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TMI alert: My endoscopy experience

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?

Bowie is also horrified.

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.

Pre-op

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.

handy diagram

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.

The Endoscopy

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.

imagine you’re here instead.

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.

Post-op

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.

Recovery

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.

Notes

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.

where the magic happens

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!

Issi

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* 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.

8 Comments

  1. I received a diagnosis for Coeliac disease 3 months ago and have adapted my diet to cope with the new regime.

    My journey started about 10 months earlier when I talked to my Doctor about feeling a bit run down and lethargic. She sent me for blood tests which revealed a B12 deficiency so I was prescribed a series of supplements to improve my iron levels and B12. However after a 3 month course my doctor found, after more blood tests, that my B12 had not altered at all. She did not mention the possibility of being Coeliac but sent me for a Gastroscopy and Colonoscopy. Both procedure’s were pretty strait forward (the throat numbing spray was the worst bit but that effect lasted only about 30 seconds) otherwise I was pretty oblivious to what else went. I chatted with the doctor as I watched progress on the colonoscopy on his monitor and mentioned where sci fi writers must get there ideas from when you see those weird passages that link together space stations . . .anyway I digress!
    The upshot of it all was a letter from the Consultant at Guys telling me I had Coeliac disease and should change my diet immediately! Immediately it was. My wife and I chucked out all the gluten based stuff in our cupboards and she decided that it would do us both good to adopt the diet. I am very lucky that she is very understanding and helpful although she does keep a naughty tin which I am not allowed in :)

    Within a week of cutting out the wheat I found my energy levels improving, the aching in my legs subsiding, no more bloating, much less flatulence and generally feeling much better about myself. I realise my journey is a short one so far and here I am at 3 months feeling more positive about my general health. There have been a few glitches along the way but these could be unrelated to my disorder. I have an appointment to see the nutritionist at Guys next week to discuss my options further and maybe some more tests?

    I have been getting gluten free bread, rolls and baguettes on prescription from the pharmacy which has not been to bad. The baguettes and brown rolls are very good. If you get a prepaid prescription this can help a lot with the cost. We have eaten out twice the Green Room at the National theatre was very good and Chef came to discuss my needs. The menu is limited but some good choices.

    Good blog by the way will be keeping an eye on it should also mention of course the Coeliac Society who’s information has been very useful, I am a member.

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  4. Anne-Sophie says

    I had my endoscopy done in October 2013. The literature I got said that having high blood pressure (which I do) could complicate the whole sedation issue. That and the idea of being woozy for 24 hours after didn’t appeal. I went for the throat spray option, and I rather wish I hadn’t.

    First of all it tastes like… well, I imagine it’s what battery acid tastes like. Second, it does nothing to numb, quell or lessen the gag reflex. And because I couldn’t feel my throat, I had a moment of irrational panic, thinking that I couldn’t breathe! There was much gagging, there was crying (a side effect of the retching, not out of pain or fear), and I was desperately trying to “step in to my cave and find my power animal” (a la the film “Fight Club”). To be fair, like with your experience, all the health care staff were very nice, and I think one of them was there specifically to hold my hand and comfort me. And sure, when it was over, all I was left with was a sore throat and a strange sensation in my stomach.

    As it stands at the moment, I would probably go for sedation if I had to do it again. But maybe in a few years time my memory will have faded and I’ll try and toughen it out again! Long story short: For me it was very uncomfortable (but not painful!) for the duration of the procedure, but when it was over it was over and I was fine :-)

  5. I had an intestinal biopsy (aka, a less invasive kind of endoscopy which is also good for children) to be officially diagnosed as coeliac when I was 15 and my experience with this lovely little privilege we coeliacs have was quite different form yours.
    Generally if you choose to be sedated, in Italy your are given a few drops of anxiolytic and the dizziness fades at maximum in a couple of hours after the procedure. Anyway, I chose not to take drugs and experienced very little discomfort (really, it was no big deal). I also had no tube through my nose, but had to stop eating 12 hours before having the endoscopy and to wait a couple of hours after it to be able to eat again and only soft things. By the late afternoon I was in any case as good as new. 😉

    • That’s brave La Strega! It is interesting to hear about all the different experiences we have…some people on Facebook have said they had much more traumatic experiences, I think it really must depend on the hospital / people treating you. Thanks for commenting :)

      Issi

  6. Lisa says

    Wow! Sounds as though you had a very positive experience with your endoscopy, me on the other hand found the whole process absolutely awful. I had mine done at the private Nuffield health locally to me but I was stupid enough just to have the numbing throat spray this I would never do again if I ever needed the procedure again but I hope to never find myself in that position again. Thank you for sharing your experience :-)

    • Hi Lisa,

      Thanks for sharing yours too! :) So sorry to hear you had a bad experience, I definitely would opt for all the sedation available! Yes even though the procedure itself was unpleasant, I couldn’t fault the staff at Chelsea & Westminster, they made it as bearable as it could be.

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