• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Colonoscopy & upper GI done... warning not a good experience

Location
Scotand
I got my scopes done yesterday and it was one of the most horrific thing's that have happened. For a few weeks I have already been feeling a lot nausea and vomiting in the morning... So when the scope was put in which felt very tight around my throat, I started vomiting, they kept telling me to relax which was just so inconsiderate as I was able to talk. The results from that were I have a hiatus hernia of 3cm and a benign inflammatory tumour in my oesophagus (38cm down), Stomach and duodenum normal. My colonoscopy was also very painful, they knocked every corner, I had to go on my back to get around the splenic flecture, which will have to be known for any future scopes, I was given 5 doses of the sedation and a dose of fentanyl which I didn't feel. My colon was normal, there was some granulation on my terminal ileum. If only I'd gotten the scope a month ago because it definitely would of been inflamed, but none the less the biopsies will reveal properly if there's been chronic inflammation. The surgeon said I shouldn't have a diagnosis now but I will most likely be diagnosed with Crohn's iletius. So there it is... I know it may not be helpful for those awaiting scopes, but you can't just want to hear about the peaceful experiences which my mum tried to drill into me. One good thing I can take from it is that I definitely won't need to think about is a colostomy bag in the near future. Good luck to everyone else trying to get a diagnosis and treatment.
 
Location
UK
I got my scopes done yesterday and it was one of the most horrific thing's that have happened. For a few weeks I have already been feeling a lot nausea and vomiting in the morning... So when the scope was put in which felt very tight around my throat, I started vomiting, they kept telling me to relax which was just so inconsiderate as I was able to talk. The results from that were I have a hiatus hernia of 3cm and a benign inflammatory tumour in my oesophagus (38cm down), Stomach and duodenum normal. My colonoscopy was also very painful, they knocked every corner, I had to go on my back to get around the splenic flecture, which will have to be known for any future scopes, I was given 5 doses of the sedation and a dose of fentanyl which I didn't feel. My colon was normal, there was some granulation on my terminal ileum. If only I'd gotten the scope a month ago because it definitely would of been inflamed, but none the less the biopsies will reveal properly if there's been chronic inflammation. The surgeon said I shouldn't have a diagnosis now but I will most likely be diagnosed with Crohn's iletius. So there it is... I know it may not be helpful for those awaiting scopes, but you can't just want to hear about the peaceful experiences which my mum tried to drill into me. One good thing I can take from it is that I definitely won't need to think about is a colostomy bag in the near future. Good luck to everyone else trying to get a diagnosis and treatment.
sorry to hear you had a horrible experience...I have to agree as i had a horrednous colonoscopy done by a locum consultant and i was really shocked as everyone had said theres had gone so smooth but mine certainly was not and has put me off having another but thats not really an option as i need to be checked at some point. they should defo have a protocol incase the sedation doesnt make patients sleepy enough
 
Location
San Diego
It's been my informal observation that most and perhaps nearly all of the forum members who report very unpleasant or painful endoscopies or colonoscopies are from the UK. Which makes me wonder whether either NHS rules and/or customary British medical practice calls for using less sedation than is commonly used in the US.

For all of my various scoping procedures over the years, both upper and lower, I've been so sedated that I was barely aware that the procedure was even happening (the so-called "twilight sleep") and have little or no recollection of it afterward.
 
For my upper endoscopies I am always asleep before they insert the scope. Typically they use Versed (midazolam) and Fentanyl here in the US for adults. I’m a bit more aware for the colonoscopies, but they’re not really painful although I have a redundant loop of colon that makes it hard to get to the terminal ileum. So sorry yours were so awful. I cannot believe you were awake for an upper endoscopy.
 

Lady Organic

Moderator
Staff member
I get Versed and Fentanyl for full colonoscopies. I love it when the drugs knock me down, best feeling ever! I remember 2 out of 8 maybe colonoscopies that sedation did not work and the pain was horrible. This happens occasionnaly unfortunately. When I am in the waiting room, I occasionnaly hear a person screaming for this exam, not very cool...

I never use the sedation for short colonoscopies as I want to watch live on tv! My first GI was only doing short scopes without sedation, so I learned the hard way.

I had an upper endoscopy and was offred throat aneasthesic only. I highly recommend asking for full sedation for upper endoscopy. It is really aweful and disgusting. Wanting to throw up real bad the whole time. My Gi kept telling me not to move, but I was just unable to stop the hard vomit reflex with louad noises, yuck...

In my experience, I think upper endoscopy is worst than colonoscopy when sedation is not working. Colonoscopy is more painful, but upper endoscopy is way more uncomfortable and disgusting, you feel sick litteraly.
 

Maya142

Moderator
Staff member
In the US, they are starting to use Propofol more and more for scopes. At least, the hospitals we have been to all use Propofol.

You are more asleep with Propofol than with Versed/Fentanyl (twilight sedation). My daughter says she falls asleep within seconds and then wakes up in recovery. No pain or discomfort at all.

She used to have scopes with general anesthesia, and says there's no real difference between that and Propofol - she feels equally asleep with Propofol but wakes up more quickly.

I would not want to her to have less sedation with scopes. She's going to need them every few years for her whole life, so I don't want her to avoid them because of fear of pain or discomfort.

I know in the UK they do not use this kind of sedation, probably due to cost. But I have only heard of awful scope experiences on the forum from UK members :(.

I have a niece who had an upper endoscopy in the UK - no sedation, just numbing spray. Her father could hear her screaming and retching from the waiting room. She was 17 but considered an adult by the NHS (in contrast, most young adults in the US will stay with their pediatric GIs through college, often till 22-23).

The whole thing was so traumatic that she says she'll never have a scope again.
 

emmaaaargh

Moderator
Staff member
Allow me to provide a positive UK scope story! My last colonoscopy was the first colonoscopy I had as an adult under NHS care - I was given 1.5mg of midazolam and 75mcg of Fentanyl. The procedure itself was excellent: I was conscious but felt less anxiety than I had even in my everyday life for years. It was uncomfortable on the verge of painful when my transverse colon decided it didn't want to allow the scope through and kept collapsing, but that was no worse than my worst case of trapped wind. We made it through to the terminal ileum and I watched the entire thing on the screen. Of course, the endoscopist and her nursing team were hugely important in making sure that I felt as comfortable as possible and reassured the entire time - bedside manner is probably more important in this situation than almost anywhere else!!

It's true that in the UK, twilight sedation (or full anaesthesia) is not offered as standard to adults, because it requires an anaesthetist to monitor the patient while it's happening. For most patients, this is unnecessary because they aren't likely to experience significant pain or discomfort during the procedure... but people with IBD aren't most patients. Unfortunately, we're more likely to see a higher incidence of unpleasant colonoscopies, just because of the nature of our disease. You'd think that someone would realise this, and offer an increased level of sedation to patients who are at-risk of an extremely painful/complex scope, like those of us with IBD, but either nobody has put that forward or we simply aren't important enough to warrant it.

I think one of the most important things when getting a scope is feeling listened to. If the endoscopist is willing to listen to a patient who is in pain, or anxious, and explain what they are doing/why, and work out a plan (more sedation? more painkillers? if not, why not?), then that helps massively. When a patient is vaguely sedated but not enough (and so their brain is already working at a disadvantage!) and trying to communicate pain or discomfort and not being heard, that is incredibly distressing. The sad thing is that for many patients, it's not easy to simply get a scope done at another centre or guarantee it will be done by a specific person :(
 
Top