To delay my colonoscopy and remain on waiting list?

[Cherryblossom99]

I’m due to have a colonoscopy in a fortnight and had my pre assessment today over the phone. The colonoscopy is as I have been having random episodes of constipation that last a couple of months and result in only being able to move my bowel with stimulant laxatives. This has been going on about 10 years,I’m in my mid 20’s. I had a long period of a few years where it didn’t happen and now it has started randomly again.
I’m feeling really anxious about getting it done and the consultant also said he doesn’t expect to find anything.
I’m also in recovery from anorexia and worry that the modified diet/fasting the day before is going to trigger my restriction, it can be so addictive.
I asked on the phone and the nurse said I could remain on the waiting list if I didn’t feel able to proceed in 2 weeks but I’m not sure what to do. Does anyone have any advice? Thanks

Have a look into FAP, it’s rare but only can be seen with a colonoscopy. You sadly just need to go down the colonoscopy route, so they can rule out many things. Just do it and know you have much support from everyone on here. Sending hugs, you can do this x

@Cherryblossom99 you poor soul, you’re in such a quandary here and have my sympathy.
Could any of your symptoms be related to your ED?

I had a colonoscopy a few months ago, I was extremely anxious and also had a bad feeling something would go wrong and also that they’d find something.

So the only thing going “wrong” was that the sedation didn’t work and I felt every part of it - but it meant I could work with the nurse and go into all the different positions they needed me to, it was uncomfortable but bearable, and I was glad to be in some level of control.
With gas and air you’ll be in more control than sedation.

The prep isn’t nice but it’s over within a day or two and as someone has said - you don’t feel that hungry with the stuff you have to take.
If you still feel you can’t go through with it - then don’t. Discuss with your gp and see if he is willing to refer you to a GI specialist or if he is willing to take your fears on board and refer for a CT colon.

I will admit that my ED probably has made the symptoms worse, especially since it involved laxative abuse also. However, symptoms definitely started a few years prior to my eating disorder onset.
I think I just need to have a good think about everything and try to work out some sort of management plan, even if I don’t have it in 2 weeks find a way to manage my anxiety better so I can have it in a couple of months

I think the thing that’s worrying me most is the ‘feeling of doom’ and gut feeling that if I get it done on the day I am supposed to something is going to go terribly wrong. If it does I won’t be able to shake that feeling of I knew and I chose to do it anyway

Has anyone talked to you about your eating disorder as a cause of your symptoms? I.E. that irregular, erratic food consumption can change your bowel habits? Eating approximately the same quantity of food every day (over 3 meals) may help. Essentially, if you aren't eating enough, you're unlikely to have regular bowel movements.
Good luck with your recovery from anorexia.

Please get it done I said no to pap smears for years for reasons like this and I ended up with cancer I'll never be able to have a child because I was dumb

I was diagnosed with bowel cancer and I’d had very few symptoms. My main one was anaemia.

A friend has just been diagnosed with stage 3 bowel cancer in his 30s and he’d had symptoms for a number of years. He didn’t go through with the first referral for a colonoscopy because his doctor was so dismissive about it and made him feel like there was really no need for it. He went back a couple of years later with the same symptoms and his doctor was more insistent that he should have it so he did and cancer was found.

I understand you’re worried about something going wrong and blaming yourself for having the procedure. But there’s also a risk that they might find something and if you put it off you’ll be blaming yourself for that, just as my friend is. He needs chemo and it’s possible he might have been able to only have surgery if they found it sooner.

Do you mean you’re worried you’ll go home with a perforated bowel and no one will know and you’ll be worrying about it? Apart from the fact they’ll be looking with a camera at your bowel so will see a perforation immediately and will know what to look for and what to do to avoid one, they’ll also give you aftercare including things to look out for aka rectal bleeding, pain, etc. If you share with the nurse this is what you’re worried about they can give you more detailed information. However as it’s a rare but serious complication they will be vigilant to it and be ensuring they are following best safe practice.

I had it done about 3 years ago and although it obviously wasn’t pleasant it was still bearable.

I didn’t have to do any kind of fasting in preparation for it and just had an enema about 5-10 minutes before the procedure.

I didn’t have sedation for the procedure either, I just gritted my teeth and tried to distract myself.

Yes that’s my main worry or happening that kills me. The letter with the appointment information included all these risks including risk of perforation that may require a colectomy (1 in 1000) and death (1 in 15000).
There was information about rectal bleeding and abdominal pain etc to go to A&E immediately and I know what my brain is like. I will constantly be monitoring myself for symptoms and panicking

Like I’m not scared of the pain or embarrassment. I’m just terrified of a complication, plus the effect on my ED

I know I sound ridiculous, the most ironic thing is that I am educated, have a post graduate degree and a career in a not too distantly related field 😭

Anxiety has no relation to Education level.
But I would suggest this is something you should also be discussing with your GP.
The procedure isn’t too bad - I always got a Sandwich afterwards, because they are checking that you can eat and drink, they won’t let you go home before that. They also need someone to be with you for 24hrs after a sedative.
The first time I had it I was pretty much knocked out and was only conscious at the end. The second one I was conscious but very much sedated throughout.
I doubt it would trigger ED, as you aren’t depriving yourself of food as such. It might also indicate something like Coeliacs - which could be triggered by Bagels - just don’t avoid Gluten until they’ve diagnosed. I was diagnosed with B12 deficiency, which hadn’t been clear before.
and yes you could have problems that lead to Bowel Cancer or something else that is not going to get better without intervention.

I know it’s just that I’ve had so many people say things like “you’re smarter than this” and “you know all about this stuff” etc when I’ve been anxious over things in the past. It doesn’t help.
I have always been very anxious though, even as a child. I’ve had obsessions, fears and compulsions probably from about 10 or 11. When I was 16 a psychologist suspected I had OCD but this was never followed up on

I had a colonoscopy yesterday, with light sedation. I can honestly say the anxiety leading up was far worse than the procedure. I think the fact you get the results immediately can cause worry as I spent the time leading up envisioning either seeing a tumour on the screen, or dealing with difficult news in recovery. I did get a diagnosis but it wasn’t cancer and I can have treatment and make diet changes which after months of googling my symptoms and fearing the worst is a huge relief. Like any medical procedure they have to tell you about even a minuscule risk of perforation etc. If you are unwell enough to visit your doctor to seek help for your symptoms I would advise you to follow up the referral so you can take back some control of your physical and mental health. The prep is unlikely to trigger any aspect of your ED as it’s not calorie restrictive. It’s fresh in my mind so feel free to pm me if you have any worries about the prep or procedure.

Nothing scares me about sedation. The problem is that if anything goes up my bum while I am conscious, and especially if a bit sedated so I feel la de la and not in complete control I will have a full on PTSD flashback to when I was spiked and anally raped. I will be kicking screaming and running for my life. NHS staff don’t deserve to be kicked in the face by me. It is the being conscious while something is stuck up my bum that I simply cannot do.

So if they have to do one, fine I need GA for it so I am unconscious and have no memory of it or they need to do a CT scan or MRI or whatever.

Perhaps it wasn't clear, but my post and my questions were towards the op who had expressed worries and questions about alternatives. I only quoted your post to explain that CT is not a like-for-like alternative to a colonoscopy so that the op could make informed choices. I am not sure that your graphic and aggressive response is going to help the op who also has a history of trauma.

Speaking to you, you can ask to have colonoscopy under GA. A CT or MRI won't get the same detail - they could very easily miss critical issues which would harm you. As a trauma survivor you are entitled to the same standard of care and investigation with reasonable adjustments to meet your needs. I hope that your GP explained to you precisely how inferior CT is compared to colonoscopy and offered you colonoscopy under GA, rather than simply referring you for an inferior test.

CT images reveal so little compared to colonoscopy (where they can also take biopsies and remove polyps) - if you need a colonoscopy you will be seriously disadvantaged by only having a CT instead. Google CT images of the colon and you can see for yourself just how rubbish and uninformative they are compared to colonoscopy images.

Nobody here has suggested that NHS staff deserve to be kicked in the face by you, that's a very weird take. You do deserve to receive the same standard of care as someone without a trauma history, and if that means your GP referring you for a colonoscopy under GA that is what they should have done.

Okay, so acknowledge that to yourself and the nurse. Make a plan of what you’ll do if you’re concerned; what would help? Would it be more information? Ask them to talk you through how they check your bowel hasn’t been perforated, and also the signs this has occurred. Having had one I assure you you couldn’t and wouldn’t leave with a perforated bowel and not know, any little bleed or swelling would be observed and checked. I had no pain or bleeding after mine; I was tired & hungry but felt absolutely fine.

No you weren’t clear in your post, you quoted my post, then referred to me as “you” and “your”throughout. At no point in your reply did you indicate you were directing your comments to the OP instead of me.

Your advice was patronising, suggesting I would benefit from a more detailed discussion on sedation levels so I could feel in control, and the idiotic comment that “recognising what is happening is important to managing the anxiety” this is fine for someone who has normal anxiety, not for someone with an anxiety disorder like PTSD or Anorexia esp where the knowing what is happening is actually a trigger for the anxiety disorder. The “Can you plan a reward for yourself in the weeks afterwards so you have something to look forward to?” I’m not sure how saying think of a reward would put me in control at all, and it’s a bit infantilising. Women are not toddlers to be bribed to be good for the doctor by being given a sticker and a lollipop afterwards as a reward if we are brave.

I felt a description of what a panic attack looks like due to PTSD by a SA survivor (including possibly unintentionally kicking a nurse) was the best way to illustrate that your advice, while well meaning, really is for the average person who has normal anxiety levels and isn’t going to panic and go into fight and flight mode.

It’s a bland list of foods so you’ll be eating these. These bowel clear out is done by drinking the preparation so you’ll feel full. Book an appointment for afterwards with an eating disorders specialist so that you can talk through the experience and get support in case you need this.

I agree OP - I've lost count of number of times things have been "explained" to me and "why they are important". Did you manage to get anywhere with GA or "enhanced (propofol) sedation" in the end? My last interaction on this subject was a private consultant admitting that propofol sedation wasn't available at his clinic - he also rubbished feedback I'd got of several others that they were in distress on the standard Mid/Fent sedation - so that was the end of that. I read somewhere a standard colonoscopy cost internally to the NHS was < £400 so that explains why there are happy to "try" even if the patient requests otherwise.