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Would some kind person please talk to me about possible bowel cancer and possible ways of diagnosing it, or ruling it out, without endoscopy or colonoscopy?

60 replies

Petalplucker · 13/06/2021 12:24

Apologies in advance for TMI.

There are two parts to this post.

  1. It's a Sunday and I happen to be alone, working away from my family (within Covid rules) on a project and so have time to think. Plus this has coincided with seven consecutive days of quite disabling stomach cramps and loose stools and rushing to the loo in the night and early morning. Yesterday, thinking I was nearly better, I ate a proper meal for the first time in seven days and today I am paying for it again.

Prior to this I have had about eighteen months of having had diarrhoea for two or three days about once a fortnight (in between everything has been ok). I had an ultrasound scan which said I had a spastic colon. I have also been very tired recently. I am absolutely terrified I have bowel cancer. I know I need to seek medical help and not advice from strangers but right now I am alone and in a blind panic and desperately need some reassurance about what to do to the best given that ... .

  1. ... when I go to the doctor they will recommend colonoscopy/endoscopy and that is something, along with drowning, that terrifies me most in the world. I already have acute anxiety around hospitals and dentists. I can barely tolerate having my teeth cleaned by a dental hygienist. The thought of someone putting a tube down my throat and not being able to breathe brings on this paralysing fear which is stopping me going to see the gp again. I know I would be breathing under sedation of course but even so the thought of even being minimally aware is terrifying me.

I know I need to do it as I have a husband and teens but right now I can't get past the anxiety symptoms in order to behave in a way that is rational and sensible.

Does anyone know of any other diagnostic treatments available please? Swallowing a camera pill? Having an endoscopy under a general anaesthetic? How would I access these?

Also, if you have had bowel cancer, do my symptoms sound familiar?

Does anyone have any wise words that will stop me playing ostrich?

I'm notmally a reasonably sane, sensible person so I feel incredibly embarrassed that I can't just go ahead and endure an endoscopy and colonoscopy like anyone else.

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MsMoonlight · 13/06/2021 13:25

My Mum is in her 80s and refused to have a colonoscopy without sedation which they wouldn’t do. They referred her for a CT scan which ruled out cancer as a cause. Still no nearer to a diagnosis but her symptoms have eased somewhat.

Lalliebelle · 13/06/2021 13:30

You could also ask for faecal calprotectin to be measured. This will indicate if it's likely to be caused by IBD or IBS. In the UK you would be offered colonoscopy but bowel CT also an option. The first step would be a discussion with a colorectal specialist.

Petalplucker · 13/06/2021 13:44

Glad your mum is feeling better Lalliebelle and thank you for that useful information. It helps to know that I can approach my GP with a bit more information and some different options. Mid fifties, Europe Zone one.

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Petalplucker · 13/06/2021 13:46

Sorry that sentence below about your mum feeling a bit better was meant for MrsMoonlight apologies, posted too soon.

The thanks for info was meant for Lalliebelle!

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UseOfWeapons · 13/06/2021 13:59

Most NHS hospitals offer conscious sedation as an option for gastroscopy and colonoscopy, so you are usually awake, but a it more relaxed and distant from what’s happening. Most places also have Entonox available in addition. Patients almost always say that it’s the bowel preparation done the day before that is the worst bit.

You are right, the gold standard for investigating bowel problems is colonoscopy. CT Colonography, a virtual colonoscopy using CT scanning, is a reasonable second choice. However, we don’t use this for the reasons you stated...if polyps are found and need to be removed, or IBD detected, you still need a colonoscopy to treat, or to diagnose properly.

Your GP is advising you correctly, to thoroughly investigate both of your problems, upper and lower endoscopy are appropriate. There are many bowel problems, but most have similar symptoms, so without a colonoscopy, there isn’t a reliable way to distinguish between colitis, diverticulosis, or bowed cancer. Diagnosed early, the former and the latter are very treatable. If your colonoscopy is clear, they may consider capsule endoscopy. CTC is done in my hospital only if there is a medical reason not to do a colonoscopy, or if the colonoscopy was incomplete, i.e. the terminal ileum was not visualised (the place where the small and large bowel meet). Then it is done for completion, to see the bit of the bowel wall not seen by the scope.

I know how it feels to be terrified of having an investigation, and terrified not to have it. One advantage of endoscopy, is that you get a copy of the reports as soon as it’s over, so you know what the score is. Half of the fear can be worry about what something might be, but I’ve had patients who have been terrified of the actual procedure due to past abuse, and so far, I can only remember a couple who didn’t manage to make it through the procedure.

FIT is good, but if the value is high, you’ll be referred for colonoscopy anyway. And in the meantime, more time is lost. Whether it’s IBD causing your bowel problems or something else, or nothing, getting it sorted is key.

If you feel you might be able to do it, perhaps see your GP for some diazepam to take before you go for your procedure, but let staff know you’ve taken it, as it may affect the amount of sedation they can safely offer you.

I find smears absolutely abhorrent, and take it one smear at a time, so far , so good. Also terrified of dentists! Most people are frightened coming in for any procedure, but I think you’ll find that the staff will do everything they can to help you relax.

Hope you’re okay, OP, I’m keeping my fingers crossed for you, whatever you decide.

Petalplucker · 13/06/2021 14:51

UseOfWeapons thank you so much for taking the time and trouble to post that. I cannot tell you how grateful I am.

"I know how it feels to be terrified of having an investigation, and terrified not to have it.
^ This sums up my situation perfectly!

And thank you for the detailed factual information which I will discuss with my gp Flowers

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UseOfWeapons · 13/06/2021 16:29

You’re more than welcome 💐
If there is any way I can help, I’m happy to give you whatever information you need to help you make the decision that’s right for you, about either of the procedures, or other tests, so please don’t hesitate to post again or message me if I can help.

Petalplucker · 13/06/2021 19:20

That's really kind UseOfWeapons and very much appreciated.

I will make an appointment with my gp tomorrow and get the ball rolling. I know it's madness not to do so.

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Petalplucker · 13/06/2021 19:22

And thank you very much to everyone who posted. I feel less panicky about it this evening.

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helpmechoosewheretolive · 13/06/2021 19:26

I get it OP; I've had to have a MRI recently (suspected neuro condition as well as Colitis Confused) and I was terrified. Actually I'd say that was worse than the colonoscopy as although it's not painful at all, dark thoughts can take over when you're in the scanner!

LesRosiers · 13/06/2021 19:29

What a lovely post from @UseOfWeapons So much useful information.

Not sure exactly where you are OP, but I've had an endoscopy and colonoscopy in mainland Europe and was given a GA, which is standard for the country I'm in. Is there a chance you could have the procedure wherever you are and it might be done that way? Flowers

Jocasta2018 · 13/06/2021 19:30

You can have a CT colonoscopy.
They inject you with dye then do a CT scan of your abdomen.
You have to do the same prep as for a standard colonoscopy - mega doses of prescribed laxatives - but nothing goes up your bum!

Obviously if something shows up & they need a biopsy then a colonoscopy will probably happen but that is manageable with sedation.

Petalplucker · 13/06/2021 19:31

Thank you helpmechoosewheretolive. I hope you are ok. I would be the same. I think it's about lack of control in a very alien environment. Flowers

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Petalplucker · 13/06/2021 19:33

May I pm you please LesRosiers?

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Petalplucker · 13/06/2021 19:34

Thank you, I didn't know that Jocasta it is good to know there are some alternative routes available.

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LesRosiers · 13/06/2021 19:44

Yes of course. I'm in France if that answers your question anyway?

Petalplucker · 13/06/2021 19:48

@LesRosiers

Yes of course. I'm in France if that answers your question anyway?
Les Riders Thanks! And yes it does but I'll pm you about specifics if that's ok.
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Petalplucker · 13/06/2021 19:49

So sorry Les Rosiers my autocorrect is hard at work today.

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bunburyscucumbersandwich · 13/06/2021 19:55

The worst part of a colonoscopy is the laxatives that you have to take beforehand! And yes, having teeth cleaned is far worse!

I'm a massive wuss, but it's really not that bad. Sedation is the way to go. I have to have them yearly as I have IBD.

Is your only symptom diarrhoea? Is there any mucus or bleeding? Has your doctor tested your poo at all?

Petalplucker · 13/06/2021 20:03

@bunburyscucumbersandwich

The worst part of a colonoscopy is the laxatives that you have to take beforehand! And yes, having teeth cleaned is far worse!

I'm a massive wuss, but it's really not that bad. Sedation is the way to go. I have to have them yearly as I have IBD.

Is your only symptom diarrhoea? Is there any mucus or bleeding? Has your doctor tested your poo at all?

Oh Bunbury that must not be much fun having to have them done annually. (That makes me feel bad for complaining about having to do it once!)

No mucus or bleeding. And I suppose poo testing will be the next step. My doctor just keeps insisting I have a "colon spastique" and I haven't challenged it too much because she told me what the next steps would be if I did ...eg endo/colonoscopy etc.

I have to do something though because I can't live a normal life with these symptoms and it's really getting me down.

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Petalplucker · 13/06/2021 20:05

Btw thank you for the reassurance Bunbury , in a way it's good to know you find teeth cleaning worse! Smile

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LavendarMoon · 13/06/2021 20:16

I have a friend recently diagnosed with a tumour in her bowel via CT scan in the first instance. She did have a colonoscopy afterwards, before surgery, but diagnosis was via the scan.

I completely get your fear. I have similar fears. I had a colonoscopy once and was terrified but did manage to get through it.

CharlotteRose90 · 13/06/2021 21:50

Please get the tests done. I lost my grandad to Bowel cancer and was tested for it myself when I developed symptoms. I have ulcerative colitis. They can give you full sedation or GA for endoscopy and colonoscopy. I’ve had both in the nhs as I have one or two a year to manage my condition. Colonoscopies I can tolerate but endoscopy not a chance am I being awake for it the last one scratched all my throat. Please don’t leave it. Your health is super important.

TwoLeftElbows · 14/06/2021 00:05

I am also terrified of the dentist and even having my teeth cleaned. For what it's worth, I found the endoscopy much easier than either. The worst bit was the fear of the unknown really - they say "it's not painful but may be uncomfortable", but what does that really mean? I had both sedation and throat spray, I had it all explained to me, I apologised to everyone about the state I was in, and it was fine. Even the mouth guard was much less intrusive than I expected, and the needle in the back of my hand for the sedation was tiny. Everything about it was less awful than I'd anticipated. I have no memory of "having things done to me" or any trouble breathing. I do remember walking out feeling completely untraumatized.

One thing that's harder in the UK at the moment is you can't have anyone accompany you. How different that is to normal, I've no idea, but that might be another difference between countries to consider.

Petalplucker · 14/06/2021 07:01

Thank you again so much for all of these replies. They've really helped me to (a) feel less of a wussy idiot and (b) to approach this issue with more confidence and info that I can take with me to the gp.

I also feel generally calmer about it this morning, knowing that others who feel the same have been through it and survived, so thanks for helping me get over my irrational "panicky hump" as it were!

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