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.

Only if you had sedation. If you just have gas and air you'll be fine to drive

I had a routine colonoscopy where they found a few polyps. They all looked OK but after biopsies one turned out to be cancer. It was caught early and after some treatment I am touch wood clear. I'm having 3 monthly checks ups.
Theres a great fb group for support and really great positive stories.
There's so much treatment out there.
That's even if you do have it, you might not!
Its all precautionary at the moment. The worst part is now where you are waiting.
Please don't feel alone xx

The thing about a "Suspect cancer" status is that it very much means

"We need to make sure it's not cancer"

rather than

"We reckon you do have cancer."

This test is literally designed to rule things out.

I know it's easier said but when you are referred under the 2 week path way it is to rule out cancer not confirm it. Thinking of you x

My DH has just had one. Referred on two week pathway as urgent. He said prep wasn’t too bad, but couldn’t be far from the loo!!
He didn’t have sedation and said it was uncomfortable rather than painful, just like having stomach cramps. He got results immediately and was clear. Consultant told him that only 4% of colonoscopy patients are positive for cancer in his experience.
Keeping everything crossed for you x

Yep just confirming what people have said really - if you have sedation (via a canula in your arm) then you need someone with you for 24 hours (overnight) and you won't be able to drive.

And yes I wish I'd realised from the start that most people don't have cancer, and even with the urgent referral thing, they're ruling it out not in. If that makes sense !

I spent the last 5-6 weeks thinking holy shit I think I have cancer, but not being able to do anything about it. As opposed to thinking - ok something's going on, it could be loads of things, one of which is a very slim chance of cancer.

For the person with suspected IBD - one of my good friends has Crohns and my sister has Ulcerative Colitis and they live "normal" lives. One is on drugs from the hospital, the other manages it through a (pretty hardcore) diet when its in flare up although it took years to get to that stage.

My DH couldn’t drive home after colonoscopy as he was given sedative. He couldn’t have gas and air, due to having had a triple heart bypass, now we know. I picked him up and as we left car park, he was asleep. What is annoying we had to wait 3 weeks till face to face appointment for results, to tell him he has diverticulitis, which we already knew and to be given antibiotics, which he could have had earlier. He has to see consultant again in 6 weeks to see how his diet and symptoms are getting on.

I’m back to the thread again having had a migraine yesterday. All these sleepless nights catching up on me I think!

I had the FIT results on 24th Aug, pre op assessment on 31st and the colonoscopy is on 12th Sept. It feels both fast and slow at the same time. I’ve read and reread the diet sheets and I know what I need to do. I’m going to have the sedation and an amazing friend is driving me there and back. Another is looking after me and the children that evening.

I just can’t settle to anything until it’s done. The house is in chaos and the children go back to school this week and I just don’t feel prepared. I just feel in limbo.

Dh had exactly this. I think once particular symptoms are flagged up that could be sinister, you get put on the urgent pathway to rule it out/get treatment asap. Once that is set in motion it will always be described as ‘suspected X’ (worst poss scenario). It’s horrible to receive that letter, and came as a shock to dh, even though the gp had said she didn’t think there was a cause for concern, but they needed to rule things out.

@dgirluk you’re really going through it. Thanks for the colonoscopy tips. Much love and strength for the coming weeks xx

@Cantshakeit it sounds like we’re going through it all at a similar time xx

DM me if you’d like to x

@ATadScared, I've been exactly where you are. You said you have lots of gynae issues - so did I, but I ended up being referred to colorectal.
I was also seen under the two week wait protocol and was on the verge of complete panic about it. (I didn't even know I was referred urgently - the consultant said it would likely be weeks before I got my tests, so when I was called for an urgent flexible sigmoidoscopy it was a real shock.)
It became clear in my case that they wanted to exclude a bowel obstruction, in other words a tumour. That helped me calm down a little, but didn't stop me worrying.
I'm out the other end now, if you'll excuse the pun. Although I had to have the procedure twice, I ended up with some nice pictures of a perfectly normal colon. (Just to say that I needed some pain relief on top of the sedation, which really helped.)
I'm sending positive thoughts for a good outcome for you.

Wishing you all the best @atad. Further coloniscopy tips: chill the liquid and drunk with a straw, so you don't taste it, plus toilet wipes for the loo that day. Don't be worried if nothing happens for a bit; I thought it hadn't worked, then it did. The team will talk you through the procedure, and you can see what is happening. The polyps I had came back clear from the lab, and I hope all goes well for you.

Glad all was well @vipersnest1 xx

Thanks for the tips @CrepuscularCritter and glad you were ok too xx

I was on the Two Week Pathway, they found polyps which were removed at the time and sent off for checking. They rang me the next morning to check I was ok, 2 days later the results were telephoned through to me that the Polyps were pre cancerous, so I’ve had 3 more Colonoscopies and polyps were found a couple of months ago, again removed at the time. I have to go again in December for another one. But they have saved me from having Cancer so its all a good thing to have done.
As another poster said it’s to rule out Cancer, not to prove you have it, the Prep is worse than the procedure, stay in the bathroom with a book.
Good luck.

Thanks for the helpful tips, everyone. I just want to get a date and get the ball rolling. The limbo is not good and I feel like I am developing more physical symptoms but I do wonder whether that's all psychosomatic. I really hope so, anyway.

@Cantshakeit it's definitely easy to focus on symptoms at this stage - at least I found that. You're stressed, you're tired, you're scared. I know all the advice is to be positive, that your mental attitude can affect your physicality, but it's so hard. I did trawl the internet for inspiration and found a monk on YouTube called Nick Keomahavong who I've found really helpful - but different things help different people. It's easy to say - try not to dwell and focus - but having been there, that's literally all I did.

I also cut my social circle right down because I couldn't cope with people - I don't know if that's good or bad, but I would definitely say make sure you have people you can talk to. Whether that's one person or 10 people. For me it was my DH, my best friend and my sister, who all had their own perspectives and ways of helping. Getting outside to nature also helped me massively - just going for a walk somewhere - in a park or somewhere.

Best of luck and let us know how you get on xx

@JustDanceAddict How are you doing? Is your date coming up?

@ATadScared it’s tomorrow!! I’ve had my first prep and it was ok - did the necessary but have some cramps now second is at 7pm.
How are you doing? Are you out the other side (yours was today?).

Yes, mine was earlier today. I don’t know how I didn’t see your post last week, sorry about that. I’ve just seen it and I wanted to let you know that the colonoscopy wasn’t that bad at all. I had the sedation and I’m now resting.

Please feel free to DM me if you have any questions x

@ATadScared - glad yours went ok. I’ve also gone for sedation! X

@JustDanceAddict I’m finding a little stool in the bathroom quite useful this evening

All the best for tomorrow xx

@JustDanceAddict hope you’re ok this evening x

Hi @ATadScared - I’m good thanks. Nothing was found but my calprotectin is sky high (2000) so they need to do an mri of small bowel next ti check for chrons.
i was sedated but I’m not sure it I had taken enough as parts of it was really painful and then I dozed off in recovery!

@JustDanceAddict Glad to hear you’re ok. If you’ve not had an MRI before they’re nothing to worry about. I tend to close my eyes before I go in 😊