Been called for a colonoscopy after Bowel Cancer Test kit

[Moonstone1234]

Hi All,

I recently did a postal Bowel Cancer Test and have had a letter saying that I need to have a colonoscopy but before that is booked in I need a telephone consultation to discuss the procedure.

I recognise that they have a process but I would rather jump straight to having the test itself. I called the Screening Helpline and asked them what the wait times are for a colonoscopy but they said they couldnt tell me but it would be discussed during my telephone appt.

So bearing in mind Covid etc I suspect the wait time will be significant. I can travel and have someone who will be with me so am planning to say I can travel within say a 100 mile radius if required.

I then investigated the private option but the cost is over £3k which isnt the end of the world but its a cost I would rather avoid if I can.

Does anyone have any advice or guidance please.

OP - many private hospitals are having to take on NHS patients at the moment, so you might not get seen faster if you did pay the £3k.

Best of luck.

"It doesnt surprise me that people turn up having done no prep and expect the procedure to go ahead. Are people really turned away? I will follow the instructions to the letter and I have of course picked up that peeing clear liquid is a good sign. I wont forget that tip.... Our house is big enough that I can 'reserve' my own bathroom too and I work at home. So does DH so it makes all of this easier"

Yes, they cannot do the 'scope if the bowel isn't completely empty and enema on the day won't do a good enough job. It's a different case for Flexible Sigmoidoscopies, but not Colonoscopies. Some people have a few days of the full bowel prep and still need enema when they arrive.

I can't believe it's 3k for a procedure that takes less than 30 minutes, but completely get why would would pay it.

I guess it’s pay for not just the equipment required but the people in the room.

Are you saying that if the bowel isn’t completely clear then you have to have an enema? I was once asked to show how I used my inhaler by a pharmacist as apparently some people spray the cat or whatever they think is causing breathing difficulties!

As I mentioned before the hospital said they would give me an appointment within 2 weeks from date of my telephone consultation.

Yeh, exactly. The bowel has to be completely empty. If you take the prep and follow the diet beforehand you should be fine

Hi @Moonstone1234 as PP says follow the diet and take the prep and you should be clear.
They should also tell you not to mix the prep with ribena or blackcurrant squash but weak orange squash is okay.

People not preparing correctly just makes waiting lists longer as the procedure can't be carried out. Good that you'll have your own toilet and if it helps to know you'll probably be cleared out a few hours before you need to leave the house. Be prepared to be tired if you're up late on the loo.

Regarding private I wouldn't bother if the wait is only 2 weeks.

Pre lockdown my DH had a colonoscopy where they did find cancer, he is currently doing well.
I obviously hope it's not the case for you, especially as you have enough going on with your DH, but just letting you know in his experience he was told on the same day.

If I remember correctly, a few days before you need to start modifying your diet. No nuts and seeds, no red meat, no fresh ground pepper etc. Then no red/purple foods, so can have jelly during the fast but has to be orange/lemon/lime.

They will give you a leaflet but it's important to understand that it's not just 24 hours before. As DH had a morning appointment, he had to start a complete fast from 10pm 2 nights before. Plus the other things you need to stop eating a few days before.

It more complicated by the fact that you are all in isolation after your covid test, so you can't just nip out to get things. You need to be organised with things you can eat in the house before you go for the covid test.

Wax. Yes, I am super organised so will get all the relevant items in. I wonder how many of these tests are not actually undertaken because people haven’t done self isolation or couldn’t possibly starve themselves?

It then means that appointment is wasted because the medical team are all ready to go and then at the last minute find a bowel still full of food (sorry, I couldn’t think of a better way of saying it).

Do you have a CV19 test on the day as well? I have had my first vaccine a few weeks ago if that helps.

I remember jelly from the old days. Will get some in. Can you eat jelly during your fast - light colours only of course

I don't think DH had to do another test. Yes, jelly during the fast at least it gives something "solid", some lemonade ice lollies were appreciated too along with tins of consommé and he made some packet chicken noodle but sieved out the noodles. Probably much the same as a chicken stock cube in water right enough :)

Hope it goes well.

I have had my first vaccination but still have to have a COVID test three days before the procedure then DH and I have to self isolate. I have been told I can have jelly until the day before, but not red or blackcurrent flavour!

Hi All, so I had my review today and they have booked me in for next Wednesday which is perfect. I collected all the prep today direct from the hospital. Not looking forward to the prep but hey ho. I have my cv19 test booked for Sunday and then need to self isolate. I have the first appointment of the day too.

Is jelly really ok to take whilst fasting? That could keep me going...(so to speak.....).

My notes say I need to fast from breakfast the day before.

DH had a colonoscopy and endoscopy a few years ago and jelly was definitely fine then. He was also able to have clear chicken soup I think

Glad you got an appointment soon.

Regarding the jelly check if it needs to be light coloured, like lemon or something, I know you can't drink red squash.

Did they give you a diet sheet for the few days before the procedure? Eating a low residue diet then will help ensure your prep works really well. I've copied and pasted an example but DH was told to do it for 3 days before his fast day.

Follow these general guidelines for five days before your colonoscopy:
Avoid nuts, seeds, dried fruits, dried beans and peas.
Avoid whole grains and cereals.
Choose cooked or canned fruits and vegetables over fresh ones.
Choose white bread, white rice and products made with refined flour.
Drink juices without pulp.

@Moonstone1234 I speak from experience that you will not be able to wfh from the moment you take the prep so take the day before the procedure off work. Even if you don’t start taking the solutions until the afternoon I’d still take the full day off.
The prep is the worst part. Stay very close to the toilet because when that first urge hits you there’s no time to waste.

Hi,

Experienced with colonoscopy here as I have ulcerative colitis.

Honestly, the prep is the worst part. Each time I have been finished drinking the prep solution by bedtime. It may take an hour or so to start working, but then it is dramatic and you cannot go far from the toilet. Put some sort of barrier cream like Vaseline on your bottom before it all starts to avoid the area becoming raw and sore.

Yes, the goal is basically to have clear liquid coming out. It might be a bit yellow from bile. That's ok.

You will feel good when it is over, and I am always very hungry. I have been given juice and biscuits when I am awake enough.

Try not to worry. I know that's hard. It will be over before you know it.

I have had biopsies taken and some polyps removed. Better gone for sure.

Good luck!

I forgot. If you really dislike the prep fluid (i do), you can mix it with flavoured water, just not red, orange or purple. I also find using a straw helps me get it down as it kind of bypasses your taste buds.

I try to down the glass quickly, kind of like ripping off a plaster rather than prolonging the pain,

Also mix the prep and have it cold in the fridge.

Thank you. So I can mix it and then put in the fridge. Will definitely use a straw and put a splash of clear squash in as well.

The trick to not feeling like you’re starving is to drink something with sugar, so although it is “clear fluid” it keeps up your energy. So, something like full sugar orange squash or cordial, diluted of course. Not blackcurrent. It’s fibre that you speed to avoid.

*need to avoid!

All, thank you very much for your advice. I knew you would be able to give some tips and feedback. I won’t bore you anymore but will come back late next week and update.

Feeling rather scared but trying to do other things to distract. Still, I have saved myself £3k. Maybe I should concentrate on that...

H I all, I think I mentioned that I would come back and update. I had the first appointment of the day today which I would recommend as it makes parking easier although my husband just dropped me off.

The Citramag and senna - I thought it wasn’t going to work but it did. Went about 10-12 times overnight and eventually it was just water. Did have a proper shower and washed my hair. It made me feel SO much better.

As I was first there was little delay. Lots of different nurses but the last one was especially nice. What I did notice when my ward was being prepped is how little some people prepared for this. I know you need to concentrate but someone had lost their consent form, someone else couldn’t remember what medications they took. One said that they didn’t want sedation but verbally said they did. The lady next to me said she hadn’t actually fasted but took the medicine anyway and was now feeling sick.

I don’t really remember the procedure. Highly recommend the sedation though. I honestly didn’t feel a thing. Afterwards I had a headache and they told me they have removed one 15mm polyp and NO cancer. Just resting at home now. Will catch up on my sleep tonight.

I had no symptoms but you cannot second guess these things. Thank you all for your help and support.

Congrats! It is such a nice feeling to have it over with and know you are clear. Hurray the polyp is gone.

Hi Moonstone
Thank you so much for the update and I am very pleased to hear your result. I have the first appointment of the day next Tuesday so it has been really helpful to hear how you got on.I shall definitely request sedation too and hope all goes well for me!

Smiley, fingers crossed. I am 100% back to normal now. A good nights sleep really is the best medicine isnt it?

I do recommend whilst the laxative is doing its 'job' that you use very soft wet wipes and have sudocreme to hand for your sore bottom. That really helps. Pleas drink tons of water after the laxative. It helps wash it through - drink much more than you think you need. My Part 1 of the laxative started working after about 2.5 hours and you do think that maybe you dont need the second part but do take it. My dread was that I missed out a bit and then after they gave me the sedation they couldnt then proceed with the op because my bowel wasnt clear enough! Apparently that happens quite a bit and I REALLY didnt want this. Having to do the whole thing all over again in say a weeks time was a horrible thought.

The overnight is not pleasant. I woke up feeling rather jet lagged on the day of the procedure but I am literally 24 hours later back to normal.