Severely painful colonoscopy and "bendy" bowel

[Bluebellsfortwo]

Did anyone have a colonoscopy and struggled with really bad pain during it?

I had my colonoscopy today with conscious sedation" - fentanyl and midazolam and was very much awake during it and didn't even feel sleepy. As soon as they began, I felt intense pain like someone had shoved a sharp stick in my insides and was pushing it around violently. I was writhing around in pain, crying loudly in pain, it was awful. I didn't understand why it hurt so much and I asked for gas and air which they had in the room, but was told I couldn't have it because I hadn't signed for it beforehand, so then I said please I'll sign it now, and they said I can't sign anything because I'm technically sedated.

They gave me an extra dose of fentanyl and I was still crying and screaming in pain. My blood pressure and pulse was becoming too high (185/100, pulse was like 150) so they said to me 'if you don't calm down right now we are going to stop and you'll have to do this all over again'. So I silently cried lying there on the table . It was so horrible. I feel so violated 😢

Afterwards the doctor told me I have a "extremely bendy bowel" which meant it was very difficult to manoeuvre the scope and my bowel was so twisty to the point where the scope became twisted on itself and had to be disconnected and reconnected again. The consultant asked me questions like, have you had a lot of C-sections, have you had significant pelvic surgeries which can cause adhesions? And the answer to all of these is no. Apart from that the colonoscopy was completely clear, no issues found at all.

I'm just really confused. I'm home now and struggling a lot with pain from terrible trapped gas. I just wanted to know if anyone had gone through anything similar. Everything I looked up beforehand was people saying it doesn't hurt at all but it wasn't the case for me 😔

I've had them and they've never been like that. So sorry, it sounds awful and the staff didn't seem reassuring. What was it being done to investigate?

@IndifferentFeet thank you. It was done to investigate chronic constipation and near constant rectal bleeding. But apparently they didn't even find a single haemmorhoid... I'm more confused today than I was before I had it.

Yes: mine are usually like that. Have to have them regularly for ibd and now I just ask for maximum dose sedation right from the start. Last one was the first time they've got all the way round. All down to lots of loops and bendiness apparently.
I also always ask to hold the nurse's hand and let them know I might cry!

Yes i had this, they had to abandon my first one. The next time they used a special scope for people with bendy bowels, and tranqed me up to the eyeballs.
Much better.

I just wanted to add that I don't have a low pain threshold. I have given birth without pain relief and the pain I felt today was genuinely at the same level as active (8cm+) labour contractions!!

I had one several years ago and it was hideous. I was screaming and kicking and it was so painful. Made worse by staff treating a like a idiot child.

I'm supposed to have them regularly but I can't face doing it again.

I'm so glad you had a better experience the following time. They did finish mine because the thought of going through it again was too much to bear so I forced myself to bear the pain. And once they passed the 'bendy' part, the last part of the scope was actually completely fine and painfree because the bowel was "straight" like a "normal bowel" according to them. I'm hoping I never have to do this ever again

Yep mine was excruciatingly painful as well. I had maximum pain relief which was also topped up during the procedure but I was still screaming and crying with the pain. I also remember being told to shut up because I was scaring the other patients. I did have a c-section though and have adhesions so that’s probably the reason. No way will I ever have another one.

I hope you’re okay OP.

I'm sorry yours are the same, but glad to know it's not just me. I'm hoping I never have to do it again. I can't believe the level of sedation offered here, I only felt mildly sleepy and fuzzy. In other countries like the U.S you're completely knocked out!

It's awful isn't it. It felt really violating to me. I don't think I can ever do it again.

I'm so sorry for your experience! It sounds very similar to mine. I felt like they just didn't care and the way they spoke to me felt quite humiliating.
I suspect I have endometriosis so I wonder if that's also linked as it also causes adhesions and often they're on the bowel.

That’s exactly how I felt @Bluebellsfortwo The staff were really unpleasant to me, I’m sorry you had the same experience. I expect your endometriosis played a large part in your pain. When I looked at my notes afterwards, they said I was a difficult patient!

When I had mine I asked for G&A half way through and they gave it willingly, and it helped. I don’t recall being asked before but it was several years ago.

That sounds awful. I just had gas and air and, apart from one brief 'ouch' moment (going round a corner) it was completely painless for me. I think you were unlucky and I'm sorry it hurt so much for you.

I had a colonoscopy a couple of years back that was horrible. The doctor was nice enough and explained that I have a very loopy bowel, but that didn't make it any easier. I'm now wondering if my open incision hysterectomy could have made the procedure more difficult for them and for me as I might well have an adhesion or two lurking in there. I don't have much of a pain threshold, but I'd had a colonoscopy before and it was a breeze. I was even comfortable enough to stare at the screen, fixated by my pink, wriggly insides.

This time was completely different. It was really nasty and if I never have to go through it again, it will be too soon. The doctor couldn't find anything, but she wasn't completely happy, so she referred me for a colonoscopy MRI - for that, you have a scan instead of a camera and you can even have breakfast as long as it's a low-residue one. A retired nurse friend says she wishes everybody could have an MRI colonoscopy instead of the camera sort, but it's a lot more expensive.

So sorry you went through this. Exactly the same thing happened to me last week in my second colonoscopy.
I had my fentanyl and midazolam and felt no effects, it was so painful I was 'ouching' verbally - they had to get me to lie on my back and lean on my abdomen and then move to the left again a few times. They also topped up the fentanyl and gave buscopan.
I never knew I had a loopy bowel, I have had a groin hernia repair since my last colonoscopy but that is the only difference.
The report said it was a 'complicated procedure' but the patient was in mild discomfort - no it was bloody painful agony - I was trying my best not to scream!
My first colonoscopy 2.5 years ago was a breeze compared to this, a bit ouchy in the corners and that's what I was expecting last week.
I also had awful wind that evening/night and barely slept. Thankfully it was the weekend so I didn't have to get up for work as I was a wreck!
If I ever have to have another one I'm going to ask to be dosed up to the eyeballs!

Yes! Also told mine was long and loopy. I get issues with slow digestion and trapped gas. From googling afterwards, I did read that women are much more likely to have a long and bendy colon. So I wonder are we actually unusual or just different from the standard anatomy based on men?

I’m sorry you had such an awful experience. Mine was exactly the same- 20 years ago now but I remember it so clearly. And like you I’m someone who generally manages pain well - I have lupus and other chronic pain issues and generally muddle through whilst others would go to bed! I can only put it down to the IBS that I have. The staff were very unsympathetic just like yours, it was really horrible and I felt violated too. I would never have another without being put to sleep for it.

Conversely my dh had one a few weeks ago and only had gas and air and found it absolutely fine! 😳

Yes mine are like that, it is because my bowel goes into spasm every time. Last time was better than normal because I reiterated that this happens and that I wanted plenty of sedation.

Oh my dear, how awful. I've had a lot of colonoscopies over the years and a few have been quite painful and they've had to stop.

I think that some days can be better or worse than others.

I now always insist on the heaviest possible sedation.

Take care

Mine was like this. I'd had no pain relief beforehand, although the nurse got me gas and air after a while. My notes later said that I 'became hysterical'. It was agony.

Hi OP. I have had a very painful one too, and so has my mum. The sedation did work for me, but it felt like a dreamt it, and I do remember the pain. I definitely shouted a lot and asked them to stop several times which they did. They topped up the sedation part way through. Unlike your experience, the staff in mine were absolutely lovely. I think that makes all the difference because I did not feel violated afterwards. Same as you, I was told I had a very long loopy bowel. I also suffer from constipation.

Just thought I'd come on and warn you that about 24-48 hours after mine I got horrendous lower back pain. I ended up calling the unit and speaking to them about it and apparently it is normal particularly where the procedure has been difficult. Ibuprofen helped a lot.

I have never had a colonoscopy without sedation . Very few people do the nurse told me unless they choose to do so . I have a floppy bowel I was told . Can't believe how many of you have had this done with just pain relief and remain conscious.

It’s NHS being too tight and lazy to use proper sedation. As noted in the US it is standard. It’s utterly unacceptable IMO.

There are private facilities that use propofol sedation in the UK too. It may be achievable on the NHS too but as it requires an anaesthetist they don’t want to do it so won’t offer it. Being very firm up front that you won’t have the “sedation” they offer as it is not suitable might work.

They also favour it as while it doesn’t stop the pain it often makes the patient forget.

That sounds awful OP. I too had no idea that anything other than a general anesthetic was even an option for a colonoscopy! I live in the UK, with family abroad. My mum and nan had regular ones, and all were under a GA.

If you need another, I'd ask/insist on a GA!