Anyone had a colonoscopy that had to be abandoned?

[jjourneys]

Had a dual gastroscopy / colonoscopy yesterday (last has these done 2021, when they went fine), but yesterday the endoscopists (2, who both tried) couldn’t advance the endoscope along my colon / bowel due to too much restriction / turns / and the pain was too much (despite them upping my IV pain and sedation and being on gas and air) and the nurse who was checking on me said about 3/4 x if you want them to stop they can and they can do by CT instead, so had to give up.

Of course I’m now worried and there were questions about had I had previous abdominal surgeries (I haven’t).

I am physically small, low BMI, and these are factors for not being able to do this procedure because of this, but just reaching out in case anyone else had this?

I have chronically bad aneamia and lost 10kg in the last year without trying. And my platelets are too high too.

I'm sorry lovely, no advice but didn't want to read and run. Have they booked the CT in? It must be such a worrying time.

I had a very similar experience at the end of last year. The sedation (which they upped during the procedure) and the gas and air, did nothing at all to lessen the pain.

I returned in January and had the colonoscopy done with deep sedation which means that I was asleep and knew nothing at all about it. I would ask them why they are not suggesting that as a next step.

Yes, i did due to a particularly bendy colon. Was in agony. Had the CT and all ok.

Was noted on my file and they used a different type of scope the next time, and a LOT of sedation, and it worked. Good luck.

I found my last colonoscopy a dreadful experience, and they couldn’t give me anymore sedation as my BP crashed. Apparently I have a ‘bendy colon’. The gastroenterologist was willing to stop but I didn’t allow him to. Needless to say I’m dreading my next one and need to ask my GP about other sedation options.

That’s put my mind at rest re bendy colon experiences a bit … I wouldn’t necessarily have stopped, but my young nurse who sat at my face kept repeating ‘they can stop if you want them to’, and ‘they can do it by CT if needed’ and ‘just say when you want them to stop’, and then after a bit you start to get panicky and they abandoned. The gas and air did nothing, but the doctor was saying things like ‘put another 20 in’ ie my IV and considering I’m already meant to be under sedation I registered a lot of what was going on.

They haven’t booked the colon CT yet, but I’ve had a letter in snail mail for an MRI in 9 days time, so will see what happens over the next week or so (again).

I have UC and am on an IBD FB page. It's fairly common by the postings there by the sound of it. Inflammation and scar tissue.
All the best.

Personally I find it inhuman that in the uk colonoscopy is not routinely done under light sedation. Not your question I know but it really is outrageous.

Not everyone wants or needs it though..... it should be a matter of choice.

I’m in Ireland and I’ve always had a choice - and always chose sleep!

That's true. I've been for a colonoscopy and opted for sedation sedation I can tell you as with @jjourneys, im tiny too and that sedation doesn't work..😓

My last one had to be stopped and the CT scan with balloon wasn’t great either but turned out I had a large tumour on my ovary which was pushing on the bowel - I’ve got crohns and have had many colonoscopies , it’s always really painful when the go round the ‘bend’ even sedated

Thank you for everyone’s supportive replies. I did opt for sedation, but I was first on the list of the day, and they just inject it the sedation and pain relief as they start the procedure, so it’s quite light and you remember everything and can answer questions throughout. I had a sedation years ago for my wisdom teeth to be taken out, and although I could answer questions with that, I couldn’t remember a thing afterwards, which I think is probably the level of sedation you really need with these endoscopy procedures. But anyway …

So had the gastroscopy first with the more senior / older doctor and that went relatively smoothly, and then he handed over to the younger surgeon (probably junior, but I didn’t meet him to speak to, either before or after) for the colonoscopy.

Weirdly, when I had both procedures (in separate appointments) 5 years ago, I remember the gastroscopy to be more uncomfortable than the colonoscopy, so it’s strange that it’s the reverse this time :/ .. I can’t remember there being an issue with the colonoscopy and them not being able to get the endoscope through my bowel before (same level of sedation, and I was approximately same weight and size before).

It started fine, but shortly into it could tell the younger surgeon was having difficulty progressing the scope and he kept trying, called the more senior physician over to help for one try, and then the more senior physician took over and tried on his own too. Each time they were telling the nurse to put another ‘20’ or something in my cannula (sedation/pain relief), plus was on gas and air, which I was trying to calmly breathe in. And the nurse by now was repeatedly saying to me ‘just tell me when you want them to stop, they can do it by CT scan if you need them to’ … so I then said, no stop. The gas and air wasn’t doing anything and you get to a bit of a ‘panic’ stage where you think things are beyond your control, or going wrong, which I got to. They were also asking questions like ‘had I had any abdominal surgeries that I’d forgotten to tell them about’ (no), and explanations about my bowel being quite ‘loopy’. But this kind of fits with me telling GP about my loud stomach noises that people can hear across the other side of a room, and is any of this related to my unexplained weight-loss and severe anemia despite eating relatively normally, not vegetarian or vegan, and now very few periods due to hitting peri / menopause at 50 (so shouldn’t be gynae a reason). Plus now have high platelets and high RBC and high potassium, but too low haemoglobin, ferritin, lots of other parameters … all very strange. Thyroid levels are low (t4 and TSH), but hover on the point of minimum parameters to warrant further investigation.

So next stage is, next Saturday morning I have an MRI appointment, and I also have to wait to hear when they want me back in for the CT of my bowel. But I believe I have to do the ‘prep’ again for that from what I’ve read, so expect that might be in a weeks time too, as I’ll need to start the ‘prep’ Monday or Tuesday.

All a bit of a worry, as just want to make sure nothing dodgy is going on, and I don’t have a group of friends to really talk to, so it’s helpful to have Mumsnet peeps to share with. Weirdly though I’m not a Mum :/ but guess we are all on the same path really. Much love xx

Apols if I’ve repeated myself a bit with the last post, but you all get the gist ha

I’d say nearly half of our CT colonoscopies are done on people who’ve had ‘failed’ colonoscopies. Please don’t worry, it’s very common.

Thank you so much for the reply. I had a standard ‘bottom half’ CT scan last week, so presume because I didn’t have to empty my bowel for that they can’t tell anything from that one. But anyway, your expert knowledge is really appreciated. I’m currently on one of these 2 week ‘urgent cancer diagnosis’ pathways due to blood test results and weightloss, but haven’t got any other symptoms really, and just want to hopefully rule the worst scenarios out for it. Thank you everyone for reading my waffle!

I had to have mine abandoned - I was there for ages. I'm tall and there were too many loops and kinks and I think they got a bit bored! I found it very stressful so maybe that was a factor too.

I had a subsequent CT scan and it was fine. (and I swallowed a camera thing a different time too)

It’s so stupid that the UK doesn’t offer proper sedation.

We only routinely offer light/mild sedation which is often not sufficient or just about works but is traumatic for the patient. I had it for a gastroscopy and it was horrific and it had to be stopped. I later underwent it under proper propofol sedation where I was asleep with no issues.

It is perfectly possible to do a colonoscopy under proper sedation where you are actually asleep - it just costs money and time and the NHS won’t do it. It’s the norm on many countries but we are backwards in that regard.

Thanks ladies, yes not a proper sedation, as you say, and they were trying to get me to move to get a better angle or whatever (on side, then onto back, then back to side, then on back again) and if I was more sedated I’m not sure how that would have been done, but in the end I was involuntarily moving significantly due to the discomfort caused, so at that point I agreed with the nurse repeatedly nodding at me suggesting I stop, and asked to stop …

Im sorry to hear of experiences such as these.

Just wanted to post for anyone reading who is due one that both of mine were fine. I need to have every 3 years and certainly wont be dreading the next one.

Mine was fine 4 years ago, so was presuming would be the same, so I guess you never know?

Mine wasn’t abandoned but it was the most painful experience of my life. I got yelled at for crying and told to shut up because I was scaring the other patients. Maximum dose of sedation but I still remember it very clearly. I’ve had a c-section and have probably got adhesions from the surgery. Not something I’d ever do again without a general anaesthetic and even then I’d be very reluctant.

Mine was due to chronic anaemia as well but nothing suspicious was found. I hope you’re okay OP.

I am physically small, low BMI, and these are factors for not being able to do this procedure because of this

Is this the reason the surgeon gave you- due to being small? Children have scopes done too. My nan was tiny, only 39kg, and had these done every 2yrs without issues.

The common reason for an abandoned colonoscopy if due to poor bowel prep, but I've read of others on MN also having tricky/looped bowels. I too am surprised they don't do it with better sedation. When I had IVF I had 'twilight sedation' and don't recall a thing. Surely that would be a better option if they don't want to give a full GA. It sounds like an awful experience OP and I hope you get some answers soon x

A standard abdominal CT won’t give detail on the bowel, so yes, a CT colonography that has bowel prep will give proper detailed imaging, we can even 3D reconstruct the CT images so that it looks a lot like a ‘camera’ test.

It really irks me that we don’t talk to patients enough, this should’ve all been discussed with you when they said they were referring you for further investigations. Take care @jjourneys

It was all a bit blurrry regarding the questions when we were midst stopping as I was having increasing drugs pumped in and meant to be sedated (!), but the doctor definitely said something about a restricted and loopy colon, and we’re also asking questions about any possible previous abdominal surgeries I’d forgotten like hysterectomy etc (I haven’t had). But I’ve read online subsequently being small can be another reason (I’m 55kg). I did the prep all as instructed but not all the clear water had expelled from my colon by the time of the procedure as I was first on the list at 9am (I did tell them I thought this was the case prior to the procedure, but they didn’t seem to think that would be a problem). You’re meant to take the last pint of liquid at 5am, but I got up about 3am to start taking it as they asked me to as I was the first on the list, and had the whole 500ml.

I know my brain is working overtime 🤦🏼‍♀️ but it has crossed my mind that if my colon is particularly loopy / restricted this could be a reason that a) not all the watery liquid had expelled by 9am b) I get loud gurgling abdominal noises frequently daily that can be heard metres away and c) maybe I’m not getting all the nutrients I should from food due to whatever fault this is in the process. Idk. These are things I’d mention to a doctor who was involved in my diagnosis if I could lol.

Anyway, thanks again for your responses etc x really puts my mind at rest.

Hi OP, so sorry to hear this.
I had a gastroscopy/ colonoscopy Nov 24. I had the usual sedation but it was incredibly painful, I was crying in pain during the procedure. I'm about the same size as you but I don't think that makes a difference really. The doctor doing mine did manage to complete it but said my colon is long and loopy. It said on my paperwork it was 'redundant' I think meaning it's longer than it needs to be so there are lots of loops and turns which is what makes the procedure so painful. My mother has had one and been told the exact same thing so I wonder if it's just how we are made.

I also have chronic anaemia. I am prone to constipation and don't tolerate iron supplements well, so I can never really get it under control because as soon as the supplements start building up in my body I get awful constipation to the point I'm bleeding every time I go, then I stop taking the supplements, then my iron levels drop again. It's maddening. I don't have the unexplained weight loss you have, my weight has been stable for years - this is a symptom you definitely need to investigate in your case.

My sister lives in the USA and says they routinely do colonoscopies under full sedation in her state, she says you are completely asleep. Do we have this option in the UK? I think it's worth asking in your case!