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.
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…..
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.