Category Archives: gastroenterology

Pendulum

When I was younger, so much younger than today I never….

….wanted to go anywhere near a hospital. It was my biggest fear. Some of my schoolmates had already been incarcerated to have tonsils or an appendix removed. I don’t know what scared me specifically. Was it the thought of surgery? Was it an enforced stay away from the comforts of home and family? Was it thoughts of my own mortality? My fears turned into reality, in my early twenties, when I found myself in an ambulance, sirens blaring, heading for Croydon General Hospital with suspected appendicitis.

As it turned out it was more sinister than that – a perforated bowel that had leaked into my abdominal cavity and peritonitis had set in. (More of this later) When I left hospital after 3 weeks, most of which were spent on a “liquids only” regime, I had not suffered any particularly traumatic experiences but it had not lessened my fears.

I had been told that this first Crohn’s surgery was unlikely to be the last. In the ensuing years I still considered the knife to be the “last resort”(and, to be fair, so did my consultants). It was the “backstop” (to use a popular word) once all viable medication had been exhausted. In 2010 I was faced with surgery again having tried all the possible drug treatments. Thirty years between operations? Not bad. Three times longer than anticipated. Following the successful removal of a terminal ileum stricture, temporary ileostomy and subsequent reversal, I revisited my thoughts. If I had chosen elective surgery years earlier would my QOL have been better, sooner? The pendulum had now swung the other way and I started to advocate that surgery should not be considered a “last resort” or an indication that all other treatment had failed. It should be seen as an alternative to drug based treatment. It’s an area which various learned bodies are researching.

Then in January 2017 I turned yellow (jaundice). I was sent to see an upper GI surgeon (at my local hospital) who explained that the solution would be to remove my gallbladder. A relatively simple procedure, carried out laparoscopically. When he examined me he happened to notice the large, laparotomy scar stretching up my midline. He asked me to go through my medical history. At the end of my story, which included Crohn’s, portal vein thrombosis (probably due to the peritonitis), enlarged spleen and varices, he concluded I should be referred to a specialist liver unit as the operation would require specialist facilities.

A few weeks later I went to see another upper GI surgeon, this time at Kings. His registrar had started to go through the standard, pre-surgery checklist when I produced a drawing showing the route that my health had taken so far. She metaphorically gulped and went off to find the lead surgeon. He expressed his concern about carrying out surgery and after a lengthy discussion we concluded it would be best to leave well alone and only operate if it became absolutely necessary.

At my request I saw him again a couple of weeks ago as I had noticed a pain in my right hand side and wondered if it was a portent for needing his expertise with a scalpel. He prodded and poked the offending spot and announced that I had a post-operative hernia at the site of my former stoma. Again this would usually be a simple day operation but given my history it was another one to add to the “do nothing unless absolutely necessary” list. It dawned on me that the pendulum had now swung back to its original position. Due to circumstances, in my case, surgery really should be considered as a last resort.

In the meantime the long running “why is my calprotectin so high” question had been resolved. A capsule endoscopy in November 2018 showed that inflammation in my small bowel has returned. I have a meeting with my gastroenterologist next Monday to discuss starting Vedolizumab. I was minded to suggest holding off for the time being but that may not be a sensible position to take as I really do need to avoid surgery for as long as possible. Should be an interesting discussion.

Pre-MAB

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

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

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

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

Blood test results
  • What did the nine phials of blood taken recently show?
Capsule endoscopy results
  • What exactly did the capsule endoscopy show in the way of severity of inflammation and locations? Was it confined to the small bowel?
  • Would it account for pain around midriff? (Could be the hernia that the upper GI surgeon identified a few weeks ago, or maybe adhesions or scar tissue from laparotomy)
  • Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
History
  • Looking at the calprotectin levels it suggests that inflammation started somewhere between November 2015 to June 2016 but was not apparent on other tests
  • It has been 6 months between having the capsule endoscopy mid-November and the appointment.
  • The above suggests that there is no urgency to start on treatment. Is this right?
  • My QOL is good apart from an ache on my right side which the Upper GI surgeon has diagnosed as a post-operative hernia at the site of my ileostomy
  • Surgeon does not want to carry out cholecystectomy or even hernia repair due to varices growing around gallbladder and elsewhere within abdomen. This suggests that I should try and avoid any colorectal surgery at all costs.
Vedolizumab
  • What was the gist of the discussion that resulted in proposing Vedo?
  • How will Vedo help me now? …and in the long term?
  • Are there any side effects I need to know about? Are any of these relevant to my other conditions? (BAM, PVT, splenomegaly, thrombocytopenia, gallstones)
  • Ongoing monitoring regime? Frequency?
  • How good a measure would calprotectin be for progress in treating small bowel Crohn’s?
  • Does the efficacy of Vedo differ as one gets older? Do the side effects change?
  • Reason for needing chest x-ray
  • Haematology suggesting another bone marrow biopsy. Do we need to wait for result before making decision?
Alternatives
  • What if I decide not to go back onto Crohn’s medication at present?
Reasons for not wanting to go onto Vedolizumab
  • Side effects of Vedolizumab.
  • Long term commitment to an infused drug
  • Trips to London (I love London so you would think a few more trips would be welcome but as I gel older will I really be so keen?)
  • Is there the opportunity to have infusions at a local hospital?
Iron levels/Hb
  • What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?

 

From Diagnosis to Surgery

In the dim and distant past I was becoming unwell, the sort of unwell that ended up in dashes to the bathroom. My GP quickly announced his verdict – I was suffering from “nerves”. He gave me a course of Nacton because, as we all know, the way to treat “nerves” is with a medication for peptic ulcers. Thank heavens for locums….

Within 18 months I was “enjoying” my first trip in an ambulance, compete with blue lights flashing and sirens wailing. Was I on my way to die? (Clearly not or you wouldn’t be reading this)

To fill in some of the details I’ll point you at the fuller version of the story. Clicking on the image below will open up a pdf file of my book/journal’s draft first chapter, and some early, rather pathetic, selfies…….

In Case of Emergency

A few months back I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was the triage nurse who asked me lots of questions about health conditions, history  and medications. When we had finished running through the various ailments she complimented me on my knowledge but it struck me that it would have been a different story if I had been admitted unconscious or in a confused state.

Next I saw an A&E Registrar. What would he have concluded if I had been unable to fill in the details? He would have been confronted with a patient with a large scar up the midline and an appendectomy incision. He wouldn’t have been aware why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that I had Crohn’s disease, that there were additional veins growing in my esophagus (varices), that my spleen was enarged or that my platelets would show up around 60, rather than 150+. Valuable time could have been lost trying to solve the wrong problems.

What actually happened it that I handed him a copy of a chart I had drawn up showing the key events in my medical history over the last 7 years. The doctor thanked me and used it as the basis for the questions he then asked.  He then added it to my medical notes. Here’s the diagram :

In the ideal world the NHS would have a comprehensive medical record for each patient, held on a central system, that could be accessed by any doctor when required. A patient’s unique identifier, probably their NHS number, could be used as the reference code. The NHS tried to implement such as system (NpFIT). It didn’t work and there’s a link to the 2014 Report at the bottom of this post.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on or contained within them. Then there are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these all appear to be based in the US.  What I wanted was a standalone device that would be easily wearable and accessible. A bracelet with built-in USB memory seemed to be the ideal solution. The next challenge would be how to record the information.

I searched to see if there was a proposed standard data set for NHS use but could find nothing that displayed more than the most basic data. Certainly nothing that was suitable for a patient with long term, multiple conditions. There was nothing for it but to produce my own format. I settled upon two documents – i) a simple, overall summary plus ii) a very detailed table that recorded each appointment/follow-up letter; each procedure undergone and associated report; and any other relevant items such as emails.

Key Medical Details (with links)

I had already obtained hard copies of all the medical records from the three health authorities I have been treated under and had started the task of entering the relevant sections onto a computer. The thought of entering 40 years worth of notes from scratch would have been just too daunting.

The detail (geeky) bit : initially the bulk of the data was put into a spreadsheet (Excel) using a combination of a simple scanner and text recognition software. As the task neared completion it made sense to convert from Excel to Word as this would allow me to save the document as an html file that could be read by any web browser. The external documents (reports, emails) were scanned or saved as either jpg or pdf files and then linked back to the main document.

Detailed Medical Record

Job done. I can now wear all the relevant my medical details on a simple, universally accessible wristband, rather like a tortoise carrying everything with them wherever they go.

USB Bracelet

There are issues that I haven’t addressed :

Privacy – I don’t have any issues with allowing access to my medical records confidential (if I did I wouldn’t write a blog) but I can understand that some patients would want some type of password or lock on the files.

Security – does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc?

Since originally publishing this post a fellow patient suggested using a QR code to link to a remotely held copy of relevant medical details. The QR could be engraved on a pendant or bracelet but would it be obvious to medical staff how to use it? How about a QR tattoo in a prominent position? More thinking to be done…..

The 2014 Report on NpFIT failure :

*NpFIT – this proposal has been around for several years but proved impossible to implement. The link below will take you to the report outlining why the £6billion project failed.”

https://www.cl.cam.ac.uk/~rja14/Papers/npfit-mpp-2014-case-history.pdf

 

 

 

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