H‍ey [@Claireg73]‍  how did your colonoscopy go? I hope all well.

Hi it was not great as went though it all

And they could not finish it due to problems getting found round bowel.  Apparently I have many loops on my bowel !!! I'm gutted I just wanted answers .  Need to have another now or something else .  How are you ? Xx

[@Claireg73]‍ hope you’re well, have you thought about being completely sedated while they do it ? From what they say, nothing to worry about right ? 

Im still in square one :( I have was looks like bits of dark red brown mucas with stool. Manage to convince myself I’m dying everytime I go to the loo.  

[@Kadash]‍ I hope everything is well, have not heard from you in a while still hoping everything is well. 

I did a fit test which was positive as expected, freaked out. Now will have to see what the consultant decides to do.

Hi everyone, 

only joined the forum today, after having on and off stomach pains and bloating for over a year, put down to ibs but never a diagnosis, my toilet habits have been all over the place for the last year, but two weeks ago after a night of bad pain I had a very black stool in the morning so went doctors and had to do a sample, 2 weeks later I receive a call from the doctor saying my levels are running away at 1000 and I'm going to be urgently referred to have the camera up my bottom. 
I was in a bit of shock when he mentioned it was a test for cancer and just agreed to go ahead with the referral. Now it has sunk in I'm so upset and confused. 
I had blood tests a month ago due to feeling tired all the time and generally not right, and my blood count was spot on.... if it was cancer would it not have shown up?

has anyone else ever had such a high level?

im 33 and fit for my age I'm looking at my children and want to cry I've not told anyone other then my husband but I've tryed to down play it as he is a worrier. I don't know what to do

Hi Corrin87

A very big welcome to you. Just know you are not alone. I haven’t been on for a bit but the people on  this site really helped me so much. Just having other ppl going through the same stuff as you and someone to sound off to, even just typing your feelings out in a post, it all helps so much. 

I had a fit test test after almost 3 years of dihorhea (I still can’t spell that word right lol) the start of which coincided with major stress at work. 3 or 4 visits to the GP who told me it was IBS (complete load of tosh!) and on the 5th visit and a fit test later like yourself I had a high level.

Also like yourself I had every test possible and everyone came back with nothing much concerning. Even the CT scan came back ok. 

Just like everyone here you will worry, but I’m not sure that playing it down with hubby will do your health any good and at times like this you need to put ‘you’ and ‘your’ health first...the rest, hubby ironing etc will sort itself hun. I told my male friend and my girlfriend and then I told my family because the referral was made and it helped so much. I cried, I worried, I didn’t eat...I couldn’t eat tbh because of the pain, but without being able to let someone else share the worry I’d have gone stir crazy.

i didn’t get dark stools btw, but I know some ladies I chatted to on here did...but it can be so many things that cause it.xx

/sabr/claireg73/kitkit22

Hi to all you guys

How are you all. I have been wondering how you all are but just haven’t had the energy to come online.

Claire...what’s happening now they’ve found they can only get so far around. Are you having some more tests?

Sabr....i see you had a positive fit test result..have you had the endoscopy yet?

Kitkit...how are you Hun. I see you haven’t been on line either.

well guys, just to update you all because I hope my experience can help someone and to say

THANK YOU GUYS because to have you here to chat to has been absolutely a godsend.xx

sorry it’s  a bit long. Anyway, i had the investigative endoscopy as you all know from my postings, after having a positive fit test and a CT scan that had showed nothing. My GP and the consultant didn’t feel I needed one after the scan but I was insistant and they booked me one but they still told me they believed it would show nothing. 

Anyway, the endoscopy did show something. It showed a very large polyp 50mm made up of cells that can turn cancerous. The options I had were to have part of the colon cut away to remove the growth and rejoin (possibility of a colostomy bag) or endoscopic removal.

I opted for the endoscopic removal and the consultant thought this was the best option too.

Trouble was they didn’t have a specialist surgeon who could remove a polyp/growth the size of mine. Anyway after quite a worrying wait (due to covid and finding a surgeon) I went in for surgery. I was told that they would try to remove the polyp from my colon wall. (grrrr it had to be situated the furthest away from my butt didn’t it ️ ️ this meant the tube had to go all the way around my colon to get to it as it was the furthest away it could be) They would go up and down my butt many times to cut it into small pieces which would be brought down from me and would be sent to the lab to test for cancer.

I had been extremely worried about this process. It kept me awake at night dreaming that some pieces might get left in me and not tested for cancer but I was assured all the pieces would be brought down and tested and none would be left in me.

Surgery was about 2 hours or more I believe because it turned out the polyp wasn’t 50mm. (small polyps are <5mm and large are 20-30mm) 

It turned out it was 100mm.

Unfortunately although all of the polyp was removed from the colon wall, bits were left inside of me to make their own way down which was my worst ever fear. This was because the surgery had gone on longer than anticipated and they couldn’t give me anymore anaesthetic. There was quite a bit of polyp pieces that came down for about 3 days afterwards in my poop.The pieces they did get were benign, thank god, but I do worry about the bits that weren’t biopsied that came down naturally. 

Some medics told me that polyps don’t cause pain, but believe me, they do or maybe they themselves might not, but there physical presence does...like pressure on your other bits and pieces and bloating pain. I had been in pain for around 3 years. I had been in agony for 6 months prior to the fit test.

I was told it was IBS caused by anxiety through work and although I do think that the stress was initially present due to ‘bullying’ at work which undoubtedly played a massive part in the deterioration of my health, I always knew that to be in almost constant pain for so long was not normal and not soley down to the persistent petty childish bullying I was experiencing at work. To be in agony for 6 months was most definitely a red light sign and although I am totally grateful to the surgeon, my consultants and their team and the one particular doctor that helped throughout ...I do believe the doctor I initially visited should have done more tests from the onset.

I have a telephone consultation with my consultant soon (?) as I haven’t seen any consultant face to face since my first investigative endoscopy and also briefly with the new surgeon before surgery. It’s been hard not having that face to face contact.

I’d like now to discuss my worries re the bits of polyp that weren’t tested. I was told by a nurse friend that a MMR scan can be used to see if there’s anything untoward that may be there from the bits that were unable to be biopsied. I have requested this. 

This has been a four month journey. I was absolutely petrified of the surgery and it blo*dy well hurt like mad despite being sedated but it’s like childbirth, you are glad you had the surgery and afterwards the pain fades somewhat. 

I have to shout out for some of those lovely ppl in the team were in the higher risk categories and were truly amazing to go into work knowing they were at risk, and be part of the team who performed surgery on me were truley wonderful and I am so grateful to them all.

If anyone knows about biopsies and MMR scans in relation to the bits of polyp that come down naturally, I’d be grateful for any info.

I still have some other problems, like the green tongue and have also been referred urgently re my eyes which are bloodshot with broken veins, pressure problem with them and 

I’m still totally washed out, lost weight, have no energy after a couple of hours....but I’m so grateful to have had it removed. Xx

Hey [@Kadash]‍ I’m so glad to hear that your polyp was benign. I hope from here on you symptoms go away and you heal completely. 

Im a right old mess right now. I have known my stool test had high levels of blood for 3 weeks but still waiting for the surgeon to say what the next step should be. I’m pregnant and I’m worried out of my brains. I don’t know how to cope honestly.

...oh hun...so lovely to hear from you but you really must chase this up. You are dealing with a pregnancy which can be physically tiring, then you have the worries of covid, and this too. You must be at your wits end. Get back on to your GP Hun and ask him to ring the consultant and chase this up. I found that it took about 2 weeks for them to discuss my case, I think it was because they only held a meeting once a week to discuss cases. Then it took another week or two before I heard...but I did have my friend who chased things up. Let me know if you’ve heard and take care.xx

Hi Corrin87 

Thanks for posting - Hope things are okay with you and you've received reassuring news 

I'm going through something very similar and so worried 

Did you get a colorectal pathway letter in the post? I've had one and it's making me panic so much! 

Hem