Friday 27th January 2017
At lunchtime I was on my way indoors to get something to eat when I started to feel nauseous. Very nauseous. As I had previously discovered, this is one of the worst feelings you can experience, but then came the shivers. I started to shake violently and uncontrollably. It took me back to the time immediately after the ileostomy when I woke up in Recovery. The solution that day was to be wrapped in a Bair Hugger.
I sat on the sofa for a while and slowly the nausea passed but the shivering continued and my hands and feet were freezing. There was nothing for it but to go to bed with a hot water bottle and the electric blanket on maximum. I finally managed to get to sleep and around five hours later woke up to find all the symptoms gone. At no point had I felt any pain.
The following morning my wife commented that I was starting to turn yellow. That rang alarm bells because it was one of the signs that the hepatologist had said could indicate liver problems. Should I go straight down to my local A&E? I was feeling OK. To be honest the thought of heading for hospital over the weekend did not fill me with enthusiasm and I decided I should go and see my GP first thing Monday morning.
Monday 30th January 2017
I called the surgery and was offered an appointment for late morning. I mucked out the stables and then set off to the doctor’s. The consultation must have lasted 20 minutes and he concluded, that given my medical history, I needed to undergo tests as I looked jaundiced and the only way to get them done urgently was to make my way to A&E. Should I go to East Surrey or up to London? I emailed my consultant at St.Thomas’ for his advice. I received a prompt reply telling me to go to my local A&E.
It would be worth packing an overnight bag, just in case I was kept in. I referred to one of my old blog posts for a checklist of things to take with me.
After lunch I was given a lift to East Surrey Hospital and arrived just before two o’clock. This latest visit would be a chance to witness the much publicised NHS crisis at first hand and to find out what was wrong with me.
I have attended A&E many times, both as patient and, more recently, accompanying others, so already knew that getting treated was going to involve a fair amount of waiting around. That’s why I chose to go unaccompanied.
In the past I have been on edge the whole time, waiting for each stage in the process to start. This time I dealt with it by setting my own “target” times for each step to begin. I could then settle down to my book and would not need to be constantly looking at the clock. If the next step happened before my target, then it was a good result; if it was overdue then that would be the prompt to go and ask someone what was happening. I had already decided that social media would be a good way to record my progress through the system (and to get some sympathy from the IBD community).
When I booked in at reception the indicator board was showing a wait of just over 2 hours to be seen. Each time I glanced up this had increased and I was pleased I had a book with me.
An hour had elapsed when I was called in by the Triage Nurse who went through details of my medical history, current symptoms and medications. When she had sufficient information she walked me through into the main area where I was handed over to an A&E registrar. He took me to a curtained cubicle, inserted a cannula and drew some blood for testing. There were a number of phials and, something I’d not seen before, a couple of bottles for blood cultures.
Once he had sent the samples off for analysis he returned to ask more questions about my medical history. I had taken with me a copy of a simple chart showing the key events from the period 2010 to 2016. He found it useful and added it into my medical file. At four o’clock the first blood results returned. They were fine, it would be the later samples that were of more interest.
The good progress made earlier had lulled me into a false sense of optimism. At six o’clock the A&E registrar told me that I would be kept in overnight so they could carry out an ERCP in the morning. I had been threatened with one of these before but they aren’t performed lightly as there are a number of inherent risks. An NHS leaflet explained that: “they are only carried out when the doctors have carefully balanced the risks of doing this test compared with doing any other test or operations, and the risks of doing nothing”.
I was taken to the CDU (Clinical Decision Unit – a sort of holding ward within A&E) and given a bed. It was a lot quieter there. Since it was an area just for transitory patients there were no overbed entertainment units. I would have to content myself with the book. I decided to stay in my outdoor clothes for the time being. A short while later dinner was served. It was a particularly uninspiring plate of food.
Having resigned myself to staying in overnight it was a surprise when the A&E registrar returned an hour later and said I would shortly be seen by a consultant and could be going home after all. He was doing his best to keep me informed. I explained that I wouldn’t want to be told at eleven o’clock that I was free to go as it would be unfair to expect my sister to pick me up so late.
Despite the best efforts of the CDU nurse it took until ten to eleven to confirm that I would not be seen that night, after all. Very frustrating. I reset my expectations and went to bed. By now I was the only occupant of the four bed ward. What happened to the bed shortage?
The nurse had told me that the morning ward round started at nine so I was expecting to see the Consultant fairly shortly afterwards. A little later I had a call on my mobile ‘phone from my GP to see how I was. I thanked him for ringing and explained that I was still waiting to see a Consultant after 21 hours. I would let him know what happened.
By midday I was still waiting to be seen and frustration was growing by the minute. A nurse told me that a “communication problem” had prevented me being seen the previous evening. Maybe the consultant had been particularly busy. I was hardly a priority case, but a simple message to the CDU would have relieved the situation. The same again that morning. A message saying that the doctor was running late but assuring me I was on their list would have made all the difference. Instead it was down to me to keep chasing. I was told that the Medical Registrar was now, personally, going to deal with my case.
Eventually one of the junior doctors appeared and asked me how I felt. I replied: “forgotten”. We went through my medical history and symptoms again. She would go off and discuss my case with her boss. They would come and see me in the next hour and a half. At this point I could have become very wound up but decided to leave it until I had been there 24 hours from admission.
Still no sign of the consultant. In the meantime I dashed off a few more stress relieving Tweets and started to wonder what the implications of self-discharge would be. I didn’t want to jeopardise any future tests. It was time to find a nurse and ask them to contact the Medical Team. Ten minutes later the junior doctor reappeared with the consultant. He apologised and said I should have been seen that morning and had a blood test. We went through the prognosis. The most likely cause was a gallstone which had blocked part of the biliary tract last Friday but then passed through. The plan was to take a quick blood test and then see a member of the gastroenterology team. This would happen between five and six o’clock. If they were happy then I could go.
Just before the time limit a familiar face appeared. It was my old gastroenterologist who had looked after me between 2000 and 2009. It was good to be reacquainted with him. After a short discussion he said: “you’re too well to be in here. I’m going to discharge you but I want you to have a follow-up blood test and an ultrasound scan at a later date“. He was quite happy for this current episode to be closed out by East Surrey Hospital rather than referring back to St.Thomas’. All that was now stopping me from leaving was the paperwork and he was passing that task to one of his team to complete.
The junior doctor, that I had seen twice already, appeared with the necessary documentation. I put on my outdoor clothes and waited for the nurse to hand over the discharge letter. As ever the NHS nurses were great – friendly, professional and caring. I just wish the communication from the rest of the team had been better. Visiting A&E is a stressful experience for all participants. If communication could be improved then it would be a lot better for everyone.
Monday 20th February 2017 – Guy’s Hospital – Gastroenterology
I wasn’t expecting to find a live violinist in the waiting area. Whilst I applauded the hospital for trying something different and the musician for taking requests from the assembled outpatients, I’m not sure if it helped stress levels. It certainly didn’t help mine as many of the notes were very slightly off key, enough to grate, a lot.
Having been waiting for over an hour a nurse appeared and announced the clinic was running 90 minutes late. Maybe she had made an earlier announcement but was drowned out by the violinist. This was the longest I had ever experienced. When I was finally shown into my consultant’s room, he apologised for the delay and we started working through my list.
The calprotectin result, previously 512, had now risen to 895. I was expecting it to be high as I was starting to feel a certain amount of pain when food passed through my anastomosis and along the transverse colon. We had agreed before Christmas that, dependent upon the calprotectin result, further investigation could be needed. Whilst we had discussed a barium enema, he favoured doing another colonoscopy.
Attention then turned to the MDM review of the last MRI scan and subsequent follow-up letter. We went through it and made sure I understood the medical terms. I was concerned that the mention of “fistulas”, “strictures” and “adhesions” meant only one thing – surgery. He responded that the possibility of fistulas was the most concerning; adhesions were to be expected but he was still struggling to understand the apparent differences between the MRI and what he had physically seen during the last colonoscopy. Strictures should have appeared on the camera.
Was it possible for the Crohn’s to have moved from my small intestine to my colon? He said that it did not usually happen. A repeat colonoscopy would look for this. Would I mind having an audience? In three weeks time they would be hosting a visit for ten overseas gastroenterologists to show how endoscopies were carried out at St.Thomas’. The thought of an audience did not bother me and it meant that I would have the procedure sooner.
If I needed to restart Crohn’s medications what would he recommend? The most likely treatment would be one of the “MABs”, the relatively new biologics that were proving successful. We discussed my previous experience with infliximab and that was duly noted on my medical file. If I needed regular infusions could these be carried out locally rather than needing a trip to London each time? He said they would encourage it but would still keep overall control of my case.
I then recounted my recent trip to A&E with jaundice. The nausea, violent shivering and turning yellow. Along with everyone else he was surprised that during the whole incident I felt no pain.
Had East Surrey liaised with St. Thomas’ and passed on the blood test results? No, there had been no contact. Something for me to chase up when I went there for the ultrasound scan.
I was wondering if the treatment pathways changed with age, for instance for the over 60s. Had any studies been done into the needs of older patients? The main consideration would be the type of drugs used and their effect on an immune system that is weakening with age.
I mentioned that I had not felt well for last 2 days, suffering bouts of having to rush off to the bathroom and I was struggling with the uncertainty that I have mentioned many times before. He suggested that I should finally go and see my GP to arrange a prescription for a bile acid sequestrant so that I had it to hand should I decide to start taking it.
I went off to the Endoscopy Dept to pick up the colonoscopy prep but first they needed a confirmed time and date for the procedure. As it was an ad-hoc arrangement there was nothing on their system. The senior nurse recognised me, as we had met many times before, and was able to help. After a lot of ringing around she managed to sort out the details. Colonoscopy planned for ten o’clock Saturday 11th March. I was given a prescription to take down to the Pharmacy and collected the sachets of Citrafleet.
Tuesday 21st February 2017 – East Surrey Hospital – Ultrasound Scan
In complete contrast to the previous day’s delays I arrived at the Imaging Unit early, waited five minutes, and was then shown into the ultrasound suite.
There was the unexpected luxury of warmed lubricating gel! The scan took around 10 minutes during which I described to the sonographer what I would expect her to see – a large gallstone, first spotted in 2014 and an enlarged spleen. At first the gallstone wasn’t apparent but when she applied the scanning head from a different position it appeared, except it was now a group of small stones. She wanted to see if they were mobile so got me to stand next to the scanner unit and jump up and down. I was pleased I wasn’t asked to do this during a colonoscopy. The stones had moved to the bottom of the gallbladder.
I mentioned that I needed to get a copy of the report sent to my consultant at St.Thomas’. She asked me to return to the waiting area and then brought me a copy to take away.
Saturday 11th March 2017 – St.Thomas’ Hospital – Endoscopy Suite
The day of the scoping arrived. By half past ten I was wrist-banded, cannulated and sent off to change into a pair of the very stylish paper boxer shorts with a velcro flap. Again modesty, and good taste, prevented me from taking a selfie although I now knew which way round the shorts were worn. These were followed by a hospital gown and finally a dressing gown then into the male waiting area until they were ready for me.
Eventually the gastroenterology registrar appeared and went through the procedure. He would start off and then hand over to the lead consultant when the audience joined us via a video link. We agreed I would have minimal sedation as I wanted to be able to watch the images and ask questions.
He lead me down to the procedure room where I was greeted by the nurses. Whilst I was being prepped we discussed the use of azathioprine and potential bone marrow suppression. We also touched on Crohn’s and the link to portal vein thrombosis. I hadn’t realised that patients with active disease are more prone to clots such as DVT. Everything was now ready. The lead consultant came in and introduced himself.
I was asked to adopt a fetal position and, with a liberal handful of KY jelly, the scope started its long journey northwards. The image appeared on a large screen above us. In the bottom left hand corner there was a feature I hadn’t seen before. The consultant referred to it as the “sat nav” and it showed the relative position of the endoscope in the colon.
It was not an easy journey. My sigmoid was tending to loop as the scope attempted to pass through. There was a lot of changing position – lying on my right side, left side or back – and lots of pressure put on my abdomen by one of the nurses pushing firmly downwards. It was also a long journey as the aim was to go a short way into the small intestine past the anastomosis.
In the room next door my regular consultant was acting as chaperone and commentator for the group of international gastros who were witnessing “how we do it” in the UK. The screen on the wall flickered into action and two way communication was established. He briefly outlined my Crohn’s history and I was able to fill in some of the details. He then added that I was one of the most informed patients he knew. If having an audience watch a camera passed up my backside wasn’t enough to make me blush that last remark was. He then explained the MRI issue that needed resolving and called up a copy of the report from my electronic file. In my mind it was all pointing to my 6 years of drugs free remission coming to an end. I had resigned myself to restarting a drug regime and repeat surgery drawing closer.
With great perseverance, and gas to inflate the gut, the scope had reached the rejoin. I wonder whether the distraction of the video link caused me to relax and let the scope pass more easily. From then on the consultant gave a running commentary on what appeared on the screen. It was fascinating and informative. There was a debate between the three gastroenterologists as to which Rutgeerts score they would give my anastomosis. Was it i0, i1 or i2? The conclusion – i0 – no signs of ulceration.
Next they went through the MRI report and the scope was moved to the locations identified to see if any strictures were present. None found. One of the consultants remarked: “Scope 1 – MRI Scan 0“.
One thing that was apparent throughout my gut was a slight reddening, technically called erythema. The scope was zoomed in to examine it and to look for any tell tale signs of active Crohn’s but found nothing. The consultant decided to take a few biopsies. I had never seen this done on previous scopings so watched with a mixture of interest and cringing. What looked like a small crocodile clip appeared from the end of the endoscope and, under voice control, nipped into the wall of my gut. The consultant decided to take a deeper sample so the device went back into the same location and took a further bite. I waited for the pain but nothing, just a small trickle of blood. I later realised that, as I had already discovered with my stoma, there were no nerve endings to feel any pain with.
By now the scope had been in for about 45 minutes and it was finally time for it to be withdrawn. Always a relief. But what about the raised calprotectin level? They would have to come up with a non-Crohn’s explanation for it. The lead consultant bade farewell and I was wheeled out to Recovery. Experience over. When else would you get a chance to listen to three leading gastroenterologists discussing your case and with the evidence in front of your eyes?
Before leaving the unit I was given a copy of the colonoscopy report, which is reproduced below, and includes a possible explanation for the calprotectin result. We would have to wait for the biopsy results to be certain.
This was not a typical colonoscopy. I don’t want to deter anyone from undergoing the similar procedure. There is always the option of more sedation. Usually I suffer no side effects from a scoping but this time I ached a fair amount for the next 24 hours.
Monday 13th March 2017 – off to see my GP to get a prescription for Colesevelam tablets, an alternative to Questran. When I entered the consulting room his words were: “bloody hell, you look well!” I was puzzled at his comment but the reason became clear later.
We discussed the new drug I was requesting. I was expecting to be offered the cheaper alternative that is only available in powder form but is not as well tolerated by patients. He was happy to prescribe both drugs and let me decide which one to take. He went on to review my existing medications. So far so good.
He had been reading my medical record, the last entry of which was the jaundice episode. He had assumed that I was back to see him with a recurrence of the problem, hence his comment. He asked me what the plan was following discharge back at the beginning of February. As far as I was concerned I had undergone a follow-up ultrasound scan and it was now matter closed. Clearly he thought there should have been further action. He was disappointed that I had heard nothing more and said that he would chase it up.
We then had a fairly lengthy discussion about gallstones and cholecystectomy (surgery to remove the gallbladder). That came as a shock. I had gone in to get a prescription and came away with a referral to see a surgeon. Not what I was expecting. The appointment was booked for 3 weeks time
Wednesday 5th April 2017 – East Surrey Hospital – Outpatients Dept.
I hadn’t been to see a surgeon since 2011. It would be with a doctor I hadn’t met before. I knew from experience that much of a first appointment would be taken up with them reading through my medical notes. I thought I might help this process by taking with me the diagram I had been working on that represented my medical history on an A4 sheet. (It is reproduced in Chapter 26 – Loose Ends)
My wife came with me as surgery doesn’t just affect the patient. We were met by the new consultant who turned out to be a professor. He had already read my notes before he called us in so my diagram did not have its intended benefit. I had produced a list of questions based on the BARN principle – Benefits, Alternatives, Risk or do Nothing (or what’s Next?). Our discussion covered many aspects of gallbladders and the biliary system.
What would be the advantage of having my gallbladder removed? No more gallstones and therefore no more associated risks.
What would decide if the operation was keyhole or open surgery? Due to your previous surgery and the likelihood of extensive adhesions it might not be possible to use keyhole techniques. The only way of seeing what adhesions were present would be by inserting a camera into the abdominal cavity. That was the laparoscopy my gastro had mentioned.
What hospital and recovery period would be expected for open surgery? Usually two days in hospital and two weeks recuperation.
I was currently controlling BAM with loperamide, would losing my gallbladder mean starting on Colesevelam? No. It should not affect the current situation.
Would an ERCP be an alternative to surgery? No, that procedure is only suitable for removing stones from ducts once they have left the gallbladder.
Any risks specific to gallbladder removal? There would be the usual risks of surgery but to these must be added – Portal Vein Thrombosis, Cirrhosis, Crohn’s Disease, Bile Acid Malabsorption and Thrombocytopenia.
He was specifically concerned about the low platelets and the chance of losing a large amount of blood during the procedure. He was also worried about potential liver damage and noted that I already had the start of cirrhosis. BAM could actually be helping my condition as there was less bile for recycling.
Given my previous experience could surgery lead to post operative ileus? With keyhole surgery it was unlikely but there was the possibility with open surgery.
What happens if we do nothing? It was finely balanced as to which course of action would be best. As I was asymptomatic and feeling well then maybe this was the best option to choose. Ultimately it would be a joint decision between the consultant and myself.
Could “do nothing” cause long term damage to other organs? If another stone escaped from the gallbladder then the amount of potential damage would depend upon where it came to rest. He drew a simple diagram to illustrate his point. If the stone lodged just below the gallbladder then it could cause it to expand. If it lodged further down the system, at the sphincter where the stomach joins the duodenum, then it could cause cholangitis (inflammation of the biliary ducts) and/or pancreatitis (inflammation of the pancreas). Both would be very serious conditions.
What would the warning signs be? Pain in the right side, possibly stretching up to the shoulder. Skin and whites of eyes turning yellow. Usually the pain would be severe which is why it was so strange that I felt nothing during my recent jaundice attack.
Where do we go from here? He put in a request for a further ultrasound scan but would be recommending that I was referred to a hospital with a dedicated, specialist liver unit due to his concerns about the operation, for instance needing a liver transplant if things went badly wrong! I asked him to discuss this with my gastroenterology consultant at St. Thomas’ Hospital.
In future I should try to avoid fatty or spicy foods as these could cause the gallbladder to contract which might, in turn, expel a stone into the ducts.
When I returned home I emailed my consultant at St. Thomas’ to give him an update on the situation and explain about being referred to a dedicated liver unit. I also asked if the results of the recent biopsies taken during the colonoscopy were available and whether my liver stiffness should be retested.
There would be a lot to discuss at forthcoming appointments and as a result of those conversations I could well end up back on the operating table.
Maybe it’s being slightly over dramatic but it felt like I was now carrying a second time bomb along with the varices. If they burst or another gallstone became stuck in the wrong place then it would require emergency hospital admission and the decision on surgery could well be out of my hands.
…and to cap it all those words “liver transplant” were back on the agenda.