Urgent colonoscopy and I’m scared

[ATadScared]

I’ve been referred for an urgent colonoscopy and whilst no one has said the words bowel cancer to me I knew it was a possibility. Tonight I’ve just been on my account on the NHS app and seen the words there in black and white “suspected bowel cancer” and I feel alone and scared.

Three friends know about the colonoscopy, all of them going through their own struggles at the moment so I don’t feel like I can talk to them about it as I don’t want to add to their worries. One of them has been quite dismissive anyway so I feel like I definitely can’t bring it up with her, though I wonder whether it’s her way of not letting me worry.

I’m perfectly fine most of the time but it’s just hit me now at nighttime and I’m suddenly scared and feeling very alone. This is the latest in a run of health issues and I just want to hide from it all now but I know I can’t.

I don’t know what I’m doing on here really except maybe to just say hello.

@ATadScared - I’ve had a few 😆 I have been known to doze off in an mri machine despite the noise.
think for a small bowel
one you have to prep a bit (but not as much as for the colonoscopy). X

I find an MRI quite relaxing and nod off too! Call me weird 😂

Glad to hear your colonoscopies have gone ok ! I did also have pain at certain times despite the sedation, but all bearable.

I got the all clear today :). Definitely no bowel cancer! There was a polyp in the caecum but they biopsied it and it's nothing to worry about.

They have found an issue with my liver which now needs investigation, so I can start worrying about that next, but at least I'm all clear on the bowel.

Good luck with your outcomes xx

Great news @dgirluk! hope your liver is ok.
I am wondering when I’ll do a poo again after the big clear out 😆

@JustDanceAddict if mine was anything to go by, about 3 days ! And don't be surprised if you get mucus and some weird stuff for a couple of days. I did, and apparently it was just a reaction to having the biopsy taken. I did wake up at about 3am thinking I’d had an “accident” but fortunately not !!!!!!

Thanks @dgirluk - so good to be able to ask on here as all I got told was not to eat a heavy meal. I wasn’t going to anyway!
ive had a big appetite today though but am eating sensibly.

I didn’t ‘get told anything! I think I even ate some of a McD almost straight afterwards when I got out the hospital. I wasn’t really hungry tbh - I ate less than half of it, and then not much dinner. I was expecting to be ravenous!

They gave me tea and a sandwich after the procedure, then I had chicken noodle soup for dinner!!
plus houmous and breadsticks in the afternoon. I was trying to get dh to wait on me but he had too many online meetings 😆

I’ve been to see a consultant today - booked in for a colonoscopy next week.

literally shitting it, it more ways than one! First time.
been having constant diarrhoea, bleeding, bloody diarrhoea, lost 6kg since January.

am not going to lie, am scared.

Can I ask please- I did a routine bowel screen & it picked up blood so I have to have a colonoscopy. I was told 'within 8 weeks'. Does that mean they *don't think it could be cancerous ?

My first was today so hopefully tomorrow? Such a relief 😁

@dgirluk Great news on the bowels front and I hope the next round of investigations all go well 💐

Hi @MabelMoo23

What I’ve learnt over the last couple of weeks is that it’s completely natural to be scared but that being sent for a colonoscopy isn’t in itself something to be worried about - it’s not to confirm that it is cancer. Previous posters have put it far more eloquently than I ever could 😊 They all made me feel so much stronger when I felt really panicked and alone about it all one night.

I also know now that the colonoscopy, for me, wasn’t a bad experience. The medical staff were amazing and it was more uncomfortable than painful.

I have also learnt that I don’t cope well when people I’ve taken into confidence with something as big as this have then shut down the conversation with “oh it won’t be cancer, don’t worry”. I tend to be quite a positive person but being told how to feel makes me feel trapped, and when I feel trapped I panic.

I guess what I’m trying to say is this is not going to be the easiest of times so surround yourself with the people who are going to be there for you and to support you.

Sorry to bring the tone down a bit, but just to warn folks that it's taken several weeks for my gut to return to what is 'normal' for me (whilst being completely abnormal for most people).
I think the gut must get a bit shocked by the whole thing.

@MabelMoo23 - was really nervous but it wasn’t as bad as I feared.
i was worried about results as my symptoms have been so weird, and then the. Prep and procedure itself. I cried every day for over a week! I barely told anyone what was going on - DH, 3 friends and my line manager but only cos i had to!
The prep is unpleasant but doable - chill the concoction after you make it up and drink it through a straw. I was pooing before I even finished the first round and about 3/4 of the way through the second. Be very near a loo is my tip!! There was about an hour I was on and off the loo and then it tailed off.
I was still pooing in the morning but not with the urgency so was fine on the way.
def get sedation- unf I still felt the camera but I don’t think I had enough or it didn’t take quickly - but it wasn’t too bad. I fell asleep in recovery!
The nurses were great and the consultant gave me the result straight away.
I am still none the wiser as it showed nothing (Tfft for no cancer) so I need more tests on my small bowel now.

Glad to see most of you have had ok experiences and positive results! I had a FIT test on the 2nd September as I was experiencing severe stomach pains (worse than contractions and ruptured cyst) diarrhoea and then bad constipation. The excrutiating pains lasted 7 days and since then have had stomach ache on and off and been constipated. They found blood in my poo so I was referred on the 2 week cancer pathway, its 2 weeks on Monday. I've not even got my appointment yet. My telephone consultation was Monday but has now been cancelled because of the queen's funeral. I'm petrified the dr thinks I've got colitis but wants to rule out anything sinister. I'm sick of been in pain daily and worrying about the what ifs. Its stopped my life atm because I cant plan anything around a colonoscopy date which I dont have. Also have family history of colitis and bowel cancer. I have 2 children 3 and 9 months and I'm 28 so even a diagnosis of colitis will be difficult. I'm so frustrated about my cancelled appointment and haven't got a new one yet. Feel so sorry for people in worse situations than myself. Sorry for the rant.

Potentially it could be that they are breaching the two week wait. As in they are getting too many referrals to do in 2 weeks.

I work in the NHS and am having to have to go private (v fortunate husband has private healthcare) because where I live, two week waits are non existent, dermatology for skin care referrals are at 8 weeks..

in fact my GP said he needed to refer me under the two week wait pathway and it took me 11 days just to get a blood test at my surgery…

Oh I've also nearly lost half a stone and have mucus in my poo too. But have for a very long time and never thought anything of it?

@dgirluk Great news to receive, although I'm sorry it's thrown up yet more investigations. I hope you find some answers soon.

I had an appointment at the colorectal clinic at hospital on Friday, and now have to wait for the date for my colonoscopy. I also have to have a camera down my throat which I'm dreading more, I'm not going to lie. The consultant suggested it would be a 2-3 week wait.

I've lost track of who said what (might have had a celebratory glass or 2 of fizz to celebrate the cancer all clear), but in summary.....

The MDT seem to meet once a week. So e.g. if they miss the first one (which they did for me) it's 2 weeks before they meet to review your case. Then you get an appt to see someone, and that's before they start scheduling tests. So my colonoscopy would've been about 5 weeks after the initial CT scan which showed something iffy, and the "urgent" MDT referral. I today got results from a follow up contrast CT and MRI (which is 6-7 weeks post referral), and the biopsy from the colonoscopy.

Slightly frustrating is I still have the symptoms, but the colorectal surgeon of course isn't interested now because it's nothing for him to cut out, so I'm sort of left with the symptoms and no explanation. My sister has UC (ulcerative colitis) and I have a history of auto immune stuff, but the best guess is that I had some sort of gastric infection (back-up by blood tests and other things indicating infection). Hopefully not early stages of Crohns or UC. Ongoing symptoms are being put down to "IBS" (seems to be the catch all) or food related. But who knows - now it's not cancer I can breathe a sigh of relief at least.

Colonoscopy - my sister has them frequently and the one I had was nowhere near as bad as I thought. Pre-wise I was lucky and got Picolax which doesn't taste too bad. Be very near a toilet, have a step stool in there for being on the toilet, wet wipes, lipsyl as a barrier cream (sudocrem might work), things like sugary lemonade or strained (no lumps) clear chicken noodle soup for that prep day, and suck boiled sweets (not red or purple) to keep your energy and blood sugars up. I wore a dress with no knickers and basically stayed in bed (next to the en suite door) for the day and night, with TV/iPad. During the procedure I had sedation and there were moments of discomfort (a bit like the scrapey bit of a smear test but more prolonged and of course in a different place). Some people feel more pain than others apparently, so that will vary person to person.

Recovery post colonoscopy for me was pretty quick - my tummy was normal for me within a few days - maybe 3 days for a poo and then another 2-3 days for normality. But normal for me is not normal for most people! But manageable.

Not really a summary more of an essay ! But I'm gibberish with relief today ! And fizz !

And while I'm rambling - an amazing DH really really helps. For the support and the practicalities!

I didn't even tell my parents until a week ago. Most of my friends don't know, I've just gone radio silent and shut down to the world. Time to get going again 😱

Liver cysts to deal with now, plus the fibroids and other things which came up during this investigation and might explain some of the other stuff going on !

hooray! I have pooed normally!!

So pleased for you @JustDanceAddict! You’ll start to feel much better now x

I've just come across this thread, and as someone who has had many colonoscopies over the years I'd like to add for anyone about to have one to have something for constipation for afterwards, just in case!
My bowels don't take too kindly to purging and trying to pass a rock hard stool that feels the size and shape of a cricket ball is no picnic 😢
I keep a stash of senna tablets and suppositories, stops me panicking when nothing is moving 😅

Random update from me- had a call from the consultant on Friday which freaked me out when he started "we've had another look at your scans......"

They've got a theory about what happened to me now; they think a bone made its way all the way past the stomach and small intestine and got to the colon. Then made a small perforation in my colon which is why I was so ill. Then made its way out of the colon and has now been calcified by the body, which is why I still have pain there.

I've got the option of a virtual colonoscopy (all t he same prep but then they inflate you with air ands can you rather than put a camera up there) to see what's going on, but then he doesn't really want to treat it. Apparently it's surgery which can be "tricky" - so I'm left with a choice of either pain forever and hope that it settles down one day, or a surgery which could end in a bowel resection :(

@dgirluk my DH had the CT colonoscopy to confirm he had diverticulitis. I think they get a better view of what the actual problem is with a CT scan. I wonder if you have this done could any of the bone calcification be removed or scraped away whilst you are having this procedure.