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

When I had mine, I had an enema on the morning of the procedure. It wasn't pleasant but it didn't involve any food or drink issues and it did the job. Could that be an alternative you could ask for?

A biased view here, but when my bowel cancer was diagnosed at age 31, the surgeon estimated that it had been growing for 10 years. They weren’t expecting to find anything either, but shit things happen every day. I would push through it if you possibly can. Staying on the list won’t change anything.

Why would you not have it done? Nobody likes having things like that or looks forward to it but at least you will no if it's anything sinister or not ( likely not).

I know it sounds dumb but I’m really anxious about it in general, on top of the eating thing I’m scared of them perforating my bowel or dying. The risk form said the risk of death was 1 in 15000 and despite knowing how irrational it is, I just have a bad feeling that something is going to go wrong

Sorry to sound unhelpful OP, but if you feel that way, nothing we can say is going to persuade you that it's all going to be fine.

In your shoes however, I would definitely go ahead with it, as if it is something bad, then the sooner it's found, the better your chances of survival, and if it proves to be nothing, then it will put your mind at rest going forward. To me, having it done is really a win/win situation.

I think maybe if you're this worried about the whole thing, then it might be a good idea to have a chat with your GP about it, or even ask to speak to the surgeon beforehand, as you can pull out at any time, if you really feel you can't deal with it.

I was supposed to have one a few years back but I decided it sounded far too traumatic. Sedation doesn't work very well on me so I'd have to be conscious. The gastroenterologist was pretty dismissive about my symptoms when I spoke to him, so I decided to avoid it.

It's a few years on now and I'm still having the same issues so part of me wishes I'd just got it done. I do have bowel cancer in my family so it is still a nagging worry.

I don't know if that helps in any way but that was my experience of putting it off.

Could you speak to your GP about your anxiety? Not going ahead and remaining on the waiting list isn't really going to help you much - if anxiety is what is putting you off having the procedure, then without support, you'll probably still be anxious about having it done in 3 or 6 months.

I think it's better to go ahead - if it's all clear, it will really put your mind at rest and if they find something, the sooner you get treatment to sort out the issues.

I had a very similar experience with my consultant, he would even let me explain my symptoms properly and kept cutting me off. I think my issues are more related to slow transit and I have noticed that with the last couple of flare ups it has been after I had ate bagels so I was planning to avoid them and see what happens.
There isn’t any history of bowel cancer in my family (not that that makes getting it impossible) so I can only imagine the anxiety that you are dealing with

Exactly, I guess I’m hoping that the symptoms will have gone if I’m more careful about avoiding things that seem to trigger it.
I am waiting for a mental health assessment as I likely have ADHD with associated anxiety, I have ALWAYS been a very anxious person so I’m not really sure what the GP will be able to suggest

Yeah mine was like that when he spoke to me. Very sharp and dismissive. He told me repeatedly that it was just IBS. It took me over 2 years to get that appointment too.

I'm in two minds about whether I should have gone through with it anyway, but I find the hospital and medical procedures of that nature very traumatic. He really didn't make it sound like it was worth it.

You should go and get it done, chances are it will be ok but who knows - you don’t and neither does your doctor. It’s big girl pants time but on this occasion take them off. Talk to GP about your issues and get help.

The risk of perforation is minuscule (and even perforation == instant death or anything!) I’ve had a colonoscopy every year since 2006 and nothing has ever gone even slightly wrong. As PP said, nobody enjoys them, but they can actually save your life.

I’m sorry for your understandable worries. Maybe try and put it in the category of going to the dentist, it’s the thought and dread of it but once you build up your inner reserve and strength, you will feel so proud of yourself for overcoming it. You can do it, you’ve overcome anorexia which is just amazing and shows what an incredible person you are when you decide to face your fears. Your GP should be able to prescribe something to help you feel calmer and as a previous post said, there’s alternatives to the laxatives. You can do this 💪
just speaking from experience with both my 20 something daughters, it’s better to get it sorted at an early stage and not fall off the waiting lists . You’ve got this and can look forward to doing something that enriches you afterwards x

That's only for sigmoidoscopy. They can't use enema as bowel prep for colonoscopy because they need the entire colon empty, not just the descending colon like for sigmoidoscopy.

The modified diet isn't a calorie restriction, it's a fibre reduction. The fasting is basically while you're taking the laxatives, which won't feel like fasting normally does. The volume of fluid you have to drink while doing the bowel prep will make you feel full throughout that period.

And if you're having sedation, you mustn't take any other form of sedative beforehand (whether over-the-counter antihistamines or prescribed) because that would be dangerous.

Are you more anxious about the prep or the procedure? If it's the procedure, you could ask for a referral to have it done under deeper sedation rather than conscious sedation.

You could also ask for a colonic transit study first (x-ray) but the results of that may just lead to another colonoscopy referral.

It would also be better for you in the long run to identify conclusively the real source of the problem rather than tinkering with your diet and guessing and remaining anxious. That could just drag it on for more years without achieving anything, only to find yourself in a worse situation later.

If you think it's diet related there are tests they can do, but not if you've already started trying to cut out food groups (which you also shouldn't do without dietitian input - and presumably has a greater long term risk of triggering the disordered eating than 12 hours of fasting alongside bowel prep?).

If you need to delay so you have time to put better support or other arrangements in place, that could be the right answer for you and you have every right to ask for better support if you need it. But don't just delay indefinitely without any real plans to properly resolve your long term problem, as that won't help you.

They won't let you stay on the waiting list indefinitely as that would mess with their stats - usually they only let you decline a maximum of 2 offered appointments before removing you, so keep that in mind too.

I’ve been referred to gastroenterology as well as my GP said I need a colonoscopy. When I told her I would need to be knocked out to do it as a SA survivor, she said she could request it be a CT scan instead as she could understand why I’d be too anxious to undergo one while awake.

Your anxiety is just as real as mine, albeit for different reasons. Can you ask for a CT scan instead? Or failing that, to be put under with GA and not be awake for it?

I think I’m scared of both aspects to be honest, I’m scared of the actual procedure, the sedation (I asked for gas and air) and the aftermath. I’m going to be constantly monitoring myself in case something goes wrong afterwards.
I know people might find me very frustrating, I frustrate myself. This is yet another thing that anxiety is getting in the way of.
I’m not meaning to drip feed, but I experienced a lot of childhood trauma growing up and it has left me a person that is anxious and obsesses over everything, but generally functional as long as I minimise dangers as much as possible. I’m terrified of not being in control and the thought of complications from a procedure and the effects really panic me.

I've just consulted with Dr. Google, and it seems totally OK to go for a general anaesthetic for this procedure OP, in fact it's actually recommended for people who suffer from severe anxiety. Speak to your Consultant about this beforehand, that way you won't know anything about what's happening, until it's all over. I know you'll still worry in the run up to having it done, but perhaps try practising some relaxation techniques to help you cope with that.

You are deferring the inevitable. There probably will never be a right time and you will at least have some idea of what is going on or not.

A CT won't be able to provide the same level of information because there are lots of things they won't be able to see. An MRI is better than a CT and a colonoscopy is better than both. Chances are they'd still need to do a colonoscopy afterwards.

If you were going to have colonoscopy under GA you would need to be referred and booked in to a different clinic list to the one you're on now as the normal list for no sedation/conscious sedation won't be set up with anaesthetists etc to do GA. The risks and requirements are different and how easily you can access a colonoscopy under GA in an NHS hospital will depend on your trust. (By contrast, higher levels of sedation for colonoscopy are more routine in the US than in the UK.)

What scares you about the sedation? The level of sedation you have is your choice but make sure it's an informed choice so you feel well prepared and in control. Most people have colonoscopy with intravenous conscious sedation. Gas and air tends to be offered on top of that if you're struggling with discomfort. For someone as anxious as you sound, I think trying to have your first colonoscopy with just gas and air would be difficult.

Maybe you would benefit from a more detailed discussion about sedation levels and what they mean so you can make an informed choice that makes you feel in control. Recognising all the steps here where you are in control of what's happening is important to managing the anxiety.

It's normal to be worried especially with your background, so plan ways to manage that. E.g. if you're feeling worried afterwards, how could you distract and care for yourself? What strategies can you plan to use? Can you plan a reward for yourself in the weeks afterwards so you have something to look forward to? All these things give you back control which in turn will take the edge off the anxiety.

One way to look at this situation is that the colonoscopy would be a short period of high anxiety followed by release from that anxiety and answers to a decade of uncertainty. The alternative is long term lingering anxiety ("what if there's something terribly wrong inside me?"). These are all your choices to make but evaluating them can help you make the best choices for you and decide on a plan to help you through.

Watched someone die of bowel cancer last year who never got the chance to be tested. We would have killed for any early symptoms or hints that could have helped.

Just get it done. I've had it, it's not a big deal.

I can totally understand the fear OP, but what will delaying it achieve, you will just worry for longer. The chances are it will come back clear, have the procedure as agreed. Good luck.

Is it possible to have bowel cancer tho for over 10 years (symptoms starting at age 15)? With none of the “classic” symptoms? Prior to this I have had stool samples including calprotectin and fit tests, all came back as normal
even the doctor said he isn’t expecting anything to show

I know I’m being irrational, I’m not looking to argue with anyone (I know I posted on AIBU). I guess I was just looking more perspectives. I just don’t want to be panicking after the procedure waiting for symptoms that something has gone wrong to show.
I guess this is another example of why I need support for my anxiety.

I'm not going to comment on the anorexia side of things as I have no experience in that but I have had 3 colonoscopys without sedation or anything and there really not bad. The prep is awful but the actual colonoscopy is absolutely fine you put on a gown on have a cannula fitted then lay on a bed on your left hand side you get to watch it on the screen and a nurse sits next to your head just chatting away to distract you. I actually found it interesting watching it. They didn't think they would find anything on mine but they found polyps that had to be removed again this doesn't hurt. Then afterwards you go on to a little ward thing have a cup of tea and a biscuit get changed and go home. You get pictures of your insides and they they go over everything they found and any follow up stuff. I'm 24 by the way. It's honestly not worth the risk of not having it done. Everything I said might be different at different hospitals but I assume it's similar. Please don't not do it through fear as honestly afterwards you will be like was that it i can't believe I was so worried.