Genuinely scared

I had my colonoscopy yesterday and it was horrible. I've had them before without problem but it had to be stopped halfway through because there was another severe narrowing in the bowel. They tried to pass the camera through the narrowing but it was so painful I begged them to stop.

Afterwards I was told that if I hadn't heard anything from the consultant within a few days to ring because I shouldn't leave this alone, and I'm actually quite scared. It's natural to think the worst but I just have no idea what could be going on. I'm worried in case this means surgery when I've escaped it so far. Has anyone else experienced anything similar and what was the outcome?

I've had 2 colonoscopys where they were unable to get the scope through(I was sedated so was out). The second one they even tried a pediatric scope with no luck. After that I had a CT for them to see the extent of narrowing and then a surgery consult. I had a resection of 22cm of colon in Feb and I am recovering nicely. Did they use a pediatric scope for ypurs? I'm not sure how the NHS does it but i would demand to be sedated. It is barbaric not to be. They should do a MRE or CT next to see how bad the narrowing is. I went years without surgery from that first failed colonscopy to the second. I had a number of flare ups in between that caused further stricturing that lead to the surgery. Don't be too scared. The next step is to do other diagnostics to determine the extent of narrowing and then see if it can be managed with medication so further damage isn't done. Some of the narrowing could be just from inflammation versus scar tissue. Are you on any medication?

Yes. Ask to be sedated. I found it a lot better to be sedated. Everyone is here to support you.

I was offered to be sedated or to use entonox. I've used that the last 2 times and had no problems. They had to use a paediatric scope when I last had a narrowing but they didn't seem to learn from that and kept trying anyway. I've never known a pain like it. If they suggest another colonoscopy I'm going to refuse unless I'm actually asleep I can't go through all that again.

EvieBaby said:

I was offered to be sedated or to use entonox. I've used that the last 2 times and had no problems. They had to use a paediatric scope when I last had a narrowing but they didn't seem to learn from that and kept trying anyway. I've never known a pain like it. If they suggest another colonoscopy I'm going to refuse unless I'm actually asleep I can't go through all that again.

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Agree

I am still amazed that in other countries it is normal practice to have the patient awake for a colonoscopy. In the U.S. the common practice is to use propofol and put the patient to sleep. I have had all 5 of my colonoscopies that way. I think being awake for the procedure is barbaric.

My first one or two I was awake and it was uncomfortable.

I've have the propofol for the procedure and it's the best part of the colonoscopy. I wake up feeling like I've had a great nap!

Eridon2002 said:

I've have the propofol for the procedure and it's the best part of the colonoscopy. I wake up feeling like I've had a great nap!

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Just had a scope a couple weeks back with propofol I woke up feeling the most rested I've been in years.

I've had propofol and still woke up when they hit the narrow part. They tried balloon dilation and sent me for an MRE which showed around 30cm of inflammation despite being on Humira.

In my case it's likely to be narrowing from inflammation rather than scar tissue as that has recently been removed.
So I'm now on weekly Humira, hoping that will do the trick.
So Eviebaby if they suggest another colonoscopy I would ask if you can do an MRE instead, much more pleasant to prepare for and no pain at all during.
Then I guess it depends on what is causing the narrowing, inflammation or scar tissue as to the next steps. Good luck!

I have woken up during the procedure 1 time, I said something to the staff and they gave me more proprofol.

Sorry you found it so bad, I can really relate. I've had 2 so far. The first I found horrendously painful, the second 3 weeks later was still pretty painful but I learnt how to use the entonox properly! I also found a difference with how was actually doing the procedure. Luckily though for me they didn't have to stop part way through.
If they definitely know there is a tight stricture there, hopefully they will just do an MRI next as I've read they can tell whether it is inflammation or scar tissue. Please don't fear surgery, I know it's a scary thought but was the best decision I made and feel so much better now.

I had my last colonoscopy and an endoscopy in hospital in Bangkok with full sedation, which after 4 with only twilight in the UK in the space of 2 years, was a massive relief.
They've never managed to get into my terminal ileum. Prior to resection, it was because I was too inflamed and, as they discovered during the surgery, my IC valve was too badly damanged.
This last time it's because I have a stricture at the resection site. Doc says it has narrowed to 7mm. That sounds quite scary - not sure what normal is.
I have to go back for another colonoscopy in the next few months and, if my current flare has died down, my GI is going to try a balloon dilation.