There is a reason for my radio silence. My brain is only just getting back to normal after that pinnacle of coeliac fun, the endoscopy. For those of you who don’t know, an endoscopy is a procedure whereby your insides are examined using an endoscope; a long tubey thing with a camera / scraper on the end. Sounds a bit horrifying, no?
Read a proper medical description on the NHS page, here. An endoscopy with biopsy (sample collection) is still the gold standard, i.e. the only truly reliable method of coeliac disease diagnosis, so many in the gluten free community will at some stage go through it. There are always lots of questions in the forums and Facebook groups asking what to expect, so I thought I would share my experience.
My reason for having an endoscopy this time was not coeliac diagnosis (I was formally diagnosed aged 2), but as more of a check up. I won’t sugar-coat it; the experience was not my favourite. The procedure itself was over within about 10 minutes, but the entire preparation, waiting and recovery process took around 2 days.
You are not allowed to eat for 8 hours before the operation. Mine was at 2.45 pm, so I stopped eating the night before at 9 pm. I didn’t get out until around 5.30 pm, by which time I hadn’t eaten for around 20 hours. You are allowed to drink only water and black tea pre-op.
When I arrived at the hospital, a nurse talked me through some legal documents and checked if I had any health issues that could impact the procedure. I took my clothes and jewellery off, and she gave me a less-revealing-than-I-had-feared hospital gown and socks to wear. Thankfully, I was allowed to keep my undercrackers ON.
WARNING: If you’re anything like me, you may worry less if you go in not knowing too much about the procedure; for those of you who find it helpful to know in advance, read on.
Another nurse inserted a cannula into the top of my hand, so that the doctor would be able to feed me drugs through an intravenous drip later. I was walked over to the operating room and the staff got me settled onto a bed, where I lay down on my side. I was then sedated (I remember the words,‘This is going to feel like a lovely glass of wine!’), and the procedure began.
Though I was sedated, I was awake enough to feel and vaguely understand what was happening. I had tubes inserted into my nose, my mouth wedged open with a plastic implement, and a long tube inserted through my mouth, down into my duodenum, where the doctor scraped off a sample and took photos. I remember gagging painfully on the tube. It was what I imagine being force fed would feel like. I think I made the experience worse by panicking; if you relax totally and keep breathing evenly, it is probably a lot less traumatic.
After the procedure, I was still sedated, and was wheeled into a quiet room to lie down and sleep off the worst of it. I was in there for around an hour, and I was hooked up to an armband which measured my blood pressure every 15 minutes. Nurses checked up on me periodically.
My memories of this time are quite hazy, but I believe a nurse took me to a side room and sat me down with a water, and then another nurse fetched my mum and went through some hospital discharge documents with us, and told me what I could and couldn’t do for the 24 hours afterwards. I was specifically told not to drink any alcohol. I found it helpful to have an ‘advocate’ with me at this point; I was in no fit state to think about sensible things.
I was tired and somewhat woozy for around 24 hours after the procedure. After the sedation I had, you are not meant to cook, drive, cycle, sign any legal documents or basically do anything potentially dangerous or important for a day or so, so it helps to have another person around. It is in fact highly recommended by the hospital (possibly mandated?) to have somebody with you at least to take you home afterwards. I was definitely glad that my mum had come to stay with me.
I had a sore throat for around 24 hours afterwards, and a slight brain fuzziness for the next couple of days – I tried sitting down to write about this sooner, and nothing would come out!
Still I was up and about the next day, and was able to make a brief appearance at the Allergy Show on Saturday (more on that later) and do some gentle walking around London.
The question on my mind before I had the endoscopy, was whether or not to be sedated. The overwhelming majority of people that I asked advised going for whatever drugs they could give you. A few were in favour of toughing it out with just the throat numbing spray (which leaves you wide awake throughout). There are advantages and disadvantages to both, but personally I would always opt for sedation, as I think the process would have been more distressing if I’d been fully awake.
I was treated at Chelsea and Westminster hospital in South London. I felt like I was in safe hands; the staff were kind and efficient, especially the nurses, who were really good about updating my Mum throughout the procedure. Somewhat fortuitously, there is a Carluccio’s opposite the exit of the hospital, which made for an excellent post-op treat.
My employer was very understanding, and I was able to take the op day off as sick leave. I arranged the appointment for a Friday, so that I then had the weekend to recover. If you have sedation I would recommend doing this or at least having the following day off work to get back to normal.
At the end of the day, even though it is unpleasant the procedure is a minor one; and at least it is over quickly. It is worth it if it helps you get an all-important diagnosis.
Please feel free to add your own experiences below, I hope this helps out a few other coeliacs!
* Disclaimer: Please remember that my experience is just that; mine only. There may be variations in the procedure in different hospitals, and your treatment and recovery may vary depending on any additional health conditions.