THE COLONOSCOPY EXPERIENCE

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……

HMS Belfast
Guy’s Hospital at London Bridge, next to The Shard

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 consulant 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.