By Sam Alexandra Rose
Sam guest blogs regularly for Bowel Research UK, sharing her experiences of bowel cancer and Lynch syndrome.
Having seen these mentioned in news pieces over the last few years, I share here my personal experiences of having capsule endoscopies, and how they compare with more conventional gastroscopies, which are my least favourite bowel investigation.
What is a capsule endoscopy?
A capsule endoscopy is a small, pill-sized camera that a patient swallows and then naturally passes. The camera takes thousands of pictures as it passes through the body, in order to investigate gastrointestinal issues. The patient wears a recorder that communicates with the camera and records the images for the doctor to look at later. It’s an alternative to more invasive procedures such as colonoscopies, and it offers some great benefits.
How long have capsule endoscopies been around?
Quite a while, actually! I had my first one in 2018 but the first capsule was swallowed in Israel in 1997, and manufacturer Given Imaging received FDA approval in the US in 2001. Capsule endoscopies aren’t available in every hospital, which is why they often appear to be spoken about as brand new technology in the news. However, they are being rolled out more widely and may one day be a routine part of cancer screening.
Do you still need to visit the hospital?
You do still need to go to the hospital when you’re having a capsule endoscopy. This is so that you can swallow the camera under supervision and be kitted out with the recording equipment. Then the next day when it’s all done, you’ll need to go and give the recording equipment back to the department.
Do you still need to drink bowel prep?
Unfortunately, yes – your bowel needs to be empty so the camera can take clear photos, so you’ll need to do the bowel prep the day or evening before. The last time I had the bowel prep, it didn’t actually taste too bad. I mixed it with lemon cordial, so that’s my top tip for getting through it. Just follow the instructions regarding making the drink and fasting, and everything should go smoothly.
What are the benefits of a capsule endoscopy?
The main benefit for us as patients is that it’s an easier alternative to a colonoscopy. It’s generally a more pleasant experience (bowel prep aside) and requires less time at the hospital. It also doesn’t require sedation and comes with fewer risks of complication. I imagine it also frees up some time for staff, as well as beds in the endoscopy unit.
What are the risks of a capsule endoscopy?
There is a small risk of retention during a capsule endoscopy, which is when the capsule stays inside the body instead of being passed. If this happens, it can be surgically removed, but the capsule can be retained without causing harm to the person. As I experienced, an x-ray can find out whether the capsule is still inside the body or if it has been passed. Overall, capsule endoscopies are considered to be very safe.
Is the capsule difficult to swallow?
Surprisingly, no. It is the size of a big pill, so looking at it you might think it’s hard to swallow, but people often find it’s easier than they expected – I certainly did. You’ll take a tiny sip of water to help it along the way, and if you’re usually okay with swallowing tablets, you’ll likely be fine.
Can you go about your day as normal while the camera is doing its job?
Yes. The first time, I went to work as usual. The second time, I went to the cinema. The third time, I simply went home and tried to relax.
What’s the process?
Alright, let’s get into my more specific personal experiences. My first capsule endoscopy was in 2018 when I was diagnosed with duodenal cancer. At that point, I’d already had my diagnosis, so the purpose was to have a more thorough investigation into my small bowel. This was my most straightforward experience of having a capsule endoscopy. The process went something like this:
I drank the bowel prep the day before, following the instructions for when to stop eating and how much to drink and when. I arranged to work from home that day so that I could have the prep and stay near a toilet. The next day, I went to the endoscopy unit at my local hospital for my appointment. This involved having the recording equipment strapped to me, with a strap over my shoulder holding the recording device, and a belt around my waist that communicated with the capsule. I then swallowed the capsule with a tiny amount of water. The doctor checked the equipment was working and that she could see what it was seeing on her computer screen. She went through the whole process with me, answered any questions and was very reassuring.
After that, I was free to go about my day, so I went to work. I was given a sheet so I could write down any “events”, such as when and what I ate, once I was allowed – it was still a couple of hours until I could eat or drink anything.
Thanks to my super speedy system and lack of large intestine due to my previous bowel cancer, the capsule passed at around 3pm, six hours or so after I had swallowed it. I even saw its flashing light as I looked into the toilet bowl. (And in case you’re wondering, no, they do not want the capsule back once you’ve passed it!)
The light on the recording machine changed colour a few minutes later and beeped (loudly, as I sat in our quiet, open-plan office) to confirm that it had lost signal from the capsule. At that point, I was free to take off the equipment, which I would return to the hospital that afternoon.
Unfortunately, my capsule endoscopies since then have not been so straightforward. The second time I had one, it took so long to pass the camera that the battery died before I could get confirmation on whether or not I had passed it. Instead of handing over the equipment that afternoon, I visited the department and was told to keep the equipment on until I went to bed. The battery went flat before bedtime, so when I went back to the department the next day to hand the equipment back, I had to go for an x-ray to check whether the camera had passed. Luckily, it had. Unluckily, the capsule had stopped travelling through my system and instead spun in place for about four hours before continuing on its journey. This meant that it didn’t take enough photos before the recording equipment ran out of battery. Therefore, I had to go through the whole test again, bowel prep and all. As someone who had already had enough experience of hospitals and tests to last a lifetime, you can imagine how upset and frustrated this was for me. I should note here that the reason why my capsule spun in place is that by this time I had undergone Whipple surgery for duodenal cancer, so my internal plumbing was quite different to how it used to be and to most people’s.
My second attempt rolled around, but this time we were to do it a slightly different way. To reduce the risk of the capsule spinning in place again, they were going to place it by gastroscopy. Hooray? Since a gastroscopy (a camera scope down the throat) is my least favourite medical procedure, I was again not too pleased with the news. However, I also didn’t want the capsule to decide to have a little sit down halfway through the job again, so it seemed like the best option.
This means that this capsule endoscopy – and all subsequent and future capsules – was done in conjunction with a gastroscopy. I need to have a gastroscopy every year anyway as part of my Lynch syndrome screening, so I have now bundled the procedures into one appointment. I certainly don’t want to have one gastroscopy and then another one later where they place the capsule, so I asked my medical team to always do both procedures at the same time instead of sending me for a second gastroscopy appointment.
The process for my capsule endoscopy placed by gastroscopy is as follows: I go to the endoscopy unit and have the initial run-through of medical questions and put a hospital gown on over my clothes. There’s usually a little wait on the ward because the time they give me is the time to arrive, not the time the procedure will take place. When it’s time, I’m fitted with the recording equipment for the capsule and then I go into the room for the procedure. I am given throat spray to numb my throat for the gastroscope. Then I lie down and after they put in a mouth guard, I am given sedation, which I always ask for when I have a gastroscopy because then I’m more relaxed and don’t remember much about the procedure. The capsule is placed via the gastroscope and they have a little look around while they are down there – so that’s the gastroscopy part of my two-part procedure in the bag. After that’s done, I’m wheeled back into the ward and need to wait for a little while as the sedation wears off. My partner drives me home and I can’t work or drive for 24 hours due to the sedation. The capsule should pass later that day as it normally would if I swallowed it. I am a special case for sure, so other people’s experiences may vary but I hope my experiences provide some useful insight into having a capsule endoscopy and having one placed by gastroscopy.
Any other tips?
I do have a clothing tip for what to wear to your appointment. If you’re going to work or otherwise going out and about after your appointment and you don’t want to wander around with the recording equipment visible, I recommend wearing a vest top or fitted t-shirt with a long, baggy t-shirt or jumper over the top if you have one. That way, you can take off your top when putting the recording equipment on, where it will sit comfortably over your vest or t-shirt, and then put the baggy top on afterwards so the recorder and belt are less noticeable. I do this every time, and if it weren’t for the thing beeping when it lost connection with the camera, I would have made it through my workday that first time without anyone knowing I had it on!