Monday 24th April 2017 – Guy’s Hospital – Gastroenterology
I hadn’t been expecting this appointment, neither had my gastroenterologist, but the booking system had other ideas. It must automatically book one every 6 months and didn’t take into account any ad-hoc appointments in between. I had originally intended to cancel but, in the end, was pleased that I hadn’t as there were important issues we needed to talk through.
What did the biopsies show from last month’s colonoscopy? The report from the path lab noted that they were consistent with “quiescent” Crohn’s disease. This result was about as good as it could get. Once you have the disease there will always be some signs, even when in remission.
What could explain the rising calprotectin levels given the outcome of the recent colonoscopy? To be honest, he simply did not know. He had been concerned that something had been missed during a previous scoping hence the repeat, in March, carried out by his trusted colleagues.
If calprotectin tests had not given a meaningful pointer to Crohn’s activity what monitoring regime should we adopt? If you start to feel that Crohn’s is becoming active then we’ll take it from there.
The upper GI professor at East Surrey Hospital had recommended referral to a specialist liver facility “in case a transplant was needed as a result of complications during the cholecystectomy”. My gastroenterologist agreed that this would be a good idea in view of my concurrent conditions although the issue of needing a transplant would be a last resort if something went very wrong. Kings College Hospital would seem to be the best choice and he typed a letter to the Professor suggesting that the referral should go ahead.
Even if I decided not to have surgery at present I would at least be on their radar. If I had another jaundice incident, that needed urgent resolution, they would already be aware of my case.
I asked him to request a repeat Fibroscan to see if the liver cirrhosis had progressed from the previous test in 2013. There was a very long waiting list for this procedure and I couldn’t get an appointment until early September.
Friday 12th May 2017 – Crawley Hospital – Ultrasound Dept.
The follow-up ultrasound scan was an evening appointment at nearby Crawley Hospital. It was a memorable day for the NHS as they fell victim to a worldwide cyber attack that disrupted many of their computer systems. I wasn’t sure if the scan would go ahead but turned up at the allotted time anyway and it was carried out without a hitch.
The report stated: “could suggest chronic cholecystitis” (inflammation of the gallbladder). Dr. Google was divided upon this condition. Some sites declared it serious and in need of treatment straight away; others said that if the patient was asymptomatic then it could be left alone. I rang the professor’s secretary and she organised a follow-up appointment for early July.
Friday 7th July 2017 – East Surrey Hospital – Outpatients Dept.
I was under the impression that, after the first appointment, the professor was going to discuss the case with my doctor, presumably my gastroenterology consultant at GSTT, and would make a direct referral to Kings College Hospital (KCH) Liver Unit. Wrong on both counts. By “doctor” he had meant my GP and the referral would be made through that route after the follow-up scan. I had assumed that the process was already under way.
We left it that a letter would be sent to my GP asking for the necessary arrangements to be made. In addition I thought it might be worth discussing it with my GP, in person, rather than just let the process take its course.
The professor told me that if I had a recurrence of the jaundice or pain in a specific area then I should go straight to our local A&E and they would take the decision on whether to treat me there or transport me to London.
In the meantime I had been recommended an upper GI consultant and surgeon who worked at both St.Thomas’ and KCH. This would be the best of both worlds as he would have access to all my medical notes. I would pass the name and contact details onto my GP.
Tuesday 19th July 2017
My GP rang and agreed that he would put the referral process in motion. He was of the opinion, as I was, that this could have been done hospital to hospital.
I had exercised my patient’s right to choose which NHS hospital I wanted to be referred to and gave him the relevant details of the surgeon at KCH.
Wednesday 20th September 2017 – Guy’s Hospital – Haematology 2
As a precursor to seeing a surgeon I had booked an appointment with Haematology. It was only later that I read their last follow-up letter which said they had discharged me from their care. It was with a certain amount of doubt that I approached the trip to London. Would I be wasting their time?
The waiting room at Guy’s was very quiet. Ominously quiet. Half a dozen patients at most. I had never seen it that deserted. The phlebotomist took blood samples and after a short wait, once the results were available, I was called in by one of the haematologists. I had not met her before and so as the consultation proceeded I needed to fill in some of the details.
I explained that since being discharged a new medical issue had arisen – a bout of jaundice. As a result I would be going to St.Thomas’ to see an upper GI surgeon to discuss having my gallbladder removed. She said that gallbladder removal, by keyhole surgery, was a fairly simple operation. I explained there were other complications and that my local hospital felt unable to cope with them, hence my referral to GSTT. We went through those complications and their history :
Keyhole surgery unlikely – due to previous adhesions/scar tissue
Portal Vein Thrombosis – causing varices to grow
Low Platelets – would need to be over 80 or might need infusion
Liver cirrhosis – biopsy and fibroscan showing mild cirrhosis
Co-ordinating consultants across two hospitals and four departments
As we covered each topic she recorded her recommendations on the eNote system and they would be available for the surgeon to read on Friday. The follow-up letter itself would take a while to be issued.
She concluded that they would need to write up a plan for the surgery and would also refer me to their thrombosis unit to review my case. I came away feeling justified in requesting the appointment. I wanted to be well informed for the coming Friday and felt better equipped with additional questions to ask. Sometimes it can be a danger sounding quite well informed and dropping into the conversation medical terms that consultants use in their own form of polari. You may get the answers back at a level higher than your actual knowledge has reached! I’m never afraid to ask if I don’t understand something.
Friday 22nd September 2017 – St.Thomas’ Hospital – Upper GI Clinic
My second outpatient trip to London in a week and, unlike Wednesday, a beautiful clear morning without a cloud in the sky. I needed to be at St.Thomas’ by nine o’clock to meet with a surgeon. It was an early start and my first waking thought was to wonder if eating a complete can of baked beans for dinner the night before had been such a good preparation for a journey on public transport. A couple of extra loperamide should do the trick.
It wasn’t until I parked my car near the station that I remembered where my mobile ‘phone was – still on the dining room table. Was this going to be a liberating opportunity or a frustrating experience? How was I going to let my wife know what the surgeon had said? How was I going to let my lunch companion know where and when we should meet?
Having spent the train journey pondering this problem I arrived at St.Thomas’ outpatients’ department without having reviewed my list of questions or the copies of the ultrasound scans and follow-up letters I took with me. After a few minutes my name appeared on the laser display board and I made my way to the room indicated.
I had been expecting to meet the surgeon himself but was met by his registrar. I explained to her that I really wanted to see the surgeon and she said she would ensure I could spend a few minutes with him before I left. She started to go through my medical history. To speed up the process I produced the diagram I had drawn showing the key points in 40 years of Crohn’s and its companions (see Chapter 26). She was impressed. No doubt I started beaming like a Cheshire cat but that soon stopped with the next set of questions.
I thought our discussion would centre around whether surgery was a good idea, or not, and the possible complications. She was clearly running through the standard pre-operative assessment checklist: “Are you mobile? Can you wash and dress yourself? Can you manage household chores on your own?” I answered: “Yes” to all the above but of course the answer to the last one was: “No, I can’t. That’s why I got married”. I’m joking! I told her that my preferred option was no surgery until absolutely necessary as it would be too disruptive at present.
We then returned to the detail of my medical history. She examined my abdomen and complimented me on the quality of my scars. It became apparent that surgery wasn’t going to be simple. She went off to see if the surgeon was available, taking the diagram with her. I think they must have then discussed its contents as about 10 minutes later they both returned and the surgeon introduced himself. He also liked my diagram and quickly ran through the key points.
He asked me to describe the circumstances that led me to being there. I recounted the incident of violent shivering and turning yellow at the end of January. He asked if I felt any pain (everyone had asked that one) and I was able to say I felt nothing at all. He was of the same opinion as the professor at East Surrey Hospital that a small gallstone must have temporarily lodged in my bile duct, long enough to cause the symptoms, and then quickly passed through before the pain started.
I went through the discussions we had at my local hospital and the suggestion that I needed to be seen by a specialist liver unit. I wondered why one of their concerns was liver cirrhosis? He replied that whenever a patient appeared with oesophageal varices; portal hypertension; or portal vein thrombosis it would be assumed that liver cirrhosis was the most likely cause. My latest Fibroscan result had shown a value of 7.8 suggesting that cirrhosis was at a low level. I explained the hepatologist’s theory that the PVT had been caused by peritonitis following perforated bowel surgery in 1979. He also thought this was very feasible.
I was now used to being told that gallbladder removal was usually a same day operation using keyhole surgery. In my case, however, it would be a lot more complicated and would need a laparotomy. He noted my wish to delay surgery for as long as possible and was minded to agree with me. He wanted to present my case to their departmental review meeting to get other opinions. In the meantime they would arrange for me to have another MRCP scan. This would determine if any other gallstones were lodged in the bile duct. He asked me to book a further appointment with him for 6 weeks time so we could discuss the results and the meeting’s conclusions.
I had some final questions :
Would a cholecystectomy make my bile acid malabsorption worse? “We simply don’t know.” Am I likely to suffer from post operative ileus (lockdown)? “Possibly”. If we leave surgery until it is absolutely necessary what could the consequences be? “Anything from pain to having to prepare one’s relatives for bad news”. Timescales for elective surgery? “Surgery would be carried out in the specialist Liver Unit at Kings College Hospital so the lead time would depend upon their waiting list”.
I left any further surgical questions for our next meeting. His final action was to introduce me to their senior nurse co-ordinator who acted as a single point of contact for their patients. If I had any questions or concerns then I should call or email him.
….and what of my ‘phone predicament? Don’t bother with BT public telephone boxes – they take your money and then don’t work. When I arrived at St.Thomas’ I explained my problem to the very helpful gentleman behind the Patient Transport desk who took pity and allowed me to use his extension to make the necessary calls after my appointment. What a star!
Not one to waste a trip to London I spent an enjoyable few hours having brunch with a fellow patient and then exploring the Tate Modern and its new extension.
Tuesday 24th October 2017 – Guy’s Hospital – Ultrasound Dept.
My previous MRCP scan was back in 2013. This one was requested by the upper GI surgeon. As before it would produce detailed images of the hepatobiliary and pancreatic systems, including the liver, gallbladder, bile ducts, pancreas and pancreatic duct.
I had requested a copy of report when available but on receipt started to wonder if it had been such a good idea. Phrases such as “there is evidence of progressive portal hypertension with splenomegaly and upper abdominal varices” do not make for good reading to the untutored eye. Something to quiz the doctor about before the endoscopy.
Friday 10th November 2017 – St.Thomas’ Hospital – Upper GI Clinic
I was convinced that the follow-up appointment with the surgeon was scheduled for 10:40am and had arranged to be in East London by one o’clock. When the reminder came through it showed I was an hour adrift. The appointment was booked for an hour later. If the clinic was running late then it could be a rush to get to the other side of London on time.
I arrived early at St.Thomas’ so that I could drop off a sample at the path lab for calprotectin testing and to call into the Endoscopy Unit to ask why they had written to me about booking a procedure which I had already undergone the previous week.
When I arrived at the Outpatients Waiting Area I had calculated that as long as the clinic was running within half an hour of the allotted times I should be OK. The large screen was displaying a message that the clinic was running “approximately 30 minutes late”. My definition of “approximately 30 minutes late” does not stretch to over an hour, which is when my name finally appeared telling me which room to go to.
The surgeon apologised for the delay and for having to face away from me as he read my notes on his PC. He asked how I was feeling. I explained that the ache on my right hand side was still present but was likely to be from scar tissue or adhesions after my ileostomy reversal. He asked if the pain was worse when my bowels were full. Yes it was. He replied that this tied in with my theory.
He ran through the results of the recent MRCP scan. It showed that no further gallstones had made their way into the biliary duct and that there was slight thickening of the gallbladder wall. More worryingly varices had grown around the gallbladder. He explained that this was to be expected due to the blood flow needing to find alternative routes around the clot in my portal vein. The presence of these veins would make potential surgery more hazardous.
They had discussed my case in their multi-disciplinary meeting at St.Thomas’ but there was no clear cut decision on whether surgery should go ahead. He wanted to discuss my case further with his liver specialist colleagues at KCH.
I said that I wasn’t against surgery, per se, but whilst I was feeling fit and generally well I would rather postpone it until absolutely necessary. We went on to discuss the risks of waiting. The major one being a further blockage of the biliary duct which could lead to pancreatitis. That would be serious.
The choices therefore were to operate now to prevent a problem in the future “that might never happen” or to postpone the decision and review again in 6 months time. He was minded to go with this second option and so was I.
In the meantime, were there any measures I should take such as the adoption of a special diet? He replied that this would be appropriate if I was overweight but that was clearly not the case. I also asked whether I should be avoiding alcohol. He said that he didn’t see any need for this providing I did everything in moderation, after all, “life is for living!“
I was given a 6 month follow-up request form to hand in to reception but said if I needed to see him sooner then not to hesitate to call their nurse co-ordinator who would make the necessary arrangements. With that the consultation was over. He shook my hand and said goodbye
I left St.Thomas’ at exactly one o’clock. Big Ben was chiming the hour as I made my way across Westminster Bridge to the tube station. Thirty five minutes later I arrived at the meeting in Whitechapel.
19th December 2017 – St.Thomas’ Hospital – Upper GI Endoscopy
An early afternoon appointment which gave plenty of time beforehand to visit the Royal Academy and do some window shopping in Fortnum & Mason opposite. It was then on to St.Thomas’. I took a seat in the Endoscopy waiting area and watched the boats moving up and down the River Thames. After a while a nurse appeared and explained that they were currently running about 15 minutes late. Four rooms were in operation, each was doing a different type of procedure, some of which were a lot quicker than others. This explained why some patients appeared to be jumping the queue. If only other clinics would keep the patients informed like this.
I was called in by the nurse to run through the safety questionnaire. He gave me a hospital gown and, once I had it on, moved to the inner waiting room. Another nurse appeared to tell me that the Head of Department wanted to carry out my procedure personally and they were waiting for him to arrive.
The next to appear was the registrar who took me into a side room to run through the usual risks of the procedure and get me to sign the consent form. We discussed my various health conditions and I gave her a copy of the MRCP report. I was convinced variceal banding would be needed. “Oh good” she responded, “I enjoy banding“. I pointed out that I would rather avoid the 4 days of “sloppy” food that would necessarily follow.
We discussed my ever worsening splenomegaly and I asked her what could be done to stop me becoming one large spleen on legs. She proposed upping my beta blockers to the next level. I commented that given these other medical conditions, Crohn’s was the least of my worries. She concurred and with that we went into the theatre where the team, and the “top man”, were waiting. He greeted me warmly. We had met before at one of my annual scopings.
Usually just the thought of the xylocaine throat numbing spray makes me gag but this time I was fine. I didn’t even worry about the mouthpiece. Maybe familiarity really did breed contempt. A shot of fentanyl and the next thing I remembered was waking up in Recovery being told by the nurse that I didn’t need banding. An excellent Christmas present again. My escort turned up to accompany me back to the station and I was soon homeward bound.
Valediction? Not quite….
…and that was supposed to be the point at which this book finally ended. There was one burning issue that remained unsolved – the very high calprotectin level with no apparent symptoms or explanation. However, due to a lot of procrastination, something I am very good at, the manuscript stubbornly sat on my computer and went nowhere.
Whilst it languished on the hard drive I entered a new phase of my Crohn’s life and as a result I have written a further two chapters, explaining the new situation and bringing the story up to the end of 2019, over 41 years from diagnosis.