(In my experience this was not a typical colonoscopy. If you are about to undergo a similar procedure don’t let this post put you off. There is always the option of more sedation)
I said in a previous post that my last gastro appointment had been “interesting” but the offer of a colonoscopy “with an audience” would take that to the next level.
The last one was in July 2016 so why another one so soon? I had also undergone an MRI scan and the results were very definitely at odds with the scope. There was also the little matter of the latest calprotectin test which showed a value of 896 (high). 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.
Saturday 11th March 2017 – St.Thomas’ Hospital, Endoscopy Suite
The day of the scoping arrived. By 10:30 I was wristbanded and cannulated. I went off to change into a pair of very stylish paper boxer shorts with a velcro flap up the back. Once I had donned hospital and dressing gowns it was into the male waiting area until they were ready for me.
Eventually the Gastro registrar appeared and went through the procedure. He explained that he would start off and then hand over to the lead consultant when we were joined by the audience (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 it 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 position of the endoscope in the colon.
It was not an easy journey as 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 down. It was also a long journey as the aim was to go a short way into the small intestine past the anastomosis (the rejoin after my temporary ileostomy).
In the room next door my regular consultant was acting as chaperone to the group of international gastroenterologists who had come to St.Thomas’ to see “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 explained the MRI issue that needed resolving and called up a copy of the report from my electronic file.
With a lot of 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 3 gastros 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 (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 scope and, under voice control, nipped into the wall of my gut. I waited for the pain but nothing, just a small trickle of blood. I suppose that is why you are given a mild sedative. He decided to take a deeper sample so the device went back into the same location and took a further bite.
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 in to 3 leading gastros discussing your case and with the evidence before your eyes?
Before leaving the unit I was given a copy of the Endoscopy Report, which I have reproduced below, and it included a possible explanation for the callprotectin result. We will have to wait for the biopsy results to be certain.
I had started my journey (real journey so acceptable use of word) this morning expecting to be starting medications or at worst seeing surgery on the horizon. I was leaving for home with a much more positive outcome, hence the title of this post.
The only downside was the length of the procedure. Usually I suffer no side effects from a scoping but this time I ached a fair amount for the next 24 hours.
Two days later I went to see my GP to arrange for a bile acid sequestrant to be prescribed to treat BAM. I arrived expecting to take away just a prescription and ended up being referred to a surgeon, but that’s for another time…..
This is the follow-up post to “Where do we go from here?” posted on 3rd December 2016. (…and my record for future reference….)
Gastro Appointment – Guy’s Hospital 12th December 2016
As the date for the appointment drew closer my stress level increased. Not from the potential medical implications (though some might doubt this!) but the pure logistics of getting to London by 10:20am. It shouldn’t be a problem until you realise we have to rely on Southern Rail actually running a train. As it turned out my train was exactly on time but afterwards there were no more heading to London for 2 hours.
Having arrived at Guy’s Hospital with five minutes to spare I was greeted by a nurse who explained that the clinic was running 45 minutes late. I asked her to put a note on my file that I wanted to see my usual consultant (the top man). The wait increased to just over an hour when I heard my consultant calling my name. TIme to see if there were some answers. I produced my list of questions/comments.
We started out by discussing the outcome of the MDM. Had they been able to reconcile the apparent contradiction between the colonoscopy results and the MRI scan? No, they were at a loss to explain the differences.
The MRI report noted a 100mm stricture in the transverse colon and another in the ascending colon. Neither had been apparent from the scoping. The scan also showed adhesions, one of which was between intestine and bladder. This could potentially lead to a fistula developing between the two. The tell tale sign would be gas when passing urine. That was a new one on me and certainly not something I had experienced so far.
The word that worried me was “fistula” but he pointed out that it was a possibility not a certainty.
The options left were to repeat the colonoscopy, or the MRI scan, but a barium enema, which is a test designed to look at the colon, would be preferable. (Not sure for whom. I still remember the last one over 30 years ago.) Rather than going straight to another procedure he suggested that we carry out a calprotectin test and if the result was the same or higher than last time (512) then it would be time to start practicising the buttock clench, so vital for the enema.
He asked how I felt generally. My answer was “very well” apart from every 10 days or so getting an upset stomach for half a day then back to normal. There was also an incident when I seemed to be leaking fresh blood but it only lasted a day and I concluded it was purely mechanical, maybe a burst blood vessel. He agreed with my conclusion.
I explained that I was keen to remain drug free having been taking no Crohn’s medication since 2010 (post-ileostomy). Was that an option with mild inflammation? Yes. The aim would be to start treatment early enough, to avoid surgery, should the inflammation worsen. (The knife is always a threat though). In line with my aim of not taking any new drugs I hadn’t been to see my GP about starting Questran for Bile Acid Malabsorption. I would remain on just Loperamide and adjust the dosage accordingly.
The one question I forgot to ask was “Does my reaction to Azathioprine (bone marrow suppression) suggest that some of other common drugs may be unsuitable?” That will have to wait for the next appointment.
I would be having my annual upper GI endoscopy at St.Thomas’ the following week and was wondering if we should also be monitoring my liver for stiffening (PSC). He said I should ask the endoscopist as it was their specialist area. The visit would also give me a chance to drop off the calprotectin sample to the path lab. I would then need to email my consultant in mid-January to get the results. Fingers crossed for <512. Clench.
At the end of the appointment I mentioned that I had eliminated a major element of stress by no longer commuting to London and have virtually retired. As I now had time in my hands I would be keen to do something for the IBD Community.
What is so nice about these appointments is that you never feel rushed. Every question gets a considered answer and all decisions are made jointly. Excellent.
After the appointment it was off to have lunch with a fellow IBD sufferer and then on to meet up with an old colleague for a coffee before attempting to get a train home.
I started writing this post a while ago but for one reason or another didn’t get round to finishing it. (My wife would say it’s a “man thing”). I’m not sure it will add greatly to the body of knowledge about Crohn’s but, from a purely personal level, it allows me to keep a record of my appointments and procedures.
I’m returning to a subject I’ve written about before but this time the effects are worse and have lasted longer, sufficient to make me very concerned.
On 5th May I had an annual check-up with my GP and had pre-empted the appointment with a full blood test. The results came back OK except for lymphocytes and platelets (expected). I emailed a copy to my gastro consultant and mentioned that I had been getting abdominal pain for the last few weeks and rushing off to the bathroom. He replied that I should have a calprotectin test and would have a sample pot sent to me (hopefully).
The symptoms are a pain around the midriff; extreme tiredness – so much so that I can get in from work, have dinner, then collapse on the sofa and wake up at eleven ready to go to bed; but most worryingly, and not wanting to get too graphic in a blog that may be read by non-IBD sufferers, let’s just say the phrase “through the eye of a needle” comes to mind.
I’ve been told told that if you can visualise pain it is much easier to deal with. Mentally I lined up the suspects. The “upset stomach” could be from :
i) a virus picked up on the train up to London
ii) eating something dodgy (I did eat out in a restaurant in Highcliffe one day and the food was pretty disgusting)
iii) wearing a very tight belt whilst doing a lot of physical work
or the one that constitutes the “elephant in the room” – five years of Crohn’s remission was at an end
Ironically the last time I saw my Gastro consultant I had told him I felt very well and couldn’t see why we didn’t extend the gap between appointments from six to twelve months. I was now regretting it and had started to notice my weight was dropping and the ache around my anastomosis was getting more frequent.
I would have to see what the calprotectin test showed. The sample pot had still not arrived so I took it upon myself to get one from my GP, fill it with the “necessary” and drop it into the IBD Nurses at Guy’s Hospital.
The result came back on 14th June. My consultant emailed “Interestingly it has risen to 436” (previously 179) and suggested that a colonoscopy ought to be the next step. “Would I be OK with that?” Not a problem but I was starting to wonder if I was “crying wolf” as ever since I had dropped the sample in, I had started to feel a lot better. I think this must have been wishful thinking. Something had caused my calpro result to keep rising and my weight was still falling (down to 82kg from a high of 91kg).
The colonoscopy was duly booked – 12th July. I wondered how that would allow my small intestine to be seen. My consultant wrote back that the colonoscopy would be able to reach just past the anastomosis, the most likely place to find inflammation if it had restarted. If the scope showed nothing then I would need further tests by which I assume he meant a scan. I’m sure he would not want to risk a Pillcam.
This post will continue after (tomorrow afternoon’s) scoping. One more sachet of Citrafleet to take………
I’m not going to describe the whole colonoscopy process, just the things that made this one slightly different and the conclusions.
Firstly taking the prep timing has changed at St. Thomas’. For an afternoon procedure instead of taking both lots of prep solution on the previous day they are now split and the recommendation is to take the second sachet at 9:00am on the day of the procedure. This didn’t seem like a good idea, especially with a travel time of nearly two hours on public transport, I decided to take that second dose at 5:30am and I’m glad I did. It had only just finished “taking effect” at 10:30am when I was due to leave home.
Secondly, and this one would make a good subject for a fashion blog, the very flimsy paper briefs that one previously had to put on have now been replaced with some very stylish dark blue paper boxer shorts with a large slit up the back. Modesty prevented me from taking a selfie and posting it.
For the first time ever the nurse had problems finding a vein for the cannula. After two attempts with my right arm she handed me over to her colleague. Luckily she tried the other arm and was successful.
One of the doctors came in to get the consent form signed and I explained that I wanted to keep alert throughout the procedure, so that I could ask questions, and mentioned that my weight was a lot lower than previous scopes. He decided to give me less sedative than usual and that worked fine.
Whilst my main GI consultant watched on, the doctor I had seen earlier started the scoping. As the camera made its way ever onwards it started to show mild inflammation in the colon but when it reached the anastomosis the inflammation disappeared. The doctor decided to see how much further he could get the scope into the small intestine, made possible by my ileocaecal valve having been removed during my ileostomy
Normally I don’t notice the movement of the camera, the air to expand the gut or the liquid used to clean the lens but that final push was the exception. I ended up being asked to roll onto my back which made it a little easier. Once again there was no inflammation and with that the scope was withdrawn.
The conclusions were : ongoing, mild colonic Crohn’s disease but no evidence of recurrence in the neo-Terminal Ileum (the most likely place for it to reappear following surgery). My consultant said that colonic Crohn’s would explain the high calprotectin result but he was clearly most concerned about the weightloss (down below 80kg for the first time since before my ileostomy) and sent off a request for an MRI scan.
By 15:30 it was time to leave St.Thomas’, clutching a copy of the report and accompanied by my escort , a fellow GSTT IBD patient who gave up her afternoon to help. Thank you. (I have since been able to repay the favour by agreeing to talk to some undergradute nurses about “Living with IBD”).
On the way out we called into the MRI unit to see if it was possible to book a date there and then. Unfortunately bookings were done from a different location but the receptionist confirmed that the request was already on the system and marked “Urgent”. I should be seen within 2 weeks.
After a couple of days I tried ringing the MRI Unit to find out if they had allocated a date yet, after all, if I was to be seen inside two weeks, surely I would need to be on the schedule by now. Disappointingly the answer I got was that they were working through the bookings “in order”. It didn’t make a lot of sense.
I left it over the weekend then tried again. This time the person I spoke to must have realised the urgency and I was given a date of Friday 29th July, at Guy’s, 12 days from the request going in. I would not need to be accompanied this time as there would be no sedation involved. I then received a letter for a follow-up gastro appointment to discuss the results – 5th September.
The day of the scan arrived. I made my way into the unit. It was newly refurbished and extended and had only been open a few days. The number of scanners fhad been increased from two to four.
You are asked to arrive early as there is a prep solution to drink. I knew what to expect – a thick, lemony liquid with the consistency of wallpapaer paste. I must remember to keep stirring it. But no, it was all change. I was given a one litre bottle of a clear fluid and a glass of water as a “chaser”. The nurse told me to drink a cup of the liquid every 5 minutes. She mentioned that it wasn’t that palatable and she was right. I must have managed to drink about three quarters of the bottle before it was time to be cannularised.
For the second time in 3 weeks the nurse had difficulty in finding a good vein that would take the cannula tip all the way in. On the third attempt, using the other arm, it was finally in place.
I’ve described MRI scans, in detail, elsewhere in this blog so won’t repeat it all here. They are noisy machines so I was rather surprised to have fallen asleep towards the end of the procedure. I think it shows just how tired I have been recently.
A radiologist would interpret the results and have the report ready for my gastro appointment.
Just a routine, 12 monthly Haemo appointment. I didn’t have a list of questions because nothing had changed since my last visit. The doctor called up my records on her screen and said, in passing, “just to put your mind at rest – the MRI scan didn’t show anything unexpected, just some mild stricturing in the small bowel which had been seen before.” Interesting. I wasn’t aware of the strictures. Something to discuss on 5th September. To be continued…..
…and for my next appointments – Endoscopy Suite, Haematology then Endoscopy Suite again. I really could do with a gap year from Crohn’s. This was going to be one of my shorter posts but as I use them for jogging my memory before the next appointment it has ended up with a bit more detail than I had originally envisaged.
Just a quick recap. I’ve had three calprotectin (stool) tests over the last 12 months or so and whilst the first one gave a good result the other two have shown a rising trend suggesting there was inflammation in my gut. My consultant thought it would be prudent to have a colonoscopy as I hadn’t had one for just over two years. Just to complicate matters I’ve been taking Omeprazole which has been shown to give elevated calprotectin levels but I think that’s clutching at straws. If it’s the Omeprazole then why weren’t all the results elevated as I started taking it in 2010?
Recently I’ve been feeling very well. No abdominal pain. No bathroom dashes. Even the ache around my anastomosis has been far less frequent. When in London I’ve been walking around 10km a day for exercise. I was curious to know what the colonoscopy would show. I will admit to being a little concerned as the findings would have a big effect on how 2015 went……
Monday 9th February – St.Thomas’ Endoscopy Suite – they work on the principle that before you have a colonoscopy you are required to go in and personally pick up the preparation tablets/sachets so that they can run through exactly when you need to take them for a “successful evacuation”.
Unfortunately I had a long wait but when the nurse eventually appeared she did apologise. I recognised her from my very first colonoscopy at Guys/St.Thomas’ several years ago.
As an old hand at these things I went prepared with the timings already in my calendar. But no, since the last one I had in 2012, they’ve changed the regime. Instead of taking all the prep on the day before the procedure you now take the final sachet on the morning. I was wondering how that works for the train journey up to the hospital?
The advice leaflet has been rewritten and answers a question I have long wondered about – why do some patients get given 2 litres of Klean-Prep to drink whilst others have 2 x 150ml of Citrafleet? The answer : if the doctors are concerned about your kidneys or you have kidney disease they may choose Klean-Prep or Movi-Prep as these are less likely to affect your kidney function.
..and why do they tell you to avoid drinking red juices or cordials? Something to do with fibre content? No, it’s because they don’t want any residues of red coloured liquid in the gut that could be confused with blood. Obvious really.
As I was leaving, clutching some senna tablets and two sachets of Citrafleet in my hand, the nurse advised me to arrive early as my consultant always like to start on time and it takes a few minutes to attach the wristband/insert the cannula.
Wednesday 11th February 2014 – Guys Hospital Haematology 2 – Not much to say, for a change. This turned out to be a routine appointment and I didn’t have a long list of questions. The obligatory blood test showed all my levels were OK except platelets. No surprise there then. My consultant reiterated her advice “not to get hung up on numbers” ie. platelet count. She repeated her description of my bone marrow as being “a 4 cylinder engine running on only 3” and therefore not delivering the right quantities of platelets. Next appointment – 6 months.
Countdown to Colonoscopy – a brief description of the lead-up to the procedure just in case it might help others who have not experienced the delights before. (Old hands please skip down the page)
Saturday 21st February 2015 – 4 days to go – stopped taking iron tablets. Didn’t make a lot of difference.
Sunday 22nd February 2015 – 3 days to go – stopped taking Loperamide. I wondered how long it would take for the effects of the drug to tail off. Could be an interesting train journey into work tomorrow.
Monday 23rd February 2015 – 2 days to go – stopped eating anything with fibre in ie. fruit, vegetables, nuts etc. Drank lots of fluids. Train journeys to and from London were fine.
Tuesday 24th February 2015 – 1 day to go – worked from home. Light breakfast and then nothing after 9am except lots of fluids. Had a phonecall from Endoscopy Appointments saying that 4 patients had all been booked in for 1:00pm for Wednesday so they were putting me back to 2:00pm. This was a bit annoying as I had carefully worked out who was going to collect me from the hospital after the procedure. Had to rethink my plans.
At 4pm – took 4 senna tablets; at 5pm – took first sachet of Citrafleet dissolved in 150ml of water and stood by for its effect.
Prep then kicked in, yu can guess the rest. Coughing to be avoided at all costs.
Wednesday 25th February 2015 – St.Thomas’ Endoscopy Suite – at 7:30am took the second sachet of Citrafleet and drank lots of fluid until 11:00am then nothing. 12:30pm down to Redhill Station, which luckily has toilets on the platforms, and then the train journey to Waterloo and a ten minute walk to St.Thomas’. All achieved without a problem. I think next time I will take the second sachet a lot earlier. Suprisingly I didn’t feel that hungry. I know on previous occasions I have been absolutely famished and that was the abiding memory of having a colonoscopy. The procedure itself is a piece of cake (not literally of course).
Arrived at the Endoscopy Street at 1:45pm and booked in. At around 2:30pm was still sitting in waiting room when the fire alarm started sounding. One of the nurses announced that it was a fault and there was no need to move. The alarm finally stoppped but it was now gone 3:00pm. My consultant appeared, greeted me and said “I hope you bought something to read with you”. I knew then it would be a lot longer before it was my turn to be scoped. He made some comment about having to leave the building to which I replied “that would have been the second evacuation of the day for me”.
Finally, at 4:00pm, the nurse called my name and it was time to get changed into a surgical gown. I’m pleased I took a dressing gown with me because I can never get the tie-ups to knot properly. A cannula was inserted into my right hand, for a change, and it was off to the pre-procedure waiting area.
I was the only one in there so at least there wasn’t a queue. A doctor working on a IBD research project appeared and asked if I would be prepared to take part. She would like a blood sample and some biopsies. She gave me a leaflet to read about it and said she would be back shortly with a consent form.When she came back I said that I was happy to help with the research but it was not certain that I would need any biopsies done and that I didn’t want to risk upsetting my gut unnecessarily. I agreed that should routine biopsies be required then she could take additional ones otherwise I would prefer not to. I signed the consent form on that understanding.
Shortly afterwards my consultant appeared and explained that he had a young Registrar training with him who was showing a particular apptitude for scoping. Would I mind if the Registrar did the colonoscopy whilst he watched. I didn’t mind, it was just another procedure. Of more interest was how much longerI would need to wait? They were just finishing up. He went off to get a consent form and when he came back was happy to answer a few questions. The main one was “can there be a long period between the calprotectin test showing a rise in inflammation and a flare occuring”. Yes and that’s why they use the calprotectin tests to show if intervention is needed and allow medication to start before the patient is ever aware of any symptoms. It could be described as over treating but it is preventative rather than reactive.
He mentioned he had been interviewed by BBC2’s Newnight on the subject of fecal transplants for combating C diff, for which it had a high success rate, and the discussion had also turned to IBD. He did not know when the report would be shown. He described a fecal transplant as being like giving a giant dose of pro-biotics but it’s use to help IBD patients was still in the research stage. I also asked if the camera did show inflammation was there an alternative to Azathioprine. Yes, there were lots of alternative drugs now available and they worked in a more targeted manner.
Just before 4:30pm it was time to enter the procedure room, quite a familiar environment as I had had a couple of upper GI endoscopies in there last year. There was a team of six, maroon clad doctors and nurses, three of each. I got onto the trolley and had the oxygen feed attached. I was asked to roll over onto my left side and bring my knees up to my chest into the best position for introducing the camera.
Did I want sedation? Yes please. The same amount as last time which would leave me sufficiently awake to watch the images in glorious, living colour and ask “what’s that?” as the camera traveled ever onwards. Whilst the sedatives were being prepared I saw the opportunity to discuss Bile Acid Malabsorption (BAM), a subject now close to my heart. I explained that after my operation, back in 2011, I had expected my digestive system to return to normal. I had no knowledge of possible BAM and its side effects (chronic diarrhoea). From the posts I have read on various IBD forums and FB pages many others are in a similar position. It really is a subject that needs much wider awareness within the IBD Community. I’ll keep plugging away at this one.
Time to put the soap box away. Four syringes of sedative injected into the cannula and we were ready to go. It was time to find out what state my guts were in. The sedative had taken away any sense of foreboding that I might have had. After the initial sensation of the camera being inserted I felt nothing. We were all looking at the images on large monitors as the camera started its journey. From that point I cannot remember the the rest of the procedure or asking any questions. I don’t know whether I was conscious but the sedation has dulled my memory or if I lost consciousness so there is nothing to remember anyway. I vaguely recall discussing what we were seeing with my consultant and whether the camera had made it to my anastomosis but it is very hazy. Maybe I’ll ask for a little less sedation next time.
I woke up in the Recovery Room where my blood pressure and oxygen levels were monitored. Once they could see my readings were OK I was allowed to get dressed and make my way to the Discharge Lounge where I was given a cup of coffee and some biscuits. At that point my brother-in-law arrived to accompany me home. I just needed to have the cannula removed and to be given a copy of the report. I was disappointed that the report was in black and white but it did show that there was no significant signs of inflammation. I was given a Rutgeert’s Score of i0. Very goods news and I was free to go. We left St.Thomas’ just gone 5:30pm and walked the 3 km back to Victoria Staion via the backstreets of Westminster.
Whilst I was having dinner I re-read the colonoscopy report and it struck me that it wasn’t very clear. I emailed my consultant asking for clarification :
“Please pass my compliments on to your Registrar as he drove the camera very well and I have felt no after effects. I think the sedation must have taken over at some point because I don’t remember asking how what you saw on the scope squares with the rising calprotectin values. Also having now got a copy of the Endoscopy Report I’m puzzled by the first sentence in FINDINGS. Should “with” read “without”? Was there anything unusual at the anastomosis?”
The next morning I received a response :
“Oh dear – that’s not the best written report. I will get it amended. Apologies
The terminal ileum was entirely normal as was the anastomosis.
There was some mild inflammation in the colon – not impressive enough to treat to be honest, but this is probably the cause of the mildly raised calprotectin.
I’m glad the experience was acceptable and will pass on your comments – thanks for the feedback.“
I had half been expecting the scope to find nothing but, as with all health matters, you can never be certain. I’m not going to tempt fate by predicting a quiet year bit, here’s hoping…..
Next GI appointment – 6 months time and no need to re-start Crohn’s medication.