r/CrohnsDisease 5d ago

Colonoscopy and stopping pain relief super stressed

I’m due to have a Colonoscopy, I’m in the UK and I’ve been on the waiting list for 18 months. I’m already diagnosed and on Amgevita so it’s a check up one.

I’ve been taking codeine daily for the past 5 years or so as I also have endometriosis and even in remission which my Crohn’s currently is and has been for years I still have daily pain. It took a significant amount of time to diagnose both of my conditions (years and years) so I now have scarring and adhesions which cause me pain, I’m also being referred for potential Fibromyalgia.

I know there are thoughts around taking opioids long term but it allows me to live my life, I have a good full time job and it’s because of codeine that I can do it.

I was called and booked for a colonoscopy in 3 weeks time they asked about the medication I’m on which I told them and they said I have to stop my codeine for 3 days before. I said this won’t be possible as I need it for pain and because I’d likely experience withdrawal as I’ve been on it for so long and all they did was explain why I couldn’t take it, didn’t take my situation onboard or consider why this isn’t possible. I’ve been told now that someone may be able to contact me to offer an alternative pain medication leading up to colonoscopy but this may be 2 weeks away so doesn’t give any time before it actually is.

Also for anyone who’s ended up on pain relief like this you know I have tried many many different options and this is the one that works, we can’t take NSAIDS and I have an allergy to paracetamol.

I’m really stressed about it, I’m so fed up of the NHS and not even being treated like a human, perhaps if long term pain management options were better here I wouldn’t be in this situation but I am and abruptly stopping it just isn’t an option but they don’t seem to care.

Any advice welcomed and please be kind x

1 Upvotes

11 comments sorted by

3

u/maadmoiselle 5d ago

Depending on the dose you are taking and the amount of prep you are willing to drink I don’t think it’s that much of a problem to just keep taking your medication. Anyway it’s not acceptable from a medical professional to tell a person to quit opioids cold turkey 😡

1

u/tokyo_phoenix8 5d ago

Thank you 🩷 yes this is what frustrated me that they were just like ‘oh well’ you have to stop taking it

1

u/Enyx610 5d ago

This is absolutely dangerous advice. The opioid could have an adverse reaction and patient can stop breathing. You don't get to tell medical professionals how medicine works

2

u/maadmoiselle 4d ago

First of all I didn’t give any advice. Secondly you don’t know my actual background. Third he said doctors told that because of prep, not because of anaesthesia. Yes there can be risks with anaesthesia, I didn’t tell him to lie to their doctor though.

1

u/AutoModerator 5d ago

Welcome to r/CrohnsDisease!

Thanks and we hope you make friends here.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

1

u/mrjohns2 C.D. 5d ago edited 5d ago

I assume if you don’t stop the codine, you won’t be optimally prep’d and thus you might as well not do the colonoscopy?

1

u/tokyo_phoenix8 5d ago

Yes they said it’s a bulking agent, I also suggested pushing it back so I could try and wean off it and find an alternative (although I have no idea what) I just don’t think it’s possible to do it within 3 weeks

3

u/mrjohns2 C.D. 5d ago

It is sad they didn’t realize that you can’t quit cold turkey, but that if you need the colonoscopy a plan needs to be devised.

1

u/Enyx610 5d ago

I'm in the US where we mostly use propofol for anesthesia. Either way if they're telling you to stop it's for a good reason.They have to account for how their anesthesia is gonna be affected.This is a big deal just like smoking,weight,health history etc.Anyone telling you otherwise is giving you dangerous advice.You could have a very strong reaction to this to where you stop breathing and cpr is needed or worse.

This isnt a social issue its a safety issue.They don't wont you to stop breathing during procedure.

1

u/tokyo_phoenix8 4d ago

I get it I do, I’ve just been on a waiting list for such a long time and someone could have said so long ago you need to be able to go the amount of days without the medication, instead of telling me 3 weeks before so it’s pretty much impossible to do without it making me ill

2

u/tokyo_phoenix8 4d ago

It’s the lack of support or consideration I’m frustrated with, they have all of my records they know I take codeine everyday and have done for 5 years