Saturday, 20 August 2016

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 three 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 coleected 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 competely 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?

2.     Results of MRI scan?

3.     BAM – could this be causing weight loss etc. Treatment – Questran (low tolerance) Colesevelam.

4.     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.

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 sptiing (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.

One 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 dotor 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 anastomis 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 an apointment letter for a 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.

For 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.....

Thursday, 19 May 2016

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 recently ran a poll on Twitter and as you will see from the results a significant percentage of patients are missing out.


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

The 12th May saw “International Nurses Day”. 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, temporary 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.

Thursday, 21 April 2016

Pavlov's Dog and Vlogs

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.

Monday, 22 February 2016

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.
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.


Thursday, 7 January 2016

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.

Super yacht moored in South Dock, Canary Wharf

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.

Outpatients Waiting Area - St.Thomas' Hospital
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.....
My list of questions
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.
Westminster Bridge in the evening rain