Follow-up letters from appointments are an important part of your health records. They should contain what was discussed with your consultant, any conclusions arrived at or changes in medication etc. By default Guy’s and St.Thomas’ write to your GP after each appointment and copy in the patient under cover of a note that states “this is primarily a communication between medical professionals” (which I think is another way of saying “you probably won’t understand all the words we use”).
Now it has to be said that not all Departments stick to the “default” and I have had a couple of occasions (both with the same department) where the lack of letters caused issues. This is where my blog posts recording the latest appointment have proved more than just an exercise in self indulgence and why I read them prior to my next hospital visit.
The first time this happened was in March 2013 when I attended a regular appointment and was greeted by a doctor I hadn’t met before. We went into one of the side rooms where my notes were open on the desk. He introduced himself and said that he had been reading the notes to familiarise himself with my case. I had been hoping to see my usual consultant as I liked continuity and had issues with the lack of follow-up letters that I needed to raise with them. Unfortunately they were unavailable for that day’s clinic.
The new doctor said that, having read my notes, it was apparent that the condition I was suffering from was rare and started to discuss my low platelets. He noted that I had last been seen in October 2012. I stopped him in his tracks and said this was a clear reason why up-to-date notes and follow-up letters were so vital. There had been two further appointments since October and the platelet issue had been “parked”. A new, far more serious, condition had arisen – PVT (Portal Vein Thrombosis). This was now the priority.
I explained that this was an important appointment for me as I was expecting to run through my risk profile and at the end of it make the decision on whether to start blood thinners. My regular consultant had said they would discuss my case with th Department’s Warfarin expert, one of the professors.
At that point I started to think that this was all going to end up badly. I needed to kick start a reaction so I asked whether the professor was in the unit that day and what I needed to do to see her. Clearly this was never going to happen but it was worth a try! The doctor said that he would see if he could speak to my original consultant.
A few minutes later he returned with another consultant. I recognised her name as my clinic letters always stated that I was under her ultimate care. Putting two and two together she must have been the next one up the food chain from the doctor I usually saw. I went back over my expectations from this consultation. She explained that she worked closely with the “Warfarin Professor” and they jointly reviewed patients.
She ran through the risk factors and having looked at my notes and results, on balance, she would not recommend Warfarin yet. As far I was concerned it was the “right” answer. If there was a low risk of clotting then I was prepared to take that risk to avoid having starting yet another medication. Decision made, no Warfarin.
A month later I was still awaiting the missing follow-up letters. Time for some further action. I sent an email to the head of department (whose address I found on their web page). I apologised for contacting her directly but explained that raising the issue in clinic was having no effect. I added: “I thought it was therefore best to go straight to the top so that you can delegate any necessary actions…….” and briefly explained what had happened at my last appointment.
I hit the send button and got a very prompt response, 20 minutes later, apologising and saying it would be looked into.
The four missing letters arrived shortly afterwards, with an apology. I checked their contents against my blog and they were accurate records of the appointments.
From the above I’d like to pass on two thoughts : 1) that keeping your own record is important and can prevent a waste of your time and a waste of NHS resources going over old issues that are already “parked”; 2) if you are having a problem with getting follow-up letters then go to the top and ask for their help. I have found those four little words “can you help me?” have opened up many situations whilst negotiating the pathway s through the NHS.
(I’ll leave the account of the second missing letter issue for another time. Suffice to say that I could have ended up having a third bone marrow biopsy! Not something I would recommend)
I had a colonoscopy a few days ago, the first one in five years. I’d forgotten the detail of what was involved probably because, in the meantime, I’ve had seven gastroscopies which do not require any preparation but are done under sedation.
If you’re reading this then I’m guessing you’ve either had a colonoscopy and want to know if your experience was similar to mine or you’re about to have one and are looking for some information on what it is like from a patient’s perspective.
First, the bad news. A couple of years ago I ran a quick poll on Facebook asking which of the tests IBD patients rated as the worst. Of the 700 responses almost 70% chose a colonoscopy. For the remainder it was mainly the dislike of having an MRI scan.
There is no disguising the fact that the colonoscopy is widely despised by patients and I wonder how many, with digestive problems, put off seeing their GP because they do not want to undergo this procedure. Unfortunately there are no alternative ways of taking biopsies in the gut but for some monitoring activities there is light at the end of the tunnel. More of that later.
The colonoscopy experience can be broken down into 4 acts – fasting, preparation, scoping and recovery. How does this work in practice? Let me use my recent experience to illustrate.
Act 1 – Fasting – started with a fibre free diet 3 days out. The following day I was allowed a light breakfast then liquids only until after the procedure. On the last occasion I made myself a mug of Marmite dissolved in hot water. It was disgusting and turns my stomach just thinking about it. Suggested alternatives were Bovril or an OXO cube. I tried a “vegan, beef favoured” OXO cube in hot water and took the first sip with some trepidation. To my surprise, it was very tasty. I have struggled with fasting in the past but this time it was fine.
Act 2 – Preparation – the dreaded purging liquid that many find the worst part of the whole procedure. There are three common brands – KleanPrep, MoviPrep and Citrafleet/Picolax – and they are taken in 2 doses. The most obvious difference is in the amount of liquid you mix up. KleanPrep requires 2 x 2 litres; MoviPrep requires 2 x 1 litre; Citrafleet/Picolax only requires 2 x 150ml.
There are medical reasons for using different types, for instance the ones requiring higher volumes of liquid are less likely to affect your kidney function. Luckily at GSTT the standard issue is Citrafleet. At 4pm I swallowed 4 senna tablets and an hour later downed the first 150ml of prep. Previously it had taken effect very quickly and I had not strayed far from the bathroom. This time the hours passed before….well you can guess!
Five years ago you would take the second dose of prep later that evening but then the instructions changed to taking it on the day of the procedure. I am very sceptical about this. I have a 90 minute journey from home to hospital, mostly on public transport, and the last thing I want is to still have anything left in my gut. As a compromise I got up very early in the morning and downed the second dose ready for the procedure that afternoon. Had my appointment been in the morning then I would have taken the dose late the previous day and put up with a disturbed night.
Let’s talk about sedation for a moment…
Sedation is commonly a cocktail of midazolam and fentanyl. I’ve heard the former described as the “vallium” of the mixture and it has memory suppressing qualities similar to rohypnol; fentanyl is the painkiller but also enhances the effect of the midazolam. The best way to describe the effect is, to borrow from Pink Floyd, you are comfortably numb but sufficiently conscious to respond to the endoscopist’s requests to adjust your body position as required.
Sedation has implications. If you choose that option you will need someone to escort you home and you are not allowed to drive for 24 hours as your insurance would be invalid.
I had looked back at old colonoscopy reports. They all showed sedation and yet I remembered coming home without supervision on at least one occasion. Putting two and two together I concluded that I would not need an escort so didn’t organise one. When I re-read the appointment instructions it clearly stated no escort, no sedation. That left me in a quandary. The options – find an escort or have no sedation or cancel the procedure. I decided to ask the IBD community on Twitter if no sedation was an option I should consider. I was inundated with responses ranging from “of course you need it” to “you’ll be fine without it”.
In another poll, this time on Twitter, patients were asked about their sedation preferences. Nearly 500 responded of which 80% chose sedation; 9% no sedation; 7% said it depended upon their disease activity; and the final 4% said it depended who was carrying out the procedure.
I Tweeted that I had not managed to organise an escort, half hoping that someone might be able to help but I thought it was probably a forlorn hope. I was delighted to get many replies from patients and non-patients saying that if they were based in London they would help. Even more heartening two people actually offered to act as my escort. The wonder of social media! I made contact with one of those who had replied and she was very happy to assist.
The week before the colonoscopy I happened to have a tele-appointment with my gastro consultant. He would also be driving the scope. I told him of my dilemma and he said that I would be fine with just “gas and air” (Entonox) and that he would go very carefully. That made my mind up – no sedation and therefore no escort.
On the day of the procedure I set off for London early so that I could take some photos of the River Thames before my own, internal, photo session……
Act 3 – Scoping – having found the Endoscopy Suite, despite the lack of signage, I was greeted by the receptionist. “Hello sweetheart, what’s your name?” Once signed in a nurse showed me to a cubicle and gave me two surgical gowns, some hospital socks and a pair of “modesty” shorts. After running through a checklist he took my blood pressure and I took a COVID LFT. He left me whilst I changed into the hospital clothes. The modesty shorts have an opening at the back. On a previous occasion I had managed to put them on the wrong way round and they had proved to be anything but modest.
At this point, if I had opted for sadation, the nurse would have inserted a cannula (and I would have obeyed the second law of cannulation that you must take a photo and post it on SoMe). A few minutes later my consultant appeared, ran through the potential risks and I signed the consent form. With that completed he led me to the procedure room. The nurses introduced themselves and I lay down on the trolley. One of the nurses showed me how to use the Entonox. It is delivered via a mouthpiece and if you feel any discomfort you take a few deep breaths to mask it.
I rolled over onto my left side and drew my knees up. The monitor was showing my heart rate as 65 bpm. With the camera inserted it was an easy run until the sharp bend (splenic flexure) was reached. That is where the skill of the endoscopist really comes into play. I was asked to roll onto my back. Air is used to inflate the gut and make the passage of the camera easier. Every so often a water spray is deployed to clean the lens or flush any debris that the prep solution didn’t dislodge.
Being wide awake I was able to watch the whole procedure and ask what we were seeing. On screen there is a small “satnav” window that shows the 3D position of the endoscope. There was some very mild inflammation in the colon but “nothing that needed treating or to worry about and your last calprotectin was 37. I’ll take a few biopsies on the way out”.
I used my time to ask questions. One in particular I was keen to know the answer to. When I had a stoma I had been surprised that this thing, part of my intestine, that was sticking through my abdominal wall, was impervious to touch. It had been explained to me that the gut has no nerves so I asked if this was true. Yes, it was. If there were nerves in the gut you would feel every piece of food passing through it. That made sense. The question I should have asked, of course, was how does the inflammation square with the low calprotectin score.
The camera made its way ever onwards. There were a few difficult manoeuvres that required withdrawing a few centimetres and then re-orientating it with the assistance of the 3D image. The camera reached just beyond my anastomosis – the surgical join between my small and large intestines – made easier as my ileocaecal valve and terminal ileum were removed in 2010.
“You can tell we’ve now entered the small intestine as the walls have a different structure and that is how food is absorbed.”
Time for the camera to be withdrawn and the biopsies taken. I had never considered how the biopsy samples got from the gut into phials ready to go to the lab. Being fully awake allowed me to watch the process. The endoscope tube has a cavity through it that allows a separate instrument, with a pair of small forceps on the end, to be pushed out beyond the scope. The tool takes a biopsy from the gut wall, directed by the endoscopist, and then one of the assistants withdraws the tool and retrieves the sample. The tool is then re-introduced through the endoscope and the process repeated.
Watching the grab collecting samples is slightly disconcerting as you expect to feel it and there is a small trickle of blood at each location but no nerves, no feelings. After a dozen biopsies had been taken the procedure was over. I had hardly used the Entonox and will choose the no sedation option for future colonoscopies. The results would be ready in two weeks time. My consultant asked me to email him at that point. I wonder if the results will explain my calprotectin question?
My Twitter conversation about the advisability of not having sedation had reached him and he had done some research. Looking through the records he found that I had a colonoscopy in 2015 without sedation. That explained why I recalled not needing an escort.
The final discussion before leaving the procedure room was about alternatives to having a colonoscopy. My consultant said that when biopsies are not needed then ultrasound was looking promising and that its use was taught as standard in some countries but not UK. Let’s hope that changes.
Act 4 – Recovery – if you have had sedation then you will be taken in to a recovery area until you have regained full consciousness and have changed out of the hospital clothes. Your escort will be told you are ready for collection. Before you leave the cannula is removed and you will be given a copy of the colonoscopy report. My report showed that the prep was “excellent”. It concluded with a series of “IBD Scores”. The only one that wasn’t zero was the SES-CD (Simple Endoscopic Score for Crohn’s Disease). The score was 3 which equates to “mild endoscopic activity” and is the lowest of the scores after “remission”.
There may be after effects, one of the commonest being discomfort caused by the inflation of the gut. I didn’t notice any of this. Another issue is that the prep has decimated your gut microbiome and this takes time to re-establish. After a week I’m still not convinced is has returned to normal. I have been taking a pro-biotic yogurt to try and help the process along.
The colonoscopy experience was over.
UPDATE: I contacted my consultant for the biopsy results. “Biopsies of colon totally normal… consistent with calprotectin…..”
The next performance was a gastroscopy (an Upper GI endoscopy) one week later but I can’t tell you a lot about that as I was away with the fairies. Thank you midazolam and fentanyl……and my escort.
Final thoughts – for those about to have their first colonoscopy I would suggest that you arrange an escort and opt for sedation. It can make the procedure a lot less stressful. If you subsequently become an “old hand” at scoping you may want to review your options.
I think we have all felt embarrassed about where they are going to stick that camera but I try to remember that the Endoscopy team will have seen it all before. It is a routine procedure that they carry out multiple times a day. When it is your turn I hope it all goes well.
This was written long before the advent of COVID19. You may well be restricted as to the physical items you are allowed to take in with you. Please check with the hospital.
I had been meaning to do this for a while. I compiled my list of ten things I learned would make life easier during my more recent stays in hospital (UK NHS – 2 bowel operations; 1 emergency admission with 2 weeks recovery). I wanted to pass them on in case it helps to improve your “end user” or “patient” experience. I reckoned that if you were already an old hand at the hospital game you could, no doubt, add at least another ten so I posted the link to this list on the Crohn’s Forum (www.crohnsforum.com) and some “old hands” got in touch with “at least another ten” items for adding. Thank you – xxSophiex, IHurt, CDJ, UnXmas, acc929, SickofCrohns.
Here’s the updated version which has now grown from 10 to 18. I’m not suggesting you take all the physical items listed below with you in one go. I’d go for a phased introduction as your recovery progresses.
One possible risk to bear in mind is not being able to keep your expensive technology securely whilst you’re in hospital. The wards I’ve been on have discouraged the bringing of valuables into hospital for this reason but realistically everyone will want their mobile phone with them. The ideal solution would be for each bed to have a patient lockable drawer/cupboard but I’ve never seen one in the NHS. There may be a ward safe that you can ask for valuables to be stored in but the nurses won’t thank you for wanting access several times a day.
No.1 MOBILE PHONE – it goes without saying that you will have your phone with you but not so long ago you weren’t allowed to use them on the wards. There may still be restrictions in certain sensitive areas. Don’t forget your charger!!!
No.2 HEADPHONES – there are lots of times when you really want to be able to drown out the surrounding ward noise. Take in an iPod, or similar device, and a pair of headphones. Preferably two pairs – in ear and over ear. Over ear will give you the best isolation from the ward noises but you can’t comfortably lie on one side with them on and your ears tend to get hot! The in-ear ones aren’t as good for keeping out external sounds but you have more choice in your sleeping position. (If your budget stretches to it then a good pair of noise cancelling ones would probably be a good idea).
No.3 EYE MASK – like the ones you have for air travel. It’s very rare to have all the lights off in a ward and even if they are, the nurses will be frequently checking on the more poorly patients so the over bed spotlights will be going on and off throughout the night. That’s where the mask comes into its own.
I haven’t actually tried a mask so have found the best time for dosing is during the mid-morning lull. That’s the bit between the doctors doing their ward round; the beds being made ward round ; having a shower and then lunch being served.
No.4 SHOWER GEL/SHAMPOO – sometimes these are available in the hospital but there’s nothing like having your own, favourite brand to keep you in touch with home. It’s said that smell is the strongest sense for recalling memories. There is one particular shower gel that I bought ready to go into St.Thomas’ and I’m still using that “flavour” today. Every time I catch that fragrance it immediately transports me back to the first shower I had post operation, a happy time despite the surroundings.
No.5 SOCIAL MEDIA – if you want to keep in touch with the outside world using SoMe then you’ll probably use your phone but if you are trying to write any lengthy items a smart phone can be limiting due to the screen size. I suppose the ultimate is to take your laptop but it’s quite a large item to store safely in a bedside locker so an iPad is a good compromise.
When I knew I would be going in to St.Thomas’ in October 2010 I bought a basic iPad and a wi-fi hub at that has kept me blogging throughout my hospital stays.
No.6 PYJAMAS AND DRESSING GOWN – the admission instructions may ask you to bring in your night clothes but I have found that pyjamas are usually available anyway. That’s fine if you’re not fussed about the colour. After my reversal operation I was issued with bright orange pyjamas so it looked like I had just escaped from Guantanamo Bay. I try and use NHS pyjamas for a few days after an operation in order to give anything that might be oozing a chance to stop oozing and then it’s into my very stylish M and S ones for the rest of the stay.
The dressing gown is a must. Not only can it give you a bit of extra warmth when sitting about but also covers up that embarrassing gap up the back of your medical gown where you haven’t quite managed to do the tie-ups.
No.7 BOOKS AND MAGAZINES – there will be times when you’re not dozing but you really don’t want to watch the truly appalling daytime TV so a decent book or some magazines, preferably with lots of photos and no difficult text, are a good way to pass the time. I was given a volume of Sherlock Holmes short stories and found that each story was just the right length to read before needing a rest.
No.8 CASH – taking a large amount in with you is not a good idea but it is worth having, say, ten pounds in case you want to buy a magazine or some toileteries from the trolley that visits the ward every couple of days. I expect everything is now contactless anyway
No.9 MAKE-UP – I’m a bit out of my depth here because I’ve never worn make-up,. I’ll quote directly what acc929 said : “ I think this is probably a bit more on the girly end of things, but I’ve found that taking good care of myself (when possible of course) in hospital helps keep my morale up. I think the sicker you look, the sicker you feel, so if you have the energy it’s worth making a little effort. I bring my nice robe so I don’t need to wear the hospital gown, my favourite perfume, and my own shower stuff in little bottles. I bring a tiny bit of make up so that when people visit I don’t need to deal with them telling me how tired I look (I’m in the hospital, duh!) Bottom line, having your own things makes everything feel better.”
No.10 FAVOURITE SNACKS – after an operation or maybe a bad flare-up you may need something to help you get your appetite back. If you have some favourite snacks or chocolate bars etc. pack a few in your bag. Some hospitals have will provide snacks anyway but I don’t know how common it is. The two wards I spent time in at St.Thomas’ always had a good selection freely available. You only had to ask!
No.11 SANITISING WIPES – with all the nasty infections that appear in hospitals nowadays – such as Mrs.A – sanitizing wipes to wipe down any surfaces or objects that you can’t be certain have been throroughly cleaned or disinfected. (May have been superceded by COVID precautions)
No.12 HAND CREAM AND LIP BALM – the atmosphere in the wards is often very dry so creams and balms will help you keep your skin feeling good.
No.13 LISTS – pen and paper – or you could use an app on your phone or tablet. I have always found it useful to write down any questions I want to ask the consultants on their ward rounds. I’ve tried keeping a list in my head but when you are confronted by the consultant and a gaggle of junior doctors, early in the morning, it’s easy for all thoughts to just disappear.
No.14 PAIN – if you start feeling pain or a different pain don’t be brave and keep it to yourself TELL THE NURSE. It may be nothing and you can be given painkillers to help. On the other hand it could be something that needs attention and the sooner that attention starts the better.
No.15 INHIBITIONS – try and lose any inhibitions you may have about discussing the more intimate details of your condition with the medical staff. You may notice something different about your body or what comes out of it. Again it may be nothing or it might need further attention.
No.16 CANNULAS – if you have to have a cannula and, let’s face it, it’s pretty much a certainty, don’t let a doctor put it in. No matter how much practice they claim to have had they are never, ever, as good as an experienced nurse. In the past I have actually said to a doctor ‘”Are you sure you are good at inserting these?”. He assured me that he was but an hour later I had to have it redone as there was insufficient flow through it. This has happened on several occasions so I stand by my “never trust a doctor with a cannula” statement. The positioning of the cannula is governed by where a good vein can be found but if at all possible try and avoid having it on the bend of the arm as you will frequently be interrupting the flow when you move your arm. If you get a choice of which arm to put it in remember you will have eat meals and manage in the bathroom with it connected.
No.17 PHARMACISTS – when it’s time to be discharged I can guarantee that you will be ready to go but will then have to wait several hours whilst pharmacy get the correct medications up to the Ward and you can finally leave. If you make friends with pharmacist on their daily ward rounds you can preempt that wait my persuading them to make sure the necessary tablets, in the correct numbers, are in your bedside locker ready for discharge.
If you live near the hospital you may be able to go home and then get someone to return later to pick up your medication. You may even find that you’re being prescribed over-the-counter tablets anyway, such as paracetamol or Ibuprofen, so it would be quicker to go into your chemist.
No.18 SENSE OF HUMOUR/COURTESY – not always easy to keep hold of this when you’re drugged up to the eyeballs, have got tubes coming out of every orifice and your future is uncertain but if you can do your best to keep your sense of humour and treat the doctors, nurses and other patients with courtesy then it will make your stay a lot more bearable. Of course you may be one of those unlucky individuals who has had a humour bypass in which case you should get on well with some of the doctors I’ve met! That’s the revised Top Twenty One. If I had to choose just one physical item to take in with me it would still be the headphones as they give you the chance of getting some sleep in a noisy environment. The one behaviour I would adopt is a combination of the above but can be summed up as “acceptance that a hospital regime will probably be completely alien to your usual way of life but you do not need to lose your sense of dignity, humour or courtesy”. If you feel any of these are being compromised – complain.
I’m not an emotional person. I don’t know whether it is simply the way I’m made or that I had any emotion knocked out of me as a defence mechanism to cope with the early death of my father. In some ways this lack of emotion may have helped me survive those challenging experiences and gory sights I mentioned earlier. So I was surprised that, when researching my book, I became quite emotional when reading the account of a meeting with one of my surgeons shortly after my ileostomy. It still has the affect to this day.
“He remarked how well I looked considering: “what they had done to me”. He had joined his old colleagues at St.Thomas’ on the day to take part in the operation which he described as a “classic”. He said it was one of the most complex they had ever carried out. My innards were in a really bad way.
He had a trainee doctor in with him for the clinic and was showing her my pre-operative CT scan. He described it as looking like an octopus. Where had I heard that before? My intestines had, in places, attached themselves to other parts of the body such as the back muscles. That last comment was quite a revelation and would explain the back pain that I had been suffering from for the last couple of years. I dread to think what would have happened if the surgery hadn’t been carried out when it was.”
I’ve tried analysing what triggers these feelings but had not been able to reach a conclusion. Then I heard this. Maybe this explains why…..
Adrian Chiles was interviewing the radio presenter Mark Radcliff about the cancer he had been treated for. Here is part of what he said “I took a little bit of counselling at the Maggie Centre ….I’m not someone who cries a lot but when I went into theCentre the woman, who was counselling me, asked ‘So what point are you up to?’ and I just burst into tears. She said ‘Have you just finished your treatment?’ It’s a very common thing at that point. You realise the struggle you’ve really been through. It dawns on you.”
Maybe it dawned on me just what my mind and body went through and come out the other side smiling and with a very positive view of the future. Do other IBD patients experienced similar emotions?
After writing this post I was discussing coping with Crohn’s Disease with my wife and mentioned my theory that a lack of emotion might just have helped me deal with it. She genuinely surprised me by saying that if she had Crohn’s she “wouldn’t want to have gone on” due to the embarrassment of the tests and procedures we undergo, the stress of being taken short and the pain we experience. It brought home to me how differently each of us can react to this disease.
….and the tired? Two doses of Vedolizumab may be the cause of additional fatigue
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.
This image gained some interest when I posted it on Twitter so I thought I would explain it’s genesis. From the outset I wish to make it clear that it is my solution to my specific needs. I’m not proposing it as a universal solution for quick access to medical information, more a stimulus for further thinking and discussion. (I’m also not claiming this as an original idea – there is at least one patient in USA who did it first)
In February 2017 I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history and medication.
Next I saw an A&E Registrar. He asked the same questions but what would he have concluded if I hadn’t been able to fill in the details? He would have been confronted with a patient with a large scar up the midline, the hint of a stoma location and an appendectomy incision. He wouldn’t have known why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that : I have Crohn’s disease; the attempt to remove my appendix had been aborted; I have Portal Vein Thrombosis resulting in additional veins growing in my esophagus (varices) and around by gallbladder; that my spleen is enlarged; or that the low platelet count is now normal for me. Valuable time could have been lost trying to investigate the problems that were already known about and being treated.
Do It Yourself
As a result of my A&E visit I wondered if there was a standard, minimum set of data that should be available? Was there a standard format for the data? I searched the internet and could find nothing. A good starting point would therefore be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.
There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. 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 appear to be US based only and the data held was not in sufficient detail. How feasible would it be to produce a standalone, wearable device?
First attempt – using a USB bracelet. First task – decide upon data and format. I settled on two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents were stored as pdf files and linked to various back-up documents such as laboratory or histological reports.
There were two problems :
The format of the data was such that it would still require a fair amount of time to wade through and understand the aetiology of ,and relationships between, the various LTCs. This was solvable but the second issue would be insurmountable.
In order to protect the system from viruses it is unlikely any NHS computer would allow the reading of an external USB stick. Time for a rethink.
Back to the Drawing Board
A couple of years ago I drew a diagram to try and understand the aetiology/relationships that I mentioned above. I used the metaphor of a jigsaw as that is how my health appears to me. The penny then dropped that it would be a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This illustration shows an early version of the drawing.
…and then someone set me the challenge of making an interactive version that would open up the relevant documents or test results when you click on an element of the diagram. This would make the ideal interface for my medical record.
To get over the USB security problem I settled on holding the data on a server and then accessing it via a QR code. Initially I thought of using a dog tag style SOS pendant with the code engraved on it but I have yet to find a company that can do this as a one-off at a reasonable price. I could use a conventional SOS bracelet with a printed QR code inside but why not try a tattoo?
I didn’t want a permanent tattoo as it would not allow for any future changes. I opted to try making a temporary one using those kits that are readily available online. After a couple of false starts, mainly due to not reading the instructions carefully (it’s a man thing), I had a readable QR code tattoo. Where to stick it? The ideal position would be somewhere that is not generally visible but would be seen by an HCP. I chose the inside of my forearm, just above the wrist. Anyone looking to insert a cannula would be bound to see this and hopefully use a phone or tablet to scan the code.
(I’m counting on the HCP having the curiosity to try the link and once opened realise the importance of the information available. You could call this a “leap of faith”)
Life would be so much easier if the NHS had a universally accessible records system that held all our medical details, linked to our unique NHS patient number (only needs a simple, unchanging tattoo). I can’t see that happening in my lifetime given the success of previous attempts.
Clearly I have no issues about the confidentiality of my medical data or I wouldn’t be writing/publishing this post. I know that many patients do and this needs to be taken into account. I am willing to trade confidentiality for the speed at which my medical record could be read should I be involved in an emergency.
Meet The Surgeon – Friday 8th March 2019 – a visit to St.Thomas’ to see the upper GI surgeon. A surprisingly lovely day and a chance to do some serious walking along the South Bank of the River Thames.
Last time I saw him we discussed removing my gallbladder and had agreed to put it on hold until absolutely necessary. I had asked for this new appointment to discuss the pain I’ve been experiencing in my right hand side. I wondered if it was connected to my gallbladder (or scar tissue; or Crohns inflammation; or something else). He had a good prod around and was able to pinpoint the exact centre of the ache. (I knew he had found it as when he applied a fair degree of pressure, it hurt)
“You have a small hernia. Usually we would offer you a short operation to repair it but given your history I doubt whether we should consider it“. The history he was referring to was the growth of new blood vessels in my abdomen due to PVT (Portal Vein Thrombosis). The vessels grew to relieve the pressure caused by the blocked portal vein.
I could now understand and visualise the pain. So much easier to deal with. Should I change my lifestyle? “No, carry on as before but if it gets worse then we will have to revisit the situation. You’ve got our contact number”. Should I consider wearing a support belt (as I had done when I had a stoma? “If you feel it helps“.
One Day My Prints Will Come
I mentioned that I had not yet seen the capsule endoscopy report from last November. He called it up on screen. No wonder they were having difficulties printing it. It comprised page after page of stills from the 12 hr video. There was however a summary page and I was surprised to find that it reported active inflammation in the proximal (top end of the) small bowel and a little further down as well. The far end (site of my anastomosis) was clear.
On the train home from London I thought more about why I was surprised and concluded that I really shouldn’t be. Colonoscopies always showed no inflammation; upper GI endoscopies showed the same. It was only the elevated calprotectin level that suggested anything was wrong. If that level wasn’t a false positive then the problem had to be somewhere between the duodenum and the terminal ileum. The last small bowel MRI scan had mentioned the possibility of inflammation. Despite this, physically, I felt nothing and still don’t. My digestive system is working as it should.
The Bleeding Clinic – Wednesday 13th March 2019 – off to Guy’s to see the haematologist in the Haemophilia Clinic……but my questions were all to do with general haematology.
My Hb has been consistently low for a while and I’ve been taking Ferrous Fumarate for over 5 years. My GP had then upped my dose to two tablets/day. I thought this was considered to be a short term measure. Would an iron infusion be more effective? The haematologist looked at my last blood test results. He agreed that the Hb was low and so were my white blood cells. Another bone marrow biopsy would be worthwhile to check for any changes since 2013.
I mentioned that there was a proposal that I should start Vedolizumab. Did my pre-existing conditions of thrombocytopenia (low platelets) and PVT (Portal Vein Thrombosis) need be considered? He consulted the online medication “bible” and said that Vedo was gut specific and should not interact with the other conditions.
He would book another appointment with the general Haematology clinic but in the meantime he would get me to provide blood and urine samples. I explained that the IBD Dept. required, and had already requested, specific blood tests. Would it be possible to get these done at the same time? Yes it would and so it was off to see the phlebotomist who removed nine full phials of blood (my previous record being seven).
…then off to visit the new public roof garden before getting lunch
Next steps – off to see my gastroenterologist on 15th April
It started with a routine calprotectin test in November 2015. The result came back at just over 100, which equates to “mildly elevated”. Subsequent tests continued the upward trend. A graph (I do love a good graph) is the best way to show the issue.
To try and explain this ever rising trend I underwent a number of MRIs and colonoscopies but nothing untoward was seen and my gastros were stumped. Life continued as usual and my remission appeared to be continuing despite the confusing calpro figures. Could there have been something causing a false positive reading? I set about trying to find a plausible answer (that didn’t involve inflammation) but without success. In the meantime I was wondering why my Hb level was on the low side. Cue another graph…
It wasn’t until late 2018 that I went to see my gastro again, ostensibly to discuss the Hb level and a recent bout of “bathroom dashes”. Was it time to re-investigate the calprotectin issue. There was one section of my gut that hadn’t been seen by camera, namely the small bowel between duodenum and the anastomosis site (where my terminal ileum had been). I was booked in for a capsule endoscopy on 18th November. The full description of the procedure and the wait for the results can be found here (opens in a new window) – https://www.wrestlingtheoctopus.com/fantastic-voyage/ .
When the report was finally available my consultant emailed me to say that “there is some inflammation in the small bowel – it’s not terrible but it must be the source of the calprotectin. I think it is probably enough to warrant treatment which we should discuss. Shall I arrange an appointment?” Yes, that would be a good idea. The date has come through for mid-April. A few more weeks wait before finding out the way ahead….
Then, last Thursday, I was rather surprised to get a phonecall from one of the IBD nurses. She told me that it had been decided, at the weekly virtual clinic (which I think must be like an MDT), to start me on Vedolizumab and they needed to book me in for a blood test and chest x-ray prior to my first infusion. I explained that this would be a major decision, as I had been Crohn’s drugs free for several years. My preferred option was to stay that way. I would want to discuss any new drug/treatment, at the forthcoming gastro appointment, prior to starting. (I have subsequently had an email from my consultant agreeing with this course of action. It appears that the IBD nurses had been very efficient in trying to arrange approval for the drug prior to the appointment)
I’m now in a position that many other patients are confronted with – the end of remission. I’ve written many times about maintaining a laid back, positive attitude. Now my bluff is being called and I need to prove to myself that I can continue being calm and unstressed about my health. So far so good. If my quality of life was being seriously compromised and I was unable to function properly then the decision to restart medication would be a simple one…..but it isn’t apart from…..
….an ache in my right hand side (URQ). It’s more annoying than being anywhere near painkiller territory. What could be causing it? As with most things #IBD related there is always a high degree of uncertainty. I consider this to be one of the major psychological burdens we bear.
I’m currently testing an IBD Self Help programme. It is broken down into modules which are completed over a number of weeks. I haven’t reached the “Pain” section yet so I’ve been relying on the old technique of visulaising the pain in an attempt to lessen its impact. That’s easier to do if you know there is only one cause but in my case it could be : the recurrence of the old ache around my anastomosis due to adhesions/scar tissue; gallstones; getting the balance of Loperamide/Colesevelam wrong; or the new kid on the block – inflammation. (“New” may be an incorrect description given that the first high calprotectin values showed up in May 2016).
You might think that I would jump at the chance of starting treatment but I’m not so sure. If inflammation did restart in 2016 then I have thrived so far without medication, do I really need to start now? I don’t want to be dogmatic and take a “I’ve been taking no drugs so I’m not going to start now” stance without good reason. A fellow Crohn’s patient asked what made me hesitant? I suppose the answer is “side effects”. I have not needed to educate myself on the progress of the MABs/biosimilars and their potential downsides. I have a lot of catching up to do and need to understand how the benefits would outweigh the risks.
I have however had experience of drugs damaging other systems or not working. I took Azathioprine for 9 years, with no apparent side effects, then my platelet count suddenly plunged. The concensus was that the Aza had attacked and permanently damaged my bone marrow which in turn reduced its ability to produce platelets. No more Azathioprine. I then tried Infliximab but after 3 doses my symptoms showed no improvement and I went under the surgeon’s knife (2010).
Before the mid-April appointment I need to research Vedolizumab; ask other Crohn’s patients for their experiences and come up with a list of questions for my gastro. I’ve made a start……
I would usually leave my list until a couple of days beforehand. Given that this will be a major decision point in my Crohn’s experience I thought it best to start writing now.
What exactly did the capsule endoscopy show in the way of severity of inflammation and locations? Was it confined to the small bowel?
What was the gist of the discussion that resulted in proposing Vedo?
My QOL is good apart from an ache on my right side
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. That suggests it does not need immediate treatment.
What if I decide not to go back onto Crohn’s medication at present?
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?
Ongoing monitoring regime? Frequency?
How good a measure would calprotectin be for small bowel Crohn’s?
Does the efficacy of Vedo differ as one gets older? Do the side effects change?
Is there the opportunity to have infusions at a local hospital?
Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?
(If I have missed something obvious or you have beem in a similar situation then please leave a comment or respond on Twitter @crohnoid – Thanks)
Over the years I have undergone many different tests but the one that had eluded me to date was the Video Capsule Endoscopy (VCE). Maybe that’s the wrong to put it. Might be better to say that “so far I hadn’t needed one”.
So what changed? The last time I saw my gastro we discussed the apparent conflict between my feeling fit and well (good QOL), clear colonoscopies & biopsies but test results suggesting the opposite – calprotectin = 1300 ; Hb = 11.0 ; gradual weightloss >15kg. We had discussed this before. He had even asked a colleague to carry out a second colonoscopy in case he had missed something. Both of them were stumped so we agreed to park it. I thought now was the time to ask for it to be investigated further. The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and the point where my large and small intestines had been rejoined. He agreed.
We had previously discussed using a self-propelling endoscope but a “pill cam” sounded a less daunting solution. The concern about using a capsule was the risk of it becoming stuck at a narrowing. A radiologist would be asked to review my last MRI scan for strictures before the endoscopy was ordered. The cost of the capsule endoscopy procedure to the NHS is approx. £500.
All must have been well as I got a call from Endoscopy Appointments to agree a suitable date for the procedure. A couple of days later the instructions arrived in the post. Very similar to having a colonoscopy but with none of the dreaded prep solution needed. The leaflet also listed the medications that would have to be put on hold. These included stopping iron tablets and Loperamide 7 days out. Iron tablets – no problem, but Loperamide – that would be the one instruction I wouldn’t be following. The thought of taking a trip to London having not taken Loperamide for 7 days was not even worth considering and would have put in jeopardy attending the Big Bowel Event at the Barbican on 16th November.
Monday 19th November 2018 – GSTT Endoscopy Department
After the glorious weather over the weekend it was a disappointment to arrive in London on a dull, rainy day. The walk to the hospital took me past a number of foodstalls that simply reminded me that I hadn’t eaten since 8:30 the previous morning or drunk anything since 22:00.
I arrived at St.Thomas’ Hospital and, after a few minutes’ wait, was collected by the specialist nurse. She asked the usual questions :
“When did you last eat?” “8:30 yesterday”
“When did you stop taking iron tablets?” “7 days ago. Why is it so far in advance?” “They blacken the walls of the intestine and can give patients constipation”
I explained that I hadn’t stopped taking Loperamide as, for someone who relies on it every day, any thought of stopping for 7 days was a definite non-starter.
“What other medications are you on” I went through the list
She outlined the procedure and I was able to ask the questions. The main one was “can the capsule be used to judge the condition of esophageal varices? If it can then should I cancel my conventional Upper GI endoscopy booked for the week before Christmas?”. She explained that a capsule can be used to look at varices but it would need to be a different type from the one I would be swallowing today.
She then ran through the risks of the procedure. The main one being the capsule becoming stuck and the possible means required to extract it, the worst scenario being surgery. I signed the consent form.
There are several different makes of capsule system available which all work on similar principles. There are also different types of capsule for specific tasks. There is even one with a camera at both ends.
The more advanced ones have higher resolutions & frame rates and some communicate with the recorder unit wirelessly, without the need for sensors. St.Thomas’ employ the MiroCam system which uses an array of sensors to pick up the signal from the capsule and send it to the recorder. (It’s the same unit that the BBC used for the live endoscopy that they broadcast as part of their “Guts: The Strange and Mysterious World of the Human Stomach” in 2012.)
The first task was to attach the numbered sensors in the correct positions around the abdomen. I can see why wireless communication is the future. (I wouldn’t normally post a selfie of my abdomen, in the interests of good taste, but to illustrate…..)
Once they were in position the nurse produced the capsule and asked me to hold it between my fingers then pass it in front of the recorder unit. A bleep showed that they were now paired. As she had already input my information into the unit the display showed my name, hospital number etc.
It was time to see how easy swallowing a capsule would be. The answer – very easy. At 11:40 I took one gulp of water and it was on its way. The nurse switched on the live monitoring function and we watched it enter my stomach. To save battery power she then switched it off and I didn’t have the courage to try it myself in case I ruined the whole procedure. (…and what if I had seen something that, to my eyes, looked wrong? A surefire way of inducing stress)
As the unit has a 12 hour battery life she said the unit would switch off at 23:40 and I could then remove the sensors. The recorder unit would then need to be returned to St.Thomas’. I explained I was not available the following day so we agreed that I would take it back on Wednesday. Two weeks later the results should be available. When would I be able to eat and drink again? Coffee two hours after swallowing the camera and then a light meal after another two hours.
If it had been decent weather I would have set off on a long walk around London, as light exercise helps the transit of the capsule, but I decided I would rather get home in the warm. I took a short walk to College Green (the area outside the front of the Houses of Parliament) to see if there was a media scrum due to some new development with Brexit but there wasn’t so jumped on the Tube to Blackfriars and took the train home.
True to the nurse’s word the unit switched itself off at precisely 12 hours from the start of the procedure and I was able to peel off the sensors with remarkably little pain. The camera is not retrieved after the procedure (although there are some types that do rely on the patient “collecting” it and returning it to the hospital for analysis).
Wearing the receiver unit took me back to having a stoma as it was hanging in the same position as the bag and the adhesive on the sensors gave a similar sensation to that of the stoma backplate.
The analysis of the video was due to take 2 weeks from handing the recorder unit back but nothing was forthcoming. I contacted my gastro consultant who said he would chase it up but after 4 weeks still nothing. I knew I would be visiting the Endoscopy Dept. again on 18th December, for my annual Upper GI scope (looking for esophageal varices related to portal vein thrombosis) so I would ask then.
The endoscopy was being carried out by the head of the Gastro Dept. so I asked him whether he could find my video results on the system. He went off to check the status. By the time he returned I had been prepared for the scope – xylocaine spray (burnt bananas) to back of throat; mouthguard in position; Fentanyl injected. I was unable to speak. Luckily they had held off with the Midazolam so I was, at least, still conscious!
He told me that the video was being checked now but he had seen the first half of it and appeared to show Crohn’s in my small intestine. A nice Christmas present! I would have to await the full analysis before discussing the way forward. I emailed my gastro consultant to tell him the news. He replied that he would keep an eye out for the report.
…and with that the Midazolam was injected….zzzzz
When Will It Be Resolved?
The report took a long time to finally emerge and in another email my gastro said that it did indeed show that Crohn’s had re-surfaced in my small bowel in the form of mild to moderate inflammation. This was a disappointment as I had been in remission since 2011. An appointment has been arranged for 15th April to discuss the treatment options. If feasible I would favour the “do nothing” option. My thoughts on the end of remission and the questions I have for my gastro are in a separate post (opens in a new window) – https://www.wrestlingtheoctopus.com/call-my-bluff/
The Report Finally Arrives
In mid-March a printed copy of the endoscopy report, in glorious living colour, arrived in the post. Whilst I found it fascinating I struggled to understand exactly what the images were showing.
I was intrigued by the transit times : 15 minutes to make it through the stomach; 2 hours 52 minutes travelling through the small bowel; and 8 hours 51 minutes in the colon. These were classed as being “within average range”.
Luckily there was a summary report; unluckily there it was in black and white “…with a background of Crohn’s these are in keeping with mild to moderate active disease“.
When 10th October 2018 arrived I had reached the 8th anniversary of my ileostomy. When I left hospital I had learnt two things about potential future surgery – the average time between operations for Crohn’s patients is 10 years; recovery time is improved by the fitness and weight of the patient but increases with age. Based on these two principles I set myself the target of boosting my exercise and reducing my weight to around 80kg so that should I need to go under the knife again then I was in the best possible state for a speedy recovery.
Having taken the decision to retire early the exercise is mainly physical work around the garden, mucking out stables and taking long walks photographing London (when the opportunity arises). I’ve been achieving my targets and feeling “very well”. There have been a few “blips” along the way but these would come under the heading of EIMs (Extra Intestinal Manifestations – see previous posts). I’ll stick with “very well” from a Crohn’s point of view.
…and then a few weeks ago the unplanned visits to the bathroom started again. They had been happening sporadically over the 8 years, lasting a day or so on each occasion. so at first I wasn’t concerned about the latest occurrence but when it reached the third day, without any improvement, it was time to take action. I emailed my gastro consultant to ask his advice. “Ask your GP surgery if they can carry out stool cultures to look for possible infections and C diff” was the reply. Yes, my surgery could do the necessary tests upon receipt of a fax!!! from St.Thomas’. (A fax? How last century. What’s wrong with an email?)
I went and saw a GP who suggested increasing the Loperamide to the maximum I’m prescribed – 12 daily. After a further couple of days everything returned to normal. When I went to collect the test results they were negative so, as usual, nothing to explain the problem. However one of the GP’s receptionists commented that she hadn’t seen me for a while and thought I didn’t look well. She suggested I should see a GP again. There was a slot that afternoon and after discussing my case I suggested that a blood test might be a good idea (having not had one for over a year).
When the results came back there were no real surprises except for my Hb which was 112. When I checked my previous results I had been around this level for 2 years. To me it seems low and the Ferrous Fumarate I have been taking for many years has had no effect. (Is it not supposed to be a short erm measure to correct an imbalance?`) I had mentioned it before to both my consultants and GP and it did not seem to cause them any great concern.
Call it serendipity but I just happened to see a conversation on Twitter between an eminent Professor (who specialises in iron deficiency) and one of the BBC health programme presenters that tend to dumb down health issues for the masses. His point was that simply taking iron supplements was not the solution to the deficiency. I joined the conversation and mentioned my particular issues. I got a prompt and unequivocal reply – “You, sir, need treatment”.
…and so to my dilemma(s). How much store can be put in my feeling well and being able to carry out any activities I wish to undertake? Do I really want to undergo another range of tests in an attempt to explain, for instance, my calprotectin level of 1300? I’ve already been through multiple colonoscopies, biopsies and scans – all showing no evidence of the Crohn’s having restarted. Is “do nothing” a viable option or would such a “pathway” not even be contemplated in some institutions? Do I want to start taking a new drug treatment for my Crohn’s just in case it is becoming active? The standard treatment would have been a maintenance dose of Azathioprine but that has already attacked my bone marrow and caused my platelets to plummet. The most likely choice would now be one of the biologics with the possibility of going through a long trial and error process until the right one is found.
…and my final dilemma is how to broach the subject of opinions I have read on Twitter, not even some medical web page, without giving the impression that I do not trust my present treatment.