Living with a timebomb

I’m not trying to scare anyone with this story. It is very unlikely you will experience the same but it is worth being aware of yet another part of the rich tapestry that Crohn’s Disease can weave for us.

This is what happened…..

Monday 28th May 2012 – Outpatient Appointment at Guy’s.

The original intention was to go into work as usual then catch the Tube down to London Bridge in time for my 10 o’clock appointment. I wasn’t feeling so good so decided to catch a later train and go direct to the hospital. I’m used to an early start with virtually no traffic so rather underestimated how long it would take to get to Redhill station from home. By the time I got to the station I could hear the train pulling into the platform. I didn’t realise that it would wait there 5 minutes before leaving so I tried to run and realised just how bad I felt. My chest started heaving and my heart pumping. I really thought I was having a heart attack. Once I was on the train I managed to take some deep breaths and gradually return to some type of normality.

I made my way to the Outpatients Dept. in time for my appointment but then had a long wait before seeing my consultant. When I was finally called in I was relieved to find that I was seeing the top man, not one of the registrars. He did apologise for the long wait.

We went through my list of queries and eventually discussed  the issue I was having with passing a jet black liquid from my back end. He asked me to get a sample for analysis which I thought would be easy but no luck. He also asked me to make an appointment to repeat the colonoscopy to verify the results of the MRI scan.

Eventually I was on my way home and by now the temperature was high. I bought a bottle of cold drink and then boarded the train back to Redhill. By the time I got home I was feeling pretty exhausted and went to have a lie down to recover. Around six o’clock I started to feel sick so disappeared into the toilet and then it happened… (don’t read any further if you are squeamish)

I brought up a large amount of what looked like redcurrant jelly but was clearly freshly congealed blood. I must have gone into shock for a few minutes, thinking “What do I do now?” (Not like me at all. I usually come quickly to terms with what is happening, decide the best actions to take and get on with it but this was like nothing I had experienced before and for a while I couldn’t cope).

I came to the conclusion that this was definitely a 999 moment. I heard my wife coming back from feeding our ponies so called out to her to ring the number. She made the call and then responded to the long series of questions that you now get asked by the operator. The decision to send an ambulance was made and my wife then hurried herself to get together some things into a bag before the ambulance pulled up our sideway. She didn’t quite finish as the ambulance arrived incredibly quickly. When she opened the door she recognised the paramedics as the ones who had taken me into hospital the last time we had reason to call 999 (see “Post Op – Back Home” page – 12th November). They came in to see what state I was in, took one look at the blood surrounding me and, to put me at ease, told me that it was only a small amount!

I was loaded into the ambulance and then went through various tests before we set off. They were obviously concerned at my state and said that my blood pressure was very low. They put me on a drip and the driver said “I think we’ll go for the siren”…….

A few minutes later we arrived at East Surrey Hospital and I was taken straight into the Accident and Emergency assessment area and was immediately seen by a doctor to make sure I was stable. Over the next hour or so I was seen by a couple more doctors whilst they decided the best ward for me to be sent to. Their decision was to admit me to the Medical Assessment Unit where I underwent further assessment. By this time my sister had turned up to take my wife home so we said our goodbyes and I waited to see where I would end up.

My wife returned home and had to clear up the blood from the floor. I’m so lucky to have someone so tough to support me when things are going wrong.

The decision was taken to send me to the ward which specialises in gastroenterology and I was duly taken to this new ward. I then saw the doctor on duty who made sure I was comfortable and worked out what drips I needed to be on.

Tuesday 29th May 2012 – the rest of the night was spent undergoing regular checks on my blood pressure and temperature. I didn’t get much sleep but was just happy to be in the best place, given the condition I was in.

During the day I saw various doctors who were trying to decide which tests I should undergo. The immediate priority was to have an endoscopy (camera down throat) to see where the blood had come from. They tried to get me onto that day’s list and so I wasn’t allowed to eat anything. Unfortunately an emergency case took priority and at six o’clock I was told that I could eat some supper. Apparently the doctor was very surprised at how calmly I took the fact that I wouldn’t be having the test done that day and said she wouldn’t have been so laid back.

They decided that I needed to have a blood transfusion as my blood count had fallen to 6.6. The normal figure for a man is around 14. I therefore had two drips going into the cannula in my left arm.

Wednesday 30th May 2012 to Monday 4th June  – The blood transfusion had brought my blood count up to 8.6, still very low. Over the next few days I had the upper GI endoscopy. I think the doctors were expecting it to show that I had an ulcer, which had burst, or that the Crohn’s inflammation had spread into my stomach. What they actually found were esophageal varices, prominent veins in the lower third of the esophagus and usually related to alcoholism! I looked them up on the internet and found that there is a possible link between them and the Azathioprine drug that I had been on for seven years.

The next step was therefore to have an ultrasound scan to look at my liver as sometimes damage to one of the large veins could route the blood supply into the esophagus causing the varices. I asked what the outcome of this test was and it sounded like nothing particularly untoward showed up apart from a gall stone and a slightly enlarged spleen. I would ask again later, just to make sure I got that right.

The whole ward then went into a sort of 4 day limbo as it was the extended holiday weekend to mark the Queen’s Diamond Jubilee. The number of doctors was greatly reduced and were only seeing patients by exception. I resigned myself to not progressing any further with an explanation of my problem until the following Tuesday.

The phlebotomists did their usual rounds every day and I later found out that my blood count had dropped to 8.0 from 8.6. Not good and would prolong my stay in hospital. The ward sister said that the doctors would be doing a proper ward round on the following Tuesday so I had plenty of time to get a list of questions together. I resigned myself to not progressing any further with an explanation of my problem until then.

Tuesday 5th June 2012 – I knew at some point I would encounter the consultant that I had emailed around a year ago saying that, basically, I was now being treated by St.Thomas’ so not to bother to make any further appointments for me. I had a very good reason for doing this and it is recorded in my book (when it finally gets published).

I’m not going to go into all the details of this encounter but suffice to say that initially he would not look me in the eye and my decision, a year ago, was clearly still bugging him. I reiterated my original reason for leaving his care and this may not have helped the situation. (My decision to move to St.Thomas’ was not taken lightly as it is far easier for me to get to East Surrey Hospital from home, approx. 10 minutes, than it is to get to St.Thomas’). At one point it was suggested that maybe it would be best for me to be put in an ambulance and transported up to London.

I was now in the position that I was under the care of East Surrey for my emergency admission but the long term treatment of Crohn’s was still with St.Thomas’. At the end of a long and detailed discussion on what my current situation was caused by, whilst the junior doctors listened on, we ended up shaking hands and agreeing that we should do what is best for my long term health. Enough said on this matter, let’s move onto possible diagnosis, tests required and best place to have them carried out. So clearly I was not in a position to think about discharge yet.

The recurring terms he used were primary sclerosing cholangitis (PSC) and portal hypertension. He thinks that these are symptoms of a malfunctioning immune system and are also linked to my thrombocytopaenia (low platelet count) and enlarged spleen. I had thought that this last condition had been brought on by the use of Azathioprine but he was sceptical at this.

After the ward round was complete I called one of the junior doctors over and asked how to spell “that primary thing the consultant mentioned” so I could look it up. She replied that it might not be a good idea at present. I decided to park the research for the day but happened to mention it to my sister who immediately looked it up and rang me back. It was all a little scary. Ultimately, if PSC was diagnosed, the long term prognosis – liver transplant! The only way of getting a definite diagnosis would be to carry out a liver biopsy.

With regards to where the tests should be done and the subsequent treatment – I’m not sure what we concluded. I think that we agreed that due to the complex nature of my Crohn’s I would be better remaining under St.Thomas’ as they have more extensive facilities than East Surrey. I wouldrevisit this subject tomorrow on the ward round.

I try to keep a cool head at all times and remain rational so I thought I’d taken the above information in my stride but a little voice at the back of my head kept saying “you’re only keeping calm because you don’t understand the full implications of what you’ve just been told”. When I caught sight of the IBD Nurse I asked her if she could answer some questions, including what were all the long words the consultant were using. She could tell by some of my questions that no one has ever sat down and gone through some of the basic concepts of Crohn’s and its implications.

I got to thinking about this later and she had hit the nail on the head, one of her many skills! (which also includes an encyclopaedic, some might say Wikipedic, knowledge of medical terms and conditions).

No one has ever talked through the bigger Crohn’s picture. For years I thought it was simply an inflammation that caused diarrhea and some pain for which you took steroids. Some years later I ended up with a stricture so I was then aware of another possible complication. The results of the CT scan that I had done three years, or so ago, then introduced me to the concept of fistulas and having to have a stoma. It would be good to be able to spend some time talking this through with a specialist and understanding other possible symptoms and potential effects on other parts of the body. Ultimately I would like to get a clear understanding of the likely effects on my potential life expectancy or quality. I could then use the information to decide when to retire. Maybe I should talk to an actuary.

Back to the ward – it was decided that I should be given another 2 units of blood. Since I hadn’t had any for a week they needed to do another “crossmatch” as they only last 7 days. (All part of ensuring you get the right blood type).

Wednesday 6th June 2012 – that must have been the quietest night so far on the ward. I slept until about 3:00am but then couldn’t get back to sleep until around 7:00am.

The phlebotomist turned up to take more blood samples and she was followed by the registrar and junior doctors on their round. I had quickly made a list of things to ask them – the top question was “plan for escape”.

I was somewhat taken aback when the Registrar said that as long as today’s blood test showed an Hb of over 10 then I could go home. Today! I really wasn’t expecting that. I had told everyone I was in until at least the weekend or possibly would be transferred to St.Thomas’. I’ve now had to wait until around 1 o’clock for my score.

I discussed various things with the Registrar, including going over again what the endoscopy and ultrasound tests had shown. For my long term care they are suggesting that I remain under St.Thomas’ and would be liaising with my specialist there to make sure the necessary test results were passed over. One of the junior doctors was tasked with making this contact.

Thursday 7th June 2012 – back home. My first good night’s sleep for 10 days. Time to take stock. The discharge letter made interesting reading but took a fair amount of translation. The bulk of it listed what they didn’t find so I was rather confused as to what I have actually got wrong with me. The only definite observations were an enlarged spleen and a gallstone.

I read through the leaflets that came with the new drugs. They’d given me – Propanolol – a beta blocker used to prevent stomach bleeding in patients with high blood pressure in their liver or swollen blood vessels in their gullet; and Omeprazole – a proton pump inhibitor to reduce the acid in one’s stomach. Reading through the possible side effects of these two drugs I could end up with insomnia and nightmares. Fingers crossed.

…and since then? – I was put under the care of a liver specialist and underwent a liver biopsy to check for cirrhosis. The result show mild stiffening, something to keep in mind. I now have yearly visits to the endoscopy dept to check out the varices. If they have regrown then the first visit is followed by another two or three when they “obliterate” the veins with rubber bands. Next visit January 2017.

I inevitably turned to the internet. The first page I found, when I searched for PVT and Crohn’s, started with the words “if the patient survives….” Another one said “inevitably fatal”. Not a good start and I was only partly comforted by realising that the articles were written many years ago and by hoping that treatment must have moved on leaps and bounds. If I was to suffer another major bleed from the varices it’s a question of how quick I can get to a hospital and have a transfusion.

It’s like living with a timebomb.

You need an operation

This is an extract from the chapter that covers the immediate period before major surgery for a stricture in my terminal ileum.

Friday, 8th October 2010 – X MARKS THE SPOT

My final visit to St.Thomas’s, as an outpatient, before the operation. I had to visit the stoma nurse in case I ended up having to have a bag fitted. Obviously I was hoping that it wouldn’t happen but you need to cover all the bases. As the saying goes ” Sh*t happens”, and it’s quite relevant in this case!

We started by discussing all the implications of being stoma’d. She told me they were not that difficult to deal with and it should only be for 6 months. She then looked at my physique (= bulges) and how I wore my trousers so she could position the stoma in the optimum place. Once she was happy with the location she marked it. I now had a large black cross on the right side of my abdomen, marked with indelible felt pen and covered by a waterproof sticker. I was still hopeful that it would be intact after the operation.

X marks the spot
X marks the spot

I told the nurse that I intended to keep my blog going whilst I was in hospital. She looked rather sceptically at me and said that for the first few days I would have an attention span of about 5 minutes and it was unlikely that I would feel like doing anything. She was partly right.

I asked what time my operation was likely to start. Surgery usually began at 8:00am but until they saw the full list of operations they wouldn’t be able to tell me where I would be in the sequence. They might have a better idea when I was admitted on the Sunday. When we saw the Enhanced Recovery Nurse the previous week she said that the surgeon likes to do his “interesting” patients early morning and that I was one of the “interesting” ones. It brought to mind the Chinese saying/curse “May you live in interesting times”.

From then on it was just a waiting game until Sunday when I would get the call telling me which ward I needed to report to.

Saturday, 9th October 2010 – LAST DAY OF FREEDOM

The last full day of being able to drive for at least six weeks so we decided to go out for the afternoon to see the autumn tints at the National Trust’s Sheffield Park Garden.

In the evening I made a final list of chores that needed to be completed the following day before I got the call from St.Thomas’s telling me which ward to report to and when they wanted me. I decided to see just how far down the list I could get. I was under strict instructions not to leave home until the hospital had rung but had been assured that they would find me a bed and that the op would go ahead on Monday unless the surgeon fell off his bike again. Since he had done that last year they were hoping he had learned his lesson.


Sunday, 10th October 2010 – THE WAITING GAME

I always knew that this day would be the worst in the process so far. The admission letter told me not to leave home until the hospital had contacted me with the name of the ward I was to report to and at what time.

All the chores were completed in the morning and then we waited for the call. It got to half past two and the tension was just too great so I rang the ward I thought I was being admitted to. Rather worryingly I was told that they had no record of me but would do some ringing around and let me know what was happening.

About 10 minutes later I got a call to say that there wasn’t an available bed in Page Ward but I would be expected in Howard Ward instead. They would call me back to confirm when I was needed. We had a quick look at the St.Thomas’s website and couldn’t see Howard Ward listed. More worry.

I then got a call from Howard Ward to say that I could come in as soon as I was ready and that I was getting a single room in the Private wing of the hospital but not to get too comfortable as it was for one night only.

This really was the most stressful time for myself and my wife but as soon as we set off for London I relaxed and then became positively chilled out. Unfortunately it wasn’t so easy for my wife. If anything my laid back attitude made those around me more anxious.

Private Room
My private room – one night only

My sister picked us up and took us down to the station and we all boarded the train to Waterloo. We walked up from the station to St.Thomas’ and arrived just after half past four. Howard Ward is on the twelfth (top) floor of the hospital and entrance is via a set of locked doors. It took a while to find someone to let us in and eventually were greeted by a friendly ward sister who showed us to my room. The first impression was “Wow, what a view” as we looked south down the Thames and over to the Houses of Parliament.

Just before six o’clock I said my goodbyes to my wife and sister, wondering, at the back of my mind, if that would be the last time I would see them. I don’t want to sound over dramatic but it was a possibility. Apart from that one doubt I was remarkably calm and collected (and have been so ever since, no matter what my health has thrown at me. I wish I could pass the secret on to others but it simply happened and not as the result of a conscious effort).

The ward sister returned to check my details, blood pressure and heart rate and take some MRSA swabs. Then we were joined by a doctor who stuck a cannula in the back of my hand and took some blood samples. I was allowed to eat up until midnight but after that it was to be fluids only. My dinner arrived and I ate it whilst watching the river traffic passing up and down the Thames. Mainly pleasure boats packed with people for an evening cruise, taking advantage of the autumn sunshine.

Howard Ward
Ready for dinner

When I had finished my dinner I was connected up to a drip and told to expect another visit from a doctor around 11:00pm.

Once you’ve been operated on they like to get you down into the main surgical wards as there are more staff around to keep an eye on you. I still didn’t know what time the operation would be and wouldn’t be able to find out until the surgeon arrived in the morning.

I took the opportunity to spend the next few minutes chilling out, watching the sun set over the River Thames. The next update to my blog would be after the operation. It would probably be at least Tuesday before I would be in a fit state to type further entries.

Into the unknown……..but what a view.

Thames - Upstream from Howard Ward
The view from Howard Ward – looking upstream towards Battersea

Monday, 11th October 2010 – PRE OP

I was amazed that I managed to get some sleep. I was woken up at 2:00am by one of the nurses to connect a new drip and then went back to sleep. The next time I woke it was a glorious autumn morning. One of the house doctors came in, introduced himself and explained I was the last on the list for surgery as I was the most “interesting” and they didn’t know how long the operation would take. He answered any questions I had and then went off to the operating theatre. I was given DVT stockings and a surgical gown to put on. I lay on the bed watching the sun rise over Millbank.

It's a beautiful day
The sun rising over the old part of St.Thomas’

I was then visited by the anaesthetist. He said that it looked like I would be going down to theatre at 11:00am and it could be a 5 hour operation. There were some formalities that he needed to run through which revolved around risks and consent forms. He explained that they intended to use an epidural for pain control. Whilst this had proved very effective there were a number of risks involved. He went through each one in turn and gave me the probability of each occurring. At the end of it I signed a consent form that confirmed I understood the risks and I was prepared to go ahead with the operation.

Old Dog, New Tricks

A post because of Crohn’s, not about it.

Whatever else you can say about Crohn’s Disease it certainly does give you the chance of new experiences, mostly unpleasant, to be honest. I won’t list the nasty ones here as they are covered in the video at the end of this post. I thought I’d record how I dealt with this opportunity in case others get a similar chance to raise awareness of IBD.

It’s something I’d wanted to do for a while. I suppose it stems from a reawakening of the “performing” instinct that first showed itself when I was  in a band. That was around the time I was diagnosed with Crohn’s.

mav_lak_2In this instance I really wasn’t sure what to expect. A fellow patient at St. Thomas’ Hospital was due to talk to some undergraduate nurses, about “Living with IBD”, but then found that they were double booked that day. Would I step in and do it instead? Of course I would, after all how difficult would it be to talk to a few nurses? The date was set for 5 weeks time.

I wouldn’t need any preparation. I’d lived with IBD long enough to write a book. I would just turn up and talk, or so I thought. The last thing I wanted was to read from a script but, after some more thinking, decided the least I should list out all the topics that needed discussing.

Years ago I dismissed mind maps as more “management clap trap” and then actually drew one and have been sold on them ever since. It would help clarify my thinking. Here’s what I came up with :

mind_mapAt this point  I found out that there would be around 200 nurses, in a proper lecture theatre and  I would be talking at the end of the afternoon. It dawned on me that to do the subject justice, and not short change the nurses, I would at least need some notes and something to keep everyone awake. I tried doing a run through, just using notes, and it was terrible – stilted, hesitant, repetitive…..  I would have to write the talk out word-for-word, the very thing I didn’t want to do.

I find that simply reading through what I have written doesn’t pick up  over used words or even ones that are missing. Much better to hear it being read. I found that the software I use has the facility to convert the text to speech and save it as an audio file in iTunes. I can then listen to it on my iPod.

After several iterations, including two read throughs to my wife, I was finally happy with the contents. Maybe if I then listened to it endlessly it would become engrained in my memory and I would not need notes.

After half-a-dozen listenings it hadn’t worked. I would have to work from a script after all…..

When I got to the theatre, with a real live audience, it suddenly became a lot easier. I did use the notes but just to make sure I didn’t forget anything (which I still did). I had taken a small camera with me but unfortunately didn’t get there in time to set it up properly so the sound wasn’t brilliant.

The resulting video was rather long, all in one go, so I’ve split it into three parts. Of the three I think that the second one covering surgery and stomas is the most representative. I’ll let you judge the result.

Kings College Hospital, Lecture Theatre

A little further down the road?

5th September 2016 – Gastro Appointment – Guy’s Hospital – 10:20am

…the story so far can be found in the post “Crying Wolf”

Today’s appointment was to get the results of the MRI scan I had five weeks, or so, ago and then work out the way forward to get my health back on track.

It was the first appointment following my retirement so no chance to just leave the office for an hour to attend. It would need a special trip and chance to suffer the reduced timetable operated by Southern Rail. Having left home in plenty of time I arrived at Guy’s only two minutes before the due time. Almost immediately my name was called for me to be weighted. I had lost around 6 kilos since my last appointment. I asked the nurse to put a note on my records that I wanted to see my usual doctor. “No problem”.

Being weighed allows you into the inner sanctum, the inner waiting area, from where you are collected by your consultant. A student approached me and asked if I would be prepared to take part in some genetics based IBD research. I’m always more than happy to help so he left me a document to read and would talk to me after I had seen the consultant.

The waiting area was remarkably quiet. It’s been jam packed on previous visits and I’ve waited over an hour to be called. I’ve been preparing to give a talk on “Living with IBD” as part of a lecture for undergraduate nurses on chronic conditions. I had intended to do it completely off the cuff but I have come to the conclusion that is unrealistic. I’ve written out what I want to stay and the software has then converted it to speech so that I can listen to it on my iPod. This seemed like a good time to give it another listen.

I was miles away, submerged in the narrative about weight loss and fatigue in IBD, and then realised my name was being called. It was my consultant. I apologised for appearing to be on another planet and we made our way into the consulting room. By now it was 10:50am.

I had my obligatory list of questions with me :

  1. Results of colonoscopy 13th July 2016 – “ongoing mild colonic Crohn’s Disease. Previous colonoscopy” – 25th February 2015 – “mild, patchy erythema throughout the colon, however no ulceration seen”. Has there been a change? Does it need to be treated?
  1. Results of MRI scan?
  1. BAM – could this be causing weight loss etc. Treatment – Questran (low tolerance) Colesevelam.
  1. Blood test organised for 2 weeks. Have asked for cholesterol to be checked

Starting with the 1) it did suggest that the Crohn’s has returned albeit mildly. I mentioned that my last calprotectin level had been elevated – around 425. He called up all my results and drew a graph which showed that the last result did not follow the trend. “Collect a sample pot on your way out and we’ll re-run the test in case that was a rogue value. Let me know when you drop the sample in so that I can keep an eye out for the result.”

I asked about potential drugs to treat the inflammation. (Usually I would have been kept on a maintenance dose of Azathioprine but the onset of thrombocytopenia back in 2008 had made this a non-starter). He explained that there were drugs that specifically targetted the colon that were used to treat ulcerative colitis. He mentioned a form of Budesonide. I have subsequently looked this up and found a NICE document about Budesonide multi-matrix (MMX/Cortiment). It is formulated to release at a controlled rate throughout the colon to minimise systemic absorption. The licensed dose is 9 mg in the morning, for up to 8 weeks. It was licensed in October 2014 for inducing remission in mild to moderate active ulcerative colitis in adults for whom aminosalicylate treatment is not sufficient.

2) What did the MRI scan show? Strictures in my colon but they hadn’t shown up on the colonoscopy. Usually a colonoscopy trumps an MRI scan so this was an unexpected result. He proposed to take the results of both to the next MDM (multi-disciplinary meeting) to try and come up with an explanation.

It also showed adhesions but the fact they existed was not news. Since shortly after my reversal I had been complaining of an ache around the anastomosis .

3) Given the very variable nature of my digestive system and my recent weight loss I wondered if it was finally time to bite the bullet and start taking a sequestrant to treat my severe bile acid malabsorption. I had been fighting shy of taking yet more drugs and have been controlling it Loperamide.

I asked if it would be possible to prescribe Colesevelam (the tablet form) rather than Questran (powders) as I had read many reports of the former being easier to tolerate. I was aware of the cost differential, a factor of 10. He said that for the good of the health service budget I should try the Questran first but this would be a discussion for me and my GP.

4) I mentioned that I had a blood test organised for a couple of weeks time and would send the results through to him. I had asked for a cholestrol check to be carried out.

He would organise my next appointment once the MDM had discussed my results. He then took me back to the student doing the genetic study and I spent 10 minutes answering questions and spitting (saliva into a sample tube).

Where did that get me?

I’ve learnt about the possibility of a new drug to treat the inflammation in my colon and I’ve set in motion potentially directly treating the BAM. I think I’ll leave the decision on that one until my next appointment when we have an answer on colonoscopy/MRI scan conflict.

…and in the meantime an old client has called me up to see if I would be free to do some work for them. Retirement will have lasted precisely 5 weeks…

Crying Wolf

Crying Wolf (or maybe not)

I started writing this post a while ago but for one reason or another didn’t get round to finishing it. (My wife would say it’s a “man thing”). I’m not sure it will add greatly to the body of knowledge about Crohn’s but, from a purely personal level, it allows me to keep a record of my appointments and procedures.

I’m returning to a subject I’ve written about before but this time the effects are worse and have lasted longer, sufficient to make me very concerned.

On 5th May I had an annual check-up with my GP and had pre-empted the appointment with a full blood test. The results came back OK except for lymphocytes and platelets (expected). I emailed a copy to my gastro consultant and mentioned that I had been getting abdominal pain for the last few weeks and rushing off to the bathroom. He replied that I should have a calprotectin test and would have a sample pot sent to me (hopefully).

The symptoms are a pain around the midriff; extreme tiredness – so much so that I can get in from work, have dinner, then collapse on the sofa and wake up at eleven ready to go to bed; but most worryingly, and not wanting to get too graphic in a blog that may be read by non-IBD sufferers, let’s just say the phrase “through the eye of a needle” comes to mind.

I’ve been told told that if you can visualise  pain it is much easier to deal with. Mentally I lined up the suspects. The “upset stomach” could be from :

i) a virus picked up on the train up to London
ii) eating something dodgy (I did eat out in a restaurant in Highcliffe one day and the food was pretty disgusting)
iii) wearing a very tight belt whilst doing a lot of physical work

or the one that constitutes the “elephant in the room” – five years of Crohn’s remission was at an end

Ironically the last time I saw my Gastro consultant I had told him I felt very well and couldn’t see why we didn’t extend the gap between appointments from six to twelve months. I was now regretting it and had started to notice my weight was dropping and the ache around my anastomosis was getting more frequent.

I would have to see what the calprotectin test showed. The sample pot had still not arrived so I took it upon myself to get one from my GP, fill it with the “necessary” and drop it into the IBD Nurses at Guy’s Hospital.

The result came back on 14th June. My consultant emailed “Interestingly it has risen to 436” (previously 179) and suggested that a colonoscopy ought to be the next step. “Would I be OK with that?” Not a problem but I was starting to wonder if I was “crying wolf” as ever since I had dropped the sample in, I had started to feel a lot better. I think this must have been wishful thinking. Something had caused my calpro result to keep rising and my weight was still falling (down to 82kg from a high of 91kg).

The colonoscopy was duly booked – 12th July. I wondered how that would allow my small intestine to be seen. My consultant wrote back  that the colonoscopy would be able to reach just past the anastomosis, the most likely place to find inflammation if it had restarted. If the scope showed nothing then I would need further tests by which I assume he meant a scan. I’m sure he would not want to risk a Pillcam.

This post will continue after (tomorrow afternoon’s) scoping. One more sachet of Citrafleet to take………

The Colonoscopy

I’m not going to describe the whole colonoscopy process, just the things that made this one slightly different and the conclusions.

Firstly taking the prep timing has changed at St. Thomas’. For an afternoon procedure instead of taking both lots of prep solution on the previous day they are now split and the recommendation is to take the second sachet at 9:00am on the day of the procedure. This didn’t seem like a good idea, especially with a travel time of nearly two hours on public transport, I decided to take that second dose at 5:30am and I’m glad I did. It had only just finished “taking effect” at 10:30am when I was due to leave home.

Secondly, and this one would make a good subject for a fashion blog, the very flimsy paper briefs that one previously had to put on have now been replaced with some very stylish dark blue paper boxer shorts with a large slit up the back. Modesty prevented me from taking a selfie and posting it.

For the first time ever the nurse had problems finding a vein for the cannula. After two attempts with my right arm she handed me over to her colleague. Luckily she tried the other arm and was successful.

cannulaOne of the doctors came in to get the consent form signed and I explained that I wanted to keep alert throughout the procedure, so that I could ask questions, and mentioned that my weight was a lot lower than previous scopes. He decided to give me less sedative than usual and that worked fine.

Whilst my main GI consultant watched on, the doctor I had seen earlier started the scoping. As the camera made its way ever onwards it started to show mild inflammation in the colon but when it reached the anastomosis the inflammation disappeared. The doctor decided to see how much further he could get the scope into the small intestine, made possible by my ileocaecal valve having been removed during my ileostomy

Normally I don’t notice the movement of the camera, the air to expand the gut or the liquid used to clean the lens but that final push was the exception. I ended up being asked to roll onto my back which made it a little  easier. Once again there was no inflammation and with that the scope was withdrawn.

The conclusions were : ongoing, mild colonic Crohn’s disease but no evidence of recurrence in the neo-Terminal Ileum (the most likely place for it to reappear following surgery).  My consultant said that colonic Crohn’s would explain the high calprotectin result but he was clearly most concerned about the weightloss (down below 80kg for the first time since before my ileostomy) and sent off a request for an MRI scan.

By 15:30 it was time to leave St.Thomas’, clutching a copy of the report and accompanied by my escort , a fellow GSTT IBD patient who gave up her afternoon to help. Thank you. (I have since been able to repay the favour by agreeing to talk to some undergradute nurses about “Living with IBD”).

On the way out we called into the  MRI unit to see if it was possible to book a date there and then. Unfortunately bookings were done from a different location but the receptionist confirmed that the request was already on the system and marked “Urgent”. I should be seen within 2 weeks.

The Scan

After a couple of days I tried ringing the MRI Unit to find out if they had allocated a date yet, after all, if I was to be seen inside two weeks, surely I would need to be on the schedule by now. Disappointingly the answer I got was that they were working through the bookings “in order”. It didn’t make a lot of sense.

I left it over the weekend then tried again. This time the person I spoke to must have realised the urgency and I was given a date of Friday 29th July, at Guy’s, 12 days from the request going in. I would not need to be accompanied this time as there would be no sedation involved. I then received a letter for a follow-up gastro appointment to discuss the results – 5th September.

The day of the scan arrived. I made my way into the unit. It was newly refurbished and extended and had only been open a few days. The number of scanners fhad been increased from two to four.

You are asked to arrive early as there is a prep solution to drink. I knew what to expect – a thick, lemony liquid with the consistency of wallpapaer paste. I must remember to keep stirring it. But no, it was all change. I was given a one litre bottle of a clear fluid and a glass of water as a “chaser”. The nurse told me to drink a cup of the liquid every 5 minutes. She mentioned that it wasn’t that palatable and she was right. I must have managed to drink about three quarters of the bottle before it was time to be cannularised.

prepFor the second time in 3 weeks the nurse had difficulty in finding a good vein that would take the cannula tip all the way in. On the third attempt, using the other arm, it was finally in place.

I’ve described MRI scans, in detail, elsewhere in this blog so won’t repeat it all here. They are noisy machines so I was rather surprised to have fallen asleep towards the end of the procedure. I think it shows just how tired I have been recently.

A radiologist would interpret the results and have the report ready for my gastro appointment.

Harmatology

Just a routine, 12 monthly Haemo appointment. I didn’t have a list of questions because nothing had changed since my last visit. The doctor called up my records on her screen and said, in passing, “just to put your mind at rest – the MRI scan didn’t show anything unexpected, just some mild stricturing in the small bowel which had been seen before.” Interesting. I wasn’t aware of the strictures. Something to discuss on 5th September. To be continued…..

Managing Consultants and Appointments

What follows is based on my experience being treated by the UK NHS as both an in-patient and an outpatient, mainly with gastroenterologists but more recently haematologists and hepatologists as well. The dynamics described may be different where you are funding your healthcare privately and paying a consultant directly or via an insurance company.

If this post seems rather analytical and cold, with few emotional considerations, it is because I have found this “matter of fact” approach has made the Crohn’s, other minor annoyances such as PVT, potential PSC, BAM, hospital stays and consultants, a lot easier to deal with.

I thought long and hard about how I could encapsulate my attitude in the length of a Tweet and came up with this :

I AM THE EXPERT IN MY HEALTH

MY CONSULTANT IS THE EXPERT IN MY CONDITION

For old hands at the “health game” most of this will probably seem blindingly obvious so it’s aimed at newer patients, ones that become tongue tied in front of their consultant or that find appointments difficult to handle.

1)  Making Lists – Definitely in the “blindingly obvious” category. This has to be the best thing I’ve ever started doing. I used to go into the consulting room with the attitude “of course I’ll remember all the things I want to ask.” It was a male arrogance thing. I’d then arrive home and my wife would say “and what about x?” Blank stare. “Why didn’t you write a list?” Another blank stare. This went on for many years (male arrogance is a long term condition) until the penny finally dropped. Nowadays I start preparing a list several days before the appointment date. (The one shown below was compiled in preparation for seeing the haematologist prior to weighing up the advantages/disadvantages of starting Warfarin).

 

Once you’ve written it out talk it through with someone close to you as they may have spotted things in your appearance or behaviour that they are concerned about but “didn’t like to mention” or didn’t think were significant.

Nowadays, I print out the list and make a point of having it in my hand as I enter the consulting room and after the initial pleasantries explain that there are a number of questions I want to get answered and point to the list. This sets the scene for what follows i.e. don’t expect to finish this consultation until we’ve been through it all.

It is worth noting down the answers, although these should be covered in the follow-up letter that you get sent a few days later. (Or rather SHOULD be sent –  more about that further on). Another advantage of having a paper list is that if you print it, or write it out nice and legibly, and then become emotional or tongue tied you can hand it over and let the doctor work their way through it.

2)  Manage Your Appointments – This may or may not be necessary depending upon how your hospital works. I get treated by two different departments in the same hospital. One of them will make the next appointment for you there and then so that you leave the hospital with the appointment letter in your hand. The other department says they will contact you closer to the time but there is always that doubt at the back of my mind that the request will get lost somewhere in the system and by the time I realise there’s a problem the appointment gets delayed.

Nowadays I set a reminder in my calendar, two months before the appointment is due, to contact the consultant’s secretary just to remind them and that does the trick. Two months is the right length of time for me but it may differ in your area. For Guys and St.Thomas’ (GSTT) it’s usually between 3 and 6 weeks to get an appointment with a particular consultant or to book up for a procedure such as an endoscopy.

3) Continuity – Generally I like to see the same consultant each time so there is continuity in approach and it is not necessary for them to go through my whole medical history before starting the consultation. I didn’t used to question it when I was seen by different registrars or junior doctors but as my health worsened I really felt it could become a matter of life or death (maybe slightly over dramatic!) that I saw the person with the most experience/expertise and who understood my case.

The best way to approach this is to tell the nurse that weighs you that you need to see a particular consultant and they can then put a note to that effect on the front of your file or make sure your notes get put in the right pile. Occasionally it doesn’t work and you end up being called in by another doctor. At that point I politely explain that I’m not doubting their medical knowledge but I do need to see my usual doctor. This has always worked OK.

All the above goes out the window if I’m just having a routine, follow-up appointment where no important decisions need to be made. If that’s the case I’m happy to see any of the doctors. I do actually question whether this type of appointment has any value and would be quite happy to do it by email, Skype or even an old fashioned telephone call. The only advantage of the face-to-face contact that I can think of is the doctor being able to spot something of concern that you haven’t noticed or the ability to carry out a physical examination.

4) Medical History – important if you are seeing new doctors or consultants. If you’ve only been suffering from Crohn’s, or whatever disease you’ve got, for a short period then it’s likely that you can remember all the key dates and events that have brought you to this particular appointment.

If you’ve always been treated by the same hospital then your medical history should be available to any of the professionals treating you via their records system but if you’ve moved around between hospitals, health authorities and consultants then it is likely that there won’t be one single, unified set of records.

When moving to a new consultant and/or hospital, or if you are unfortunate to have been admitted to a new hospital as an emergency, possibly unconscious, then a brief outline of your history can save a lot of time in the early stages of working out what has gone wrong or which will be the best area to start investigations or treatment.

35yrs_MedRecs35 years of medical records

[For years I was always being asked when was my first Crohn’s operation and what exactly the surgeon did at that time. I knew it was an emergency admission to Croydon General Hospital sometime in 1979 (suspected appendicitis) and that it turned out to be a perforated bowel, but I couldn’t say whether any gut had been removed or if it had simply been repaired. It was only in 2011, when I obtained copies of all my medical records from Croydon Health Authority that I could finally give the definitive answer.

Since then I’ve painstakingly, some would say anally, extracted all the key points from consultation notes and follow-up letters and summarised the whole lot, in date order, onto a spreadsheet. This is my “back-up” evidence from which I have then drawn up a simple, one page chart representing my full Crohn’s history and a second, more detailed one, covering the last 6 years. My current set of consultants seem to approve of this approach and have put copies into my notes.

Click here to open pdf – “Health Record 1977 to 2015”

Click here to open pdf – “Health Record 2010 to 2016”

Unfortunately very few x-rays were still available but I consoled myself with a couple of more recent CT scans which I can view using Osiri-X Lite (available as a free download). I find them fascinating but my work colleagues are not quite so sure.]

Maybe a step too far! Scenes from CT scans on my ‘phone

5) Contacting your consultant between appointments – Some consultants are happy for you to email them directly when you have a query or a problem or there may be a dedicated, condition specific, helpline that you can use as the first point of contact. It really does seem to vary. I have read of other patient’s experiences where the “patient confidentiality card” is played to avoid email contact. I’ve never come up against this. So far so good. You should be able to work out an individual email address as organisations like to follow a particular format or you could simply ring up their secretary and ask for it straight out. Nowadays many hospital websites clearly display the consultants contact details.

This doesn’t come without some responsibility from the patient’s side. I make sure that I only contact the consultants directly if I have something that is urgent and only they can answer or they’ve asked me to report back about a problem. I was being treated by three different specialities during 2012/3 so I usually copied any emails to all three consultants as it helped to maintain the co-ordinated care.

It is worth keeping copies of the emails as I found out when I went to have a second bone marrow biopsy and the doctor performing the procedure was not aware that she needed to use a blood thinner to get usable samples (which is why the second biopsy was required). I was able to show her, on my phone, the email trail that explained it all after the previous biopsy.

6) Follow-up letters – shortly after an appointment or procedure your consultant should write a letter to your GP – secondary care provider to primary care provider. These letters are important to keep your GP up-to-date with your condition and a copy should also be sent to you, normally with a caveat that it is a communication between medical professionals.

This system of follow-up letters has always worked smoothly for me with gastroenterology and hepatology issuing them a couple of days after the appointment but then I came up against Haematology. The appointments were fine. Lots of good, open discussion but no follow-up letters. Four appointments and no follow-up letters. I did query this a number of times but still no letters, just apologies.

A few months on and guess what, still no follow-up letters. In the end I looked at my hospital’s website and found the name and email address of Haematology’s head of department. I contacted her, explaining the situation and suddenly I had four, retrospectively written, follow-up letters.

Are there lessons to be learned? I think so.

Lesson 1 – If you are not getting the service you should expect then go to the top and explain the problem. Will this always work? No, but might at least set the wheels in motion to getting a solution.

Lesson 2 – Keeping your own record of what gets discussed and agreed during a consultation is worthwhile if you end up in a similar situation to the above. I use a blog to record what goes on but if you don’t want to share your experiences with others then keep your own private health diary for future reference.

7)  Manage Your Appointments 2 – er, haven’t we already done this one? Yes, but this is managing how the actual appointment goes. I’ve left this one almost until the last as it’s fairly new territory for me. I hope to develop the theme in the future to reinforce the notion that the patient should actively manage how the appointment goes and make best use of the resources available i.e. your consultant’s experience and advice.

This train of thought was triggered by a visit to, yes you guessed, Haematology when things started to go very wrong. My usual consultant wasn’t available so I was being seen by a new doctor. The lack of follow-up letters meant that he started discussing a subject that had been “parked” a year previously.

At that point it struck me that going into the appointment I had a very clear idea of the outcome I was expecting and of the information/areas/risk factors we needed to discuss to arrive at a conclusion. (The decision was whether to start Warfarin or not). Clearly my issue wasn’t with the new doctor, as he had simply referred to the latest notes, so I asked to see the Head of Department. I knew this would never happen, but at least it had the effect of getting the appointment back on track with the appearance of one of the senior consultants who had been a party to reviewing my case at a recent MDM (multi-disciplinary meeting). I ended up with the decision I had been expecting.

I’m wondering if it would be worthwhile starting the next appointment by explaining where I want to be the end of the appointment and how I see us getting there. Would that be too pushy?

8) and finally – as always – keep a sense of humour if you can – useful in surviving ALL medical encounters but I accept this is not easy if you feel really terrible; you’ve been waiting an hour to be seen; the phlebotomist has made several attempts at finding a vein; that person who arrived after you has just been called in before you; etc. – I’m sure we’ve all been there.

Sometimes humour doesn’t work. A few of the doctors I have met do seem to have had a “humour bypass” (I’d just like to make it clear that this doesn’t apply to any of the fine doctors who are treating me at Guys and St.Thomas’, especially the ones that drive the endoscopes or biopsy needles). I have however been left in the situation in other, lesser establishments where my witty remark has gone down like a lead balloon and I’m left staring at a doctor who is clearly thinking “should he be in the psychiatric ward?”.

..and remember if you’ve been kept waiting longer than you were expecting it’s probably because your consultant has spent more time with preceding patients than the allotted 10 minutes. This works both ways. You may also need more than your ten minutes.

IBD Awareness, Stomas and Nursing Heroes

The theme for this year’s “World IBD Awareness Day” on 19th May was “Improving quality of life for people with IBD” and in particular the importance of Specialist IBD Nurses who can make such a big difference to patients’ lives.

My own experience of IBD Nurses is fairly limited. I have been lucky enough to only need to contact them with simple questions by ‘phone or email. I know, from conversations with other IBD patients, just how much support some get when they need help. I say “some” because not all patients have access to a specialist nurse and/or a helpline. A fellow IBD’er ran a poll on Twitter and as you will see from the results a significant percentage of patients are missing out.

Poll_1I’ll return to this point at the end of the post.

Last week saw “International Nurses Day” (12th May). It was an opportunity for patients to take to social media to express their thanks, publicly,  to nurses for the care they have received. (I would hope that patients thank their nurses face-to-face anyway).

I would usually fight shy of naming my nursing heroes. Patient confidentiality works both ways but there are two nurses who made a huge difference. If you will indulge me over the next few paragraphs I will explain their significance.

I’ve broadened the definition of “specialist IBD nurses” slightly to include stoma nurses as it neatly allows me to combine both the subjects of this post.

Whilst stomas are not the sole preserve of IBD patients it is a sad fact that many of us will end up with one, temporarily or permanently, at some point. I’d like to explain how the right support at the right time made a real difference to what could have become a very difficult period of major adjustment – getting stoma’d.

In August 2010 I had already been warned that I might come out of the operating theatre with one and to that end I had met with Fiona, the first of my nursing heroes, one of the stoma nurses based on the 12th floor at St.Thomas’ Hospital. She had spent time with me during the pre-op period explaining just what wearing a “bag” involved, some of the challenges I would face, answered my many questions and then marked the optimal site on my abdomen for the surgeon to aim for.

Coming round in Recovery, post-op, it wasn’t a great surprise to find the worst had happened. For those first couple of days after surgery you are so high on a cocktail of drugs that seeing your own, living stump of intestine poking its way through your abdominal wall is somewhat surreal. It’s at the point when your consciousness returns to some form of normality that reality hits and you need all the support you can get to start coping with this alien being and alien lifestyle. The thought of carrying round a bag of s*** fixed to your waist…..

Calmness and confidence are the order of the day. Fiona provided both in pouch loads. Nothing flustered her and that positive attitude transferred across. (Well, I like to think it did, but reading her ward notes from the time proved that reality may have been slightly different). She patiently visited me each day until she was confident that I could manage on my own.

Wind forward to the day of discharge and suddenly you’re home, alone (metaphorically speaking). It’s down to you to manage without the immediate support available on the ward. Fiona gave me a follow-up call to make sure everything was going OK and at this point my care was handed over to the local stoma nurse. This was Julie, my second nursing hero, based at East Surrey Hospital. She made contact shortly after my discharge and came to see me a couple of days later. She immediately put me at my ease and like Fiona was calm and unflappable.

I saw her on several occasions, not always in the best of circumstances. There was the time when my bag started filling with bright red blood, and the time when the stoma started prolapsing, oh, and the odd leak. Each of these problems could have knocked my confidence for six but each time Julie had a solution and some comforting words. By the time I was ready for the reversal operation I had become completely at ease with my lot.

There was never any question of a stoma nurse not being available either in person or at the end of a ‘phone. Why should it be different for Specialist IBD Nurses? I wonder if it comes back to the old idea of IBD being the “invisible” disease. Stomas are visible; tangible. For many IBD patients, those who have not undergone surgery, you really wouldn’t be able to tell they were suffering from IBD just by looking at them. Maybe that’s why IBD is not given a universal high importance.

You would think that providing these services would be a “no brainer”. Even if we ignore the advantages to the patients themselves then surely they must make sense on purely economic grounds. They act as a filter between the patient and the consultant. This will alleviate some of pressure on consultants’ time and potentially avoid the need for booking short notice outpatient appointments which inevitably means overloaded clinics. They may even reduce the number of visits made to the frequently beleaguered Accident and Emergency Departments.

I guess that it is all down to squeezed budgets and IBD not being sufficiently high profile to make it a political “hot potato”. This is why we need IBD Awareness Day.

Pavlov’s Dog and Vlogs

First published 5th April 2016

There hasn’t been an #IBDChat on Twitter for a while so the last hour or so has been quite enlightening. We may have strayed from the original subject of “the causes of IBD” but it gave a good indication of the subjects that sufferers are concerned about.

The conversations were mainly about the physical aspects of IBD and it wasn’t until close to the end that any psychological aspects were mentioned.  It does seem to be an area that needs more open discussion both inside and outside the IBD community. For some sufferers the psychological effects may be even more debilitating than the physical ones.

I have used the hashtag #crohnspatterned to describe how I feel Crohn’s has affected me. When I checked to see if the tag had been used by anyone else it turned out to be unique. I’m sure the phenomenon is far from unique and will affect sufferers of other chronic conditions as well.

Let me make it clear that I have escaped pretty lightly both physically and mentally but the experience has been enough for me to realise how things could escalate. I’m starting to feel that Crohn’s now has me patterned like Pavlov’s Dog.

(Just in case anyone is unfamiliar with the story of Pavlov’s dog  here’s a three sentence version. Pavlov was a Russian psychologist born in 1849. As part of an experiment he found that it was possible to condition a dog to associate the sound of a bell with receiving food. The dog, eventually, would salivate at the sound of the bell in anticipation of the food.)

I have a variety of “bells” which act to trigger my digestive system into action, unfortunately we’re not just talking saliva.  The main triggers are the alarm in the morning; that chiming sound on public transport that heralds the “this train is about to be delayed for an indeterminate time” announcement; the sound of my car starting as I am about to embark on a long journey.  So far I have been able to control the effects by extra Loperamide capsules (Imodium) and mind over matter but I can envisage a time when they simply are not enough. Maybe this is all linked to having a “second brain” in our gastrointestinal systems and the triggers are affecting it.

Vlogging

I made a comment on the #IBDChat that I find the use of words such as “poo” and “pooping” when discussing IBD rather demeans the subject and makes it appear less serious than it is. Just my opinion. You may or may not agree but that leads me neatly onto….

I will admit to preferring the medium of blogging to vlogging. Why? Because I can read and concentrate on the content without being distracted by the colour of the curtains in the background or the appearance of the vlogger, etc. Maybe it’s a generational thing as selfies don’t do a lot for me either. Whatever.

A fellow IBDer asked me if I’d ever watched any of the IBD vlogs on YouTube and I had to admit that I hadn’t. They asked me to have a look at a particular one and asked my opinion of it. Now I am not stupid enough to name that vlog here or what the subject was. I don’t want to start some internecine spat within the IBD Community but. ….

I found the vlog, hit play and sat back to be educated or enlightened. After a few seconds I started to ask myself if it was a joke or some kind of spoof. I discounted irony. I kept watching. It made me feel uneasy and I started wondering what benefit it added to our IBD world. If this was meant to be adding to the cause of IBD awareness then it failed.

If you are going to make an IBD vlog then please make it relevant and don’t cheapen the subject. Nuff said. Can’t see myself making one anytime soon.

 

 

 

If Facebook was older

“Thank you for letting me join the group. I’m a 22 year old male and have not been feeling well over the last year or so. I make frequent visits to the bathroom and my weight is dropping off. I’m currently 54kg which is not great when you are six foot tall. I went and saw my GP. He initially told me it was “nerves” and later changed that to “spastic colon” but having recently spent 10 days in Croydon’s Mayday Hospital, undergoing tests, the diagnosis is now Crohn’s disease. I’ve been prescribed steroids for the inflammation and codeine phosphate to slow my system down. I know that the disease has no cure and that if I’m unlucky I could end up having surgery. That’s the bit that really scares me because the thought of going into hospital fills me with absolute dread. Just going there for a barium enema was bad enough….”

If Facebook was older, and had been around in 1978, I may well have posted the above. Nowadays I read similar stories from young adults, many also in their early twenties, explaining that they have been recently diagnosed and the impact that diagnosis has had upon them both physically and mentally. Some are truly heart rending. I tend to forget I was in a similar place all those years ago.

A few decades on and I am currently in clinical remission but not without a few related health issues arising along the way. I would like to hope that others, who have just started out along their Crohn’s path, can achieve a similar sort of equilibrium sooner rather than later. I’m not naive enough to think I have achieved full closure as we all know that Crohn’s can return when we least expect it.

I was determined to at least attempt a partial closure and to this end set out to write a book based on the story so far. With a “big” birthday nearly upon me it is 99% complete. A few finishing touches and that will be it. The next part of the challenge will be to publish it, another new skillset to learn. Watch this space.

cover
Labour of Love

The biggest difference between the year of my diagnosis and the present day is the availability of IBD information. When I was told “you have Crohn’s” it was just something I would have to live with, take drugs for and, if I was unlucky, might end up needing surgery for. That was pretty much it. Nowadays, if you search the web for “Crohn’s Disease” there are over 8,000,000 entries ranging from excellent, well written information sites at the top end of the scale down to the downright dubious ones which are only there to try and sell some miracle cure or diet to desperate sufferers. Then there are all the forums, FB pages and blogs (like this one) where anyone can air their opinions.

I was discussing this subject with my sister-in-law. She asked if I thought I was better off having spent many years in blissful ignorance rather than in information overload. She remarked that I had maintained a positive attitude throughout and thought that it must have helped coping with the disease. My immediate response was “I don’t know”. I can see the arguments from both sides but having given it further thought, on balance, blissful ignorance was probably best for me. Fortunately/unfortunately this is no longer an option.

As ever one train of thought leads to another. For instance, what should the patient expect from their consultant? At initial diagnosis should they be told the worst possible outcome or should all the tests results and procedures to be completed before going that far. I had reason to question this at the end of May 2012 when it was possible that I was (and still may be) suffering from PSC (Primary Sclerosing Cholangitis). To confirm the diagnosis needed a number of scans and biopsies to be carried out but before any of these happened the consultant was talking about needing a liver transplant. You can imagine how I felt, sitting on the edge of my hospital bed, to be confronted with those words. It takes a lot to faze me but even I didn’t knw how to react. Having now had the tests it is possible that I have the beginnings of PSC but nothing definitive. Did I really need to have the threat of a transplant dangled before me? Was it all down to a lack of bedside manner? Can bedside manner be learned? (That would make a good subject for, maybe, a survey).

..and my other question – how should we respond to the newly diagnosed, or waiting to be diagnosed, IBD sufferers on SoMe? Personally I work on the basis of trying to be positive, as I have plenty of positives along with the not so good times. I have seen other respondees jump straight in with tales of multiple operations, months in hospital and relationship break-ups. The FB entry that prompted me to write this piece was from a new sufferer, along the lines – “I’ve got Crohn’s; it will mean having an operation and ending up with a bag; my life is over.” After many supportive comments one person responded with “if it’s a choice between dying or having a bag then I know what I would choose.” To me it seemed so insensitive.

I’m not denying that all these things can happen but should we really burden someone who is just coming to terms that they have the disease with all the potential “baggage” that may, or may not, come with it? After all, we all suffer in different ways; we all cope in different ways; we all survive in different ways.

I would like to know if you think I’ve got this all completely wrong or if you agree. Answers on a tweet to @crohnoid.

Goodbye 2015

It was a quiet year, in fact I’d go so far as saying a very quiet year from a health point of view. That’s why these posts have become less and less frequent. During November, however, my stress levels were rising and not because of the imminent upper GI endoscopy.
One of my clients decided to move office from Central London to Canary Wharf. No staff consultation. It was a fait accompli. In November the move took place. I find the new office soulless, lacking in atmosphere and more importantly, for a Crohn’s sufferer, the bathroom facilities are unpleasant, insufficient for the number of employees and made worse by being often out of order. Oh, and the coffee tastes funny which I can only put down to the water!

…and as for Canary Wharf. I would describe it as a culturally barren, corporate windtunnel, full of expensive food outlets and poncey clothes shops. (Would anyone really buy an outfit comprising a green tweed jacket with pink collar and matching pink moleskin trousers?)

Getting there means relying on either the Docklands Light Railway (bearable) or the Jubilee Line (no seats after 6:30am). In Central London I used to be able to walk to the office from any of the major stations – Victoria, London Bridge or Waterloo – my choice. It meant less stress, more exercise, better chance of weight loss. The only redeeming feature of Docklands are the photo opportunities, as long as you like modern, glass facades and super yachts.

Happy New Year 2016

What better way to start than a visit to the hospital? In this instance it was for a planned, routine, gastro appointment. I had been putting it off until I had the results from an upper GI endoscopy. The scoping was carried out on 14th December and I had emailed the gastro secretary the next day asking if she could arrange an appointment. Bearing in mind we were close to the Christmas break I was expecting a date some time in late February or March at the earliest. I was amazed when 5th January came through. I produced the obligatory list of questions/topics for discussion.

My appointment was booked for 4:00pm but I didn’t make it into the consultation room until gone 5:00pm. My consultant did apologise for the delay. I know that it’s the price you pay for having a consultant that isn’t trying to hurry you out of the door when your ten minutes are up. The large waiting room is a lonely place when you have one of the last appointments of the day.

empty_waiting
The empty waiting room in Gassiot House

After exchanging a few pleasantries he asked me how I was feeling. I said generally OK but over Christmas and the New Year both my wife and I had been suffering from some digestive bug that rather put a dampener on the festive season. As we were both suffering the same symptoms I was sure it was nothing to do with Crohn’s. He said that I was the best person to judge if I was having a flare-up. I didn’t agree as I honestly can’t remember what it was like. I’m starting to wonder if I’ve ever had a really bad flare. I have never felt the need to go into hospital as an inpatient to sort one out.

One thing I did not understand – the operation I underwent in 2010 was described by the surgeons as “one of the most complex ever”,” very difficult”, “enjoyable”. If my Crohn’s was that bad how was I surviving at the time. He replied that there was not necessarily a correlation between the complexity of the surgery and the acuteness of the Crohn’s. The operation may have been difficult because of the involvement of other parts of the body. This rang true as one of the surgeons had told me that my intestines were starting to adhere to my back muscles.And so to the list…..

Monitoring Regime

With the Crohn’s still in a quiescent state my main concern was how we should structure an ongoing monitoring regime and set some provisional dates. The last tests/procedures were as follows :

Last Colonoscopy – 25th February 2015. Mild inflammation in colon

Last blood test – 12th August 2015. Low platelets, so no change there then

Last calprotectin test – 12th November 2015. Just over 100 but showing downward trend

Last Upper GI endoscopy – 14th December 2015. No variceal banding required

From the above we were able to set the schedule

Next colonoscopy – February 2017 unless calprotectin gives any concern. “From a bowel cancer monitoring point of view I was getting more frequent screening than the recommended norms.”

Next blood test – at Haematology appointment in May

Next calprotectin test – in time for results to be available for next Gastro appointment. I asked if I should stop taking Omeprazole before the test. “Ideally, yes. It would be a good idea as it can slightly raise the test results.”

Next upper GI endoscopy – December 2016. “This would remain annually and exact timing would be dependent upon whether banding was required or not.”

Next Gastro appointment – I suggested we slipped it to yearly. “Yes. Happy with that on the basis that if you are having problems in the meantime we are always there to assist.”

Bile Acid Malabsorption

I appeared to have it well under control with Loperamide and wondered why other drugs used such as Cholestyramine? No straight answer. If you can control with Loperamide then do so.Are there any implications of BAM on the biliary system? If, under normal circumstances, a large proportion of bile acid is recirculated into the system does a patient with BAM then produce more bile acid to make up the shortfall? If so does this put a greater strain on the biliary system and could affect a condition such as PSC? “The body will produce additional bile acid but no link has been identified with PSC.”

Next B12 injection – 8th January 2016

If you have severe BAM does this also mean that absorption of other vitamins and minerals will be affected to the same degree? If yes then should you have B12 injections more frequently than the usual 3 months? Absorption of vitamins is not confined to the area you had removed. B12 is absorbed in the same area as bile acid. I said that I was having B12 injections at the standard 3 monthly intervals but had not found them as effective recently. “You may want to reduce this to two monthly intervals and see if that helped with tiredness/energy levels.”

Continue with six monthly appointments?
See above

Putting something back into IBD community

Having lived with Crohn’s disease for nearly 40 years I was sure that I could help other patients or the IBD community as a whole. As I have been toying with the idea of retiring I should have some time on my hands. That triggered a discussion on the factors I was considering in my decision. I mentioned health issues. He hoped that I wasn’t putting too much emphasis on those issues.The Dept had become a victim of its own success because once a patient had been referred there they frequently asked to transfer their care permanently. He had a number of possible areas where patient representatives could help. I won’t go into them here at present until/if they progress further.

As I was leaving I was asked if I would mind helping out with a research project. I said of course I didn’t mind and was introduced to a medical student who was looking for Crohn’s markers in saliva. I spent the next ten minutes spitting into a phial whilst discussing various aspects of IBD. Someone’s got to do it.I walked back over Westminster Bridge towards the Tube station and it started to rain. Don’t think I would have enjoyed riding a horse in the dark, over the river and with the rush hour traffic just starting to build up.

Crossing Westminster Bridge
Crossing Westminster Bridge

My automedicography – a personal view