feelings does it provoke in you. (I’ll be getting out the therapist’s couch next!!)”.

Me: “I have been trying to analyse that myself.  All I can think is :

1) I had underestimated the state my innards were in and just how serious the situation was rapidly becoming.

2) I was relieved my body was capable of withstanding the rigours of the operation and coming out the other side.

3) That this seasoned professional was surprised at the reaction and recovery of my body after such major surgery

4) Was I partly responsible for achieving the good recovery because of my state of mind in the run up and aftermath of the operation?

Phew! Hadn’t thought about it that deeply before. Can I get off of the couch yet?”

FP: “Much to reply on that.  Stay on that couch!!

I can relate to what you’re saying about cauterised emotions, my own belief is that it’s just a coping mechanism to get through some truly awful times and that it becomes a type of shell to protect us from similar situations in future. There is something too that is slightly euphoric when we do well, partly as a straightforward relief that we are still alive but also because we realise we perhaps have more say in our health than we previously thought (presumably a reason people vow to look after themselves REALLY well after making it through an operation etc, though the reality is that real life and its bad habits kick in again before too long for a lot of people). I believe that patients who are able to channel their anxieties and low energies into something positive – or even a distraction – do well.

You genuinely appear to be able to live a life outside of your diagnosis. I do think that bodes well and is one of the reasons I am pleased to have crossed paths with you.”

Me: “Thank you for your excellent analysis Doctor.”

FP: “My pleasure. Invoice is in the post.”

Drifting into the realms of “what-if”, which I have previously stated is a bad idea, there is a theory that links the start of Crohn’s/IBD with a traumatic event in one’s life. COuld my father’s death have been that trigger?  How long can it take between cause and effect? Any thoughts?

Getting Involved in Research

How I Became Involved in Research

June 2018 will see the 40th anniversary of my diagnosis with Crohn’s Disease (although the symptoms had been apparent since the previous Autumn). Apart from early surgery, for a perforated bowel, I spent the next 30 years clear of any major flare-ups and was not greatly affected by the disease.

That all changed in 2009 when the drugs stopped working and surgery beckoned. A year later I underwent an ileostomy at St.Thomas’ Hospital (subsequently reversed). The whole experience was life changing. At that point I started to become aware of social media and the active IBD communities out there on the web. I learnt much more about IBD and read about other patient’s experiences.

After surgery in 2010 I went into remission although a number of other conditions appeared. I was keen to understand what caused them and if anything in my medical history would point to their origins. I started to read research papers on these conditions and re-visit old medical records.

I had already contributed to research by donating blood and tissue samples from my ileostomy and had taken part in a genetics study but, having been in remission since 2011, the other studies I came across needed patients with active disease. That didn’t stop me from helping but it was now from the other side of the fence. I reviewed questionnaires and information sheets for research studies to make sure they were “patient friendly”.

In 2017 I took early retirement which gave me the opportunity to devote more time to helping the IBD cause. Towards the end of last year I was asked by a fellow Crohn’s patient whether I would be interested in helping Bowel & Cancer Research. After an initial meeting I realised this was an environment I could contribute to and I have subsequently become the Public and Patient Involvement Lead (PPI) for the Motilent study, using enhanced processing of MRI scans for the management of, initially, Crohn’s Disease. Crohn’s was chosen as small bowel MRIs are commonly used to monitor the disease and it has a significant patient base.

(The National Institute for Health Research (NIHR) defines public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.”)

I happened to mention that I had carried out a very simplistic calculation of the time I had lost during the last 10 years due to Crohns’ and related issues (including attending outpatient appointments, undergoing procedures or sitting in a hospital bed as an in-patient). The diagram below illustrates that the period mid-2012/13 was particularly intense. The time lost equated to just under 8%. The project team liked the idea of preparing a properly researched study into the cost burdens experienced by patients and so the “Costing Crohn’s” study was born. Luckily several team members are experienced in organising such studies and the requirements for producing a document that can undergo peer review. It was time to learn from the experts!

The first step was to recruit a small working group of patients to review the approach we are proposing to take and suggest the areas we need to consider. We held our first meeting at Bowel & Cancer Research HQ in February.

As a precursor to the meeting I produced the diagram below based on my own, personal experience. It gave us a starting point for our discussion. By the end of the session the diagram had grown many more branches! A big thanks to our participants.

Our next step is to put together the first questionnaire for Crohn’s patients to complete. We’ve taken the decision to produce a series of short questionnaires rather than one long one. The first one will be on the subject of the procedures respondees have undergone in the last 12 months.

The results of our study will be enhanced by the number of responses we can get back. Please look out, later ths year, for links to the “Costing Crohn’s” study on Facebook, Twitter and other social media platforms. We will be needing you help.

Twitter account – @costingcrohns #costingcrohns

 

Meeting People

THAT WAS THEN….

Up until 2010 I had only ever met 2 other people with Crohn’s Disease – a work colleague in 1992 and a neighbour a couple of years later. I had deliberately avoided joining any patient groups. Why would I want to go out of my way to mix with a load of “sick people”?

After initial surgery I had spent long periods in remission and never had a flare-up bad enough to be hospitalised. My only contact with Planet IBD was when I saw a consultant, sometimes six monthly, yearly or longer. My only knowledge of what it was like to live with Crohn’s was from personal experience.

Then in 2010, with surgery beckoning, I started using SoMe and suddenly I found the online IBD Community and “met” lots of Crohn’s patients, albeit in cyberspace. I then went on to meet a couple of them for a coffee.

….BUT THIS IS NOW

I recently had the privilege of taking part in a patient workshop. So what happens when a small group of Crohn’s patients get together, not virtually, but sitting round a table to discuss the cost of the disease to the patient? (and not forgetting the valuable contribution of one patient on speaker phone)? A number of things :

The barriers and taboos of “normal” conversation go out of the window. No subject is off limits. Any embarrassment disappears.

It quickly becomes obvious that whilst we share many of the same experiences, we all have a unique take on the disease and the way we cope with it.

The atmosphere is one of empathy and not judgement.

My overriding thought, having listened to everyone’s story, was what an amazing thing the human body is. The pain and heartache it can inflict upon us but also its ability to survive against all the odds. Even more remarkable is the human spirit and how it copes with a failing body and the mental anguish that a chronic disease can bring with it.

I also learnt some very specific things such as what a Hickman line is or why some patients have a Portacath or what it is like trying to claim support payments.

At the end of the workshop one of the non-Crohn’s participants said that until you do this sort of exercise you cannot understand how all encompassing living with Crohn’s is or, for that matter, any chronic disease.

I’m looking forward to the follow-up workshop later in the year.

…as an added bonus we were given a guided tour around the Bowel & Cancer Research laboratories by one of their very enthusiastic pharmacologists who explained some of the research projects underway

Bowel & Cancer Research Laboratory
Tissue samples undergoing tests