Research
When I retired at the end of summer 2016 I decided to devote some of my newly acquired free time to voluntary work relating the IBD community. Various opportunities were advertised on Social Media and after an initial contact I started working with one of the bowel research charities. My first meeting was in the imposing surroundings of the Royal College of Surgeons in Lincoln’s Inn Fields. It was an eye opener to meet others who had been through similar experiences of chronic disease and surgery.
I have provided PPI (Public & Patient Involvement) input for some interesting, innovative projects including, a team developing software that assesses gut motility (Motilent).
I volunteered to test out a proposed diet for the PREdiCt study to provide feedback on how well their food app worked and whether patients would find it too onerous completing a detailed food diary for right weeks. Later I went on to take part in the diet trial itself.
I am also involved in a long running project (OSIRIS) which is aiming to understand and improve the shared decision making process for patients at high risk of medical complications as they contemplate major surgery. This has lead to further opportunities to get involved with shared decision making training.
Having been a frequent visitor to GSTT since 2010 and using a wide range of their gastroenterologist services I was asked if I would like to join the Gastro Project Board as one of the patient representatives. The role involves vetting proposed research projects from a patient angle and commenting on their acceptability or practicality. Meetings were scheduled for the first Thursday of every month so it seemed sensible to try and book my infusions to coincide with them.
Thursday 2nd January 2020 – Guy’s Hospital IBD Infusion Unit
The New Year had hardly crossed the threshold when it was time for my first Research Board meeting followed by a sixth Vedo infusion.
The meeting proved very informative although littered with acronyms and processes that needed explaining. It was a chance to meet some of the GSTT healthcare professionals that work across the Gastroenterology discipline, many behind the scenes, and whose paths I would not normally cross. After the meeting I made my way down eight floors to the IBD infusion unit.
The procedure went without a hitch. I handed in a sample for calprotectin testing. When the result came back (432) it was very close to the previous two values from the week 8 and 16 infusions. It looked like they had reached a plateau.
COVID19
News stories about a mystery virus in China were starting to appear in the UK Press. One particular story, the building of a hospital in China in just one week, stuck in my mind as I had never seen so many excavators working in one place at the same time. Anyone reading this book will have their own memories and experiences. Having a garden to enjoy and plenty of surrounding countryside to walk our dog made the situation much easier to cope with than for many.
My biggest, practical, concern was having to venture out to the supermarket to get food supplies. I had just started the aforementioned diet trial but it seemed likely to have the plug pulled on it. To the organiser’s great credit they had an agreement with Sainsbury’s to deliver “allowable” foods to participants on a weekly basis. This proved a godsend as they had closed their delivery service to new members, unless vulnerable. They also provided four weeks supply of specially formulated snacks which may, or may not, have included specific additives. Being a “double blind” trial nobody on the team knew who was getting which variety.
A few weeks later a letter arrived stating that I was now considered to be ECV (Extremely Clinically Vulnerable) and would be given priority for supermarket deliveries. I don’t know which of my conditions put me in that category. IBD alone would not have been enough unless I was on an immunosuppressant treatment, which I was not.
Thursday 5th March 2020 – Guy’s Hospital
Another combined trip for an infusion and a Gastro Board. At the end of the meeting the conversation inevitably turned to the subject of COVID19. The professionals were as much in the dark as the patients. On 26th March the UK went into lockdown. There were no more face-to-face meetings and research effectively switched to COVID related issues. Many of the NHS resources were redeployed to critical care and all work on non-COVID research was put on hold.
Friday 6th March 2020 – Guy’s Hospital
A second trip to London, this time as part of the project on Shared Decision Making in Surgery. The workshop started with a talk by a world renowned anaesthetist and then broke up into small work group to discuss how best to communicate the options and risks involved with surgery.
Thursday 7th May 2020 – Guy’s Hospital IBD Infusion Unit
I was somewhat apprehensive of taking a trip to a London hospital now that the UK lockdown had been in operation for seven weeks. Would there be any trains? Would they be crowded? My worries were unfounded. The railway was running a near normal service. When I arrived at Redhill station I was the only passenger on the platform. The same with the train. It appeared that I had the whole 12 cars to myself. A very strange feeling.
Having arrived in London well before my appointment time I walked along the South Bank from London Bridge Station to Tower Bridge and realised just how deserted the capital was. The River Thames was eerily quiet as the clippers and pleasure boats had all been stopped. The river was like a mirror until a lone police boat headed downstream.
Wednesday 17th June 2020 – Haematology Tele Appointment
My first telephone appointment but something to get used to for the foreseeable future. We talked blood, which is hardly surprising for a haematology appointment. There wasn’t a lot to say so we agreed to talk again in 12 months time.
Vedolizumab Infusions and Calprotectin Tests
The eight weekly visits to the IBD Infusion Unit continued throughout 2020. At each one I took calprotectin samples with me. Calprotectin is not a precise science. Any result below 50 is considered to indicate no inflammation is present but some HCPs work to a higher “normal” level of 100. There are many factors, apart from inflammation, that can cause a raised reading : time at which sample was taken; medication (for instance proton pump inhibitors); age of the patient.
Before starting Vedolizumab my calprotectin was heading towards 2000 but after the first 3 doses the level had dropped to 472. It then seemed to hit a plateau in the 400 to 500 range which was rather disappointing. This drug is known to have a slow start but this seemed positively pedestrian.
I already knew that proton pump inhibitors could affect the result but then I read an article about potential increased risk from COVID19 as well. (I had been prescribed Omeprazole back in 2013 to protect my oesophageal varices from reflux). It seemed like a good time to stop. Did I still need it? I asked my gastro, who happened to share an office with his upper GI colleague. The answer came back “OK, you can stop now”. So I did. The next calprotectin result had dropped dramatically to 27, well below “normal”. Had the drug finally kicked in or was my decision to stop taking PPIs in any way linked to the fall? To be honest, I don’t think we’ll ever know.
Halfway through the year I was offered the chance to change over to a subcutaneous (subcut) version of Vedolizumab which would involve self-injecting every two weeks. This was partly as a way of reducing the number of patients visiting hospital but also reducing the pressure on the IBD infusion unit which had an ever increasing number of attendees. Before injecting the first dose a nurse would visit to demonstrate the procedure.
I decided against making the change as I like the opportunity of getting my blood and calprotectin tests done in one place, at one time and knowing that the results will make it onto the GSTT system. This might not be the case if the tests were done at my GP. or local hospital. Another “big plus” was the chance for a fairly relaxed trip to London every 8 weeks with plenty of time to do some exploring before returning home.
I had my infusion and was expecting a quick flush through with a syringe of saline but the procedures had now changed and I was given a full one hour flush. As I had a timed ticket for an exhibition at the Royal Academy and it would be touch and go that I made it on time. I’m guessing that the one hour wait did not prove popular as by my next visit there was a disclaimer form to sign if you wanted to leave straight after the infusion.
In August I received a call from Endoscopy appointments to arrange for a follow-up capsule endoscopy (VCE) to see if the inflammation in my small intestine was still present. I would also need the obligatory small bowel MRI to ensure there were no strictures that could trap the capsule on its journey.
Monday 19th October 2020 – Guy’s Hospital – MRI Unit
I knew what to expect. There was the usual litre of prep solution to drink, made more palatable by the blackcurrant squash I had taken with me. I managed to down the full amount. When a cannula was inserted it didn’t feel quite right but not enough to ask for it to be done again. I would have to see how it went.
The initial scanning runs were fine but as the contrast dye was injected ready for the remaining scans I felt a lot of pain in my arm. I squeezed the alarm button and the scan was halted. The nurses inspected the site of the cannula. Whilst some of the dye had passed into my vein an amount had found its way under my skin and caused a swelling. The nurses explained that this did sometimes happen and that, under normal circumstances, the swelling would dissipate in a couple of days but there was an information sheet that explained what to do in the case of further complications. A new cannula was inserted and the scanning sequence recommenced. This time there were no problems and the scan was completed without further incident.
I had asked for the scan to include cine files and the radiographer confirmed that was the case. Not captured as a matter of course
The forthcoming VCE was considered to be an AGP (Aerosol Generating Procedure) and as a consequence I needed to have a negative COVID result 3 days prior to the hospital visit. It was arranged for a courier to to deliver a test kit, wait for me to carry out the test and then return it to GSTT for analysis.
Tuesday 27th October 2020 – St.Thomas’ – Endoscopy Suite
Another chance to achieve two objectives with one trip to London. First stop – St.Thomas’ to swallow a camera. The purpose of this scoping was to assess my small bowel Crohn’s after a year of Vedolizumab infusions. As it turned out I had been on the drug for 18 months
The endoscopist (with a very memorable name!) had been working at GSTT for 15 years but, surprisingly, our paths had never crossed. He explained that the hospital has access to 7 different camera systems and that their prominence as a leading teaching hospital meant that manufacturers are keen make their systems available for use. The one they would be using on me was made in Wuhan and was the first one to include a type of AI which highlighted frames which needed particular attention when reviewing. All clever stuff.
Unlike my previous VCE, that required a network of sensors much like an ECG, this capsule transmitted directly to a receiver worn on a belt. It was a lot more convenient.
There were two reps from the capsule camera company visiting him that day, watching their product being used in a clinical situation. Did I mind if they sat in and watched? It didn’t matter to me. They joined us and he explained each step, in detail, which was fascinating. The output from the camera was displayed on a laptop, angled so we could all view it.
I asked if it would be possible to examine my oesophagus to see if the varices needed banding in the hope that I could avoid the conventional endoscopy later in the year. Yes it would by adopting an “oesophageal protocol”, a fancy way of saying you lie down as the camera is swallowed so that the passage through to the stomach is slowed down. Swallowing it whilst lying down was not as difficult as it sounded but even so it only took a few seconds for it to enter my stomach.
The bed I was lying on was fully adjustable. I was tilted head first, feet first, then left and right so the camera could video all around the walls of my stomach. A patch of inflammation appeared. They would discuss this at their MDM on Friday. Eventually the camera was allowed to pass into the duodenum and it was time to leave whilst it transmitted the video of its journey to the recorder.
I walked from St.Thomas’ to Guy’s Hospital and made my way to the IBD infusion unit for Vedolizumab infusion No.11, returning to St.Thomas’ the following day to drop the recorder belt back and happened to bump into the endoscopist. He said that he would review the video and report his findings to their MDM that Friday.
The next day I rang him to see if there was any evidence of oesophageal varices that would need banding. He had seen one varix that looked like it might need treating but they would review this.
A follow-up letter arrived from the Capsule Endoscopy VC. It was good news, very good news but I was puzzled that there was no mention of the varix or the inflammation in my stomach. I attempted to contact the consultant who had written it.
Wednesday 24th February 2021 – St.Thomas’ – Endoscopy Department
This procedure had been delayed from its normal slot just before Christmas due to the disruption caused by COVID19. I was surprised that I was considered worthy of having the endoscopy given the stories of long delays for new patients.
Thursday 1st April 2021 – Hepatology Tele-appointment
My last hepatology appointment had been in June 2013 when I was discharged from their care as there were no signs of significant liver disease. However the MRI scan in October prompted my case being discussed at the Benign Hepatobiliary and Pancreatic (HPB) Multidisciplinary Team (MDT) meeting.
The MRI had shown “features of portal hypertension (splenomegaly and varices). Non-occlusive thrombus in main portal vein. Irregular liver outline in keeping with chronic liver disease”. The conclusion “need to explore causes of chronic liver disease”.
The tele-appointment was with the head of department who I had met several times before as he usually carried out my yearly upper GI endoscopies. He explained that it was important to re-assess my biliary tree for signs of PSC (Primary Sclerosing Cholangitis) every so many years. He recommended that I have an MRCP scan and an autoimmune screen. He would put in the necessary request forms.
Tuesday 27th April 2021 – Gastroenterology Tele-appointment
I had a brief conversation with my usual gastroenterologist. My Crohm’s was well under control, my calprotectin was under the 50 mark and my bloods had no new anomalies. He noted that his colleague would be monitoring the liver investigation.
Wednesday 19th May 2021 – St.Thomas’ – Endoscopy Department
This would be the chance to see if the banding carried out in February had been successful. This would normally have been carried out 3 or 4 weeks after that procedure but given the pressures the NHS were working under then 3 months wasn’t too bad. As usual I requested to be put fully under as an Upper GI endoscopy is the only procedure that I really struggle with.
When I came round from the sedative the good news was that the previous banding had been successful and no further banding was needed.
Wednesday 26th May 2021 – Guy’s Hospital – MRI Dept
There was no need for any prep drink as an MRCP only looks at the biliary system. Everything went without a hitch.
The follow-up letter made interesting reading. I had been referred to the liver clinic due to a “transient increase in ALP”. (Alkaline phosphatase is an enzyme that is primarily found in the liver, bones, intestine, and kidneys. Abnormal levels of ALP can be caused by liver problems.) My autoantibodies had now been checked and were all negative and the MRCP showed no changes that suggested PSC. “There is no current evidence of PSC and this is even more significant nearly ten years after the suspicion was raised.”
The MRCP did confirm an irregular liver outline but that was put down as a consequence of secondary vascular changes, brought about by PVT.
(Autoantibodies are antibodies (immune proteins) that mistakenly target and react with a person’s own tissues or organs).
So It Goes
The eight weekly Vedo infusions continue as do regular outpatient appointments, albeit at slightly greater intervals and over the telephone rather than face-to-face. The last calprotectin test, in June, was 48 and I have not been asked to provide any more samples for the time being.
The last time I spoke to my gastroenterologist he said “let’s see when you had your last colonoscopy. 2017!” so I knew what was coming next. I’ve checked. I am on the waiting list. Something to look forward to for 2022.
