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?

[Petalplucker]

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.

Ask for a fecal calprotectin test. It will show if there's any inflammation in the bowel (mine always shows as high even when the colonoscopy is clear!). If it's normal then you more than likely won't need a colonoscopy.

And yeah, I'd rather have a camera up my bum than go to the dentist!

Just returned to this thread and saw your comment Bunbury, thank you!

"And yeah, I'd rather have a camera up my bum than go to the dentist!"

Dear Petal, I am coming to this thread a little late but thought I would share my endoscopy experience with you in the hope it will reassure you.

I had an endoscopy done this morning.

Like you, I was absolutely terrified, to the point where I was shaking and sweating, would break out in a cold sweat and "tummy-swoop" every time I thought about it. I have an awful gag reflex and a fear of being sick, and I am not a fan of hospitals. Great combination!

I can honestly tell you that it was fine, so tolerable and nothing at all like my worst fears.

I went in early, met with the nurse who talked me through everything. He could tell I was scared and reassured me, answering all my questions including the silly ones ("will I end up with sick in my ear?" For the record, no) and was so patient and calming. He said that most people are scared of the procedure and it is the nurses job to reassure and comfort them.

I asked for the throat spray and the sedation, and was told I could have both; a cannula was put into the back of my hand and I was given a gown to wear over my own clothes (I opted for elastic waist loose trousers and a vest top), then I was taken through to the room by the consultant who was a lovely chap and reassured me it would be over in three to four minutes. I lay down on the bed, and an oxygen nasal mask (with two little bits that just go into your nose) was put in, this feels a bit cold as the oxygen goes in but it is fine.

Then they go through the procedure again and explain exactly what will be happening, the nurse who sat at my head throughout was very kind and said I could hold her free hand. Then you have the throat spray which feels cold and a bit like chloraseptic spray but it tastes of bananas. It made me cough a little, then you sort of gargle and swallow it and immediately my throat felt numb, but I could still swallow and breathe with no problem. They lie you down and put a little mouth guard in, which has foam covering so it's not hard against your lips, it's very comfortable. Your pulse is monitored, along with your blood pressure throughout.

The consultant then put the sedation into the cannula and I immediately felt a bit pissed and vacant. They then put the tube in but because of the numbing spray I didn't feel it at all in my mouth, by the time I started feeling it, it was halfway down at least.

I won't lie to you and say it felt great, your body's reaction is to gag and retch, but I can only remember doing this three or four times, the noises are quite something but with the sedation it feels like it's not you making them! I focused on my breathing, held my nurse's hand and listened to her reassuring me, and just let my body react the way it wanted to. I never felt like I was choking, or couldn't breathe, there was no feeling of panic, more a sense that okay so this is what is happening and I just need to focus on my breathing and not worry about anything else. The nurse has a suction catheter which she will use for any secretions, with me I think she only had to use it once or twice.

It honestly is such a short procedure and if you have the sedation it feels like a lot less. Before I knew it the tube was out and they were all saying how well I had done. I remember being surprised and saying "was that it? Am I done?" I still felt pissed but also chuffed with myself that it was finished.

They wheeled me on the trolley back to the room and I dozed for a bit, then brought me some tea and biscuits. I was absolutely starving! Then they came and gave me the results and called my husband who came to pick me up and off I went. I went in at 8am and was out by 10am.

Back home I felt a bit dozey and headachey as the sedation wore off, and as the throat numbing spray wore off I realised I had a sore throat but copious amounts of ice lollies really help with this (I have had a whole boxful of rocket lollies today ). I dozed most of the day, on and off. Tonight, I feel absolutely fine.

I really hope this helps you, for me it was knowing exactly what was going to happen and having such reassurance from the nurses. I also feel quite proud of myself given how scared I was but I can genuinely say that if I was told I needed another one, I would not be scared to have it done again. The fear was a 10/10 but the experience was at most a 2/10.

Wishing you all the best x

Gosh BlueCampbell I am really touched that you took the time and trouble to write all of that down. Thank you so much. You should be really proud of yourself for going through that so well! And it is reassuring to know that it can be done.

I know it sounds ridiculous but I have a horrid fear that I will want to rip the tube out of my throat the way I panicked and ripped the black sticky mould out of my mouth they use at the dentist to take an impression of your teeth. I panicked and felt like I was choking and couldn't help myself although I am not usually impulsive or prone to violent gestures! I am very reassured therefore when you say at no time did you feel like you were choking, panicking or couldn't breathe as that is my main fear.

Thank you again.

I had bowel cancer 2 years ago.
I didn’t have any signs or symptoms so it was a complete shock.
I moved house and also doctors. The did a mini health check and found I was anaemic. I had a good diet so they suspected I was bleeding somewhere.
I did a fit test and this confirmed it.
I was sent for both a colonoscopy and endoscopy.
The endoscopy was no problem, I had some sedation and they discovered I had Barratts Oesophagus. The colonoscopy was a failure as they saw I had severe diverticular disease and they had to abort it.
I was booked in for a CT colonography which was much more user friendly!
Unfortunately this showed I had cancer.

I’ve since had a colonoscopy done by my surgeon with maximum sedation.
I also have regular blood tests and ct scans.
Feel free to contact me if you’d like any more advice.
I’m always happy I help as I know how you feel x

So sorry to hear that Borntobeamum but thank you so much for the offer; I may indeed be in touch once I know more. Really appreciate your help and hope your treatment has progressed/is progressing well.

Hi @Petalplucker… You need this procedure as they need the biopsies from many parts of your colon and basically as far as it will reach. This is because your symptoms are indicative of many bowel diseases. They will be able to actually see any ulcerated areas or polyps for themselves (and probably remove those at the same time if they find any) and diagnose specific illnesses either by sight or via biopsies of affected areas. Same with any tumours, etc. I have them twice yearly due to being “blessed” with two autoimmune diseases and a long family history of bowel cancer (crawled out of the shallow end of the bloody gene pool). I barely bat an eyelid now.

Hi @Petalplucker

I have similar symptoms etc as you as well has horrendous anaemia and I'm under the care of a gastroenterologist.

I have medical trauma related PTSD and to be honest, up until I had a specific conversation with the gastro I would 100% have skipped it and taken my chances. In my head, the risk of possible death was tiny in comparison to the impact it would have on my mental health, which I'm aware sounds absurd but that's what things like fear and PTSD do to your brain.

I explained this to the gastroenterologist and he was brilliant, he has said that I will be first on the list so no waiting, that crucially I can have both endoscopies under general anaesthetic, I can wear all my own clothes (hospital gowns are part of the trauma) to be anaesthetised in and they will just move clothes to access the bits they need and then redress me and that all these measures will be put in my plan and the other staff made aware, so there are no slips in communication.

Please try talking to your consultant and explaining the issues you're dealing with. My gastro said if they know about problems, they can address them, which is much simpler than thinking the patient isn't phased and then them really struggling and freaking out before/during/after the procedure.

A note in general for other posters, in situations like this, it doesn't really make any difference hearing other people's positive (or negative) experiences, it's only helpful on a surface level. The fear or mental health issue doesn't listen to reason or logic, that's why the person is in this state in the first place.

Apologies DaisyJGrey I thought I had already replied to your very helpful post but it obviously did not post.

You absolutely hit the nail on the head when you say "The fear or mental health issue doesn't listen to reason or logic, that's why the person is in this state in the first place". I am usually quite a rational person but when it comes to even the thought of tubes down the throat, all logic leaves my head and I am left with the instinct to flight or fight! As ridiculous and over dramatic that may sounds! But thank you for understanding! It is great that you have such an understanding consultant too.

Justilou1, I am sorry to hear that you have to contend with two autoimmune conditons which must be very testing. Thank you very much for your advice which is duly noted.

Just for info to everyone who has posted on this thread, and apologies because it probably is too much info, I am going to the doctor on Monday with my stool sample, oh joy, so that is at least a first step. And I will be armed with all the advice many posters here have shared so generously.

So thank you again for all of the reassurance and very helpful and informative replies!

I had a colonoscopy under propofol - I think because I'd previously not tolerated a flexible sigmoidoscopy well. I didn't know a thing until the very end when I felt a little discomfort so asked to be put back under. It was like being under a GA except no weird reactions afterwards (I often cry/babble/shiver uncontrollably after a GA).