High FIT result and anaemia in young adult awaiting urgent referral

[GlassHalfEmpty70]

Hi,
I'm just looking through various posts as my 28 year old daughter has just had her FIT test results in the 400s and is now on the urgent pathway.

She also has anemia, bloating and low right stomach pain.

She's always had toilet issues, ever since she was young - extreme constipation, pain etc

I am so scared for her, but trying to be positive in her presence.

Is there anything it could be instead of what I'm thinking?

I had similar last year (also a history of toilet issues!), now have a diagnosis of IBD. I was terrified when they put me on a two week referral for a colonoscopy, but they tell you on the day if there’s any signs of cancer (negative for me). Hopefully you will have some answers soon

Inflammatory bowel disease. Was she never investigated for that before if she's had longstanding bowel issues?

Thank you. I was wondering this too but she had a normal calprotectin level which I think rules that out? Xx

Thank you.

I'm so pleased for you 🥰
Unfortunately her calprotectin was normal which I think rules IBD out 😕

Some parts of the bowel inflammation in IBD don't show in calpro.

It could be her IBS + a pile or tear or similar, especially if she has suffered with constipation.

A tiny % of high FIT tests turn out to be because of cancer, it's not a diagnostic test. They are followed up urgently as a cautious approach but it's always worrying.

All the best.

@GlassHalfEmpty70there's a few IBD types that might not flag up with high calprotectin (although mine did!). I feel like there’s some types like small bowel that don’t always show high calprotectin levels (mentioned in IBD support groups I’m in). Maybe SIBO? Or a false negative? Sending lots of positivity your way!

Normal calprotectin doesn't rule out IBD at all. The numbers are only part of the picture. I suspect your DD will get an IBD diagnosis from the sound of it, but it's good it's being investigated.

Conversely my Calprotectin is always raised in the region of 1000 and they can’t find anything 🤷‍♀️ FIT is always normal though. Does a low cal reading mean it can’t be IBD?

No it doesn't. I have confirmed IBD and my calprotectin is almost 0.

As others have said, no, that's not correct. Has she ever had a camera test before?

There's lots of more likely things it will be other than cancer.

I know exactly how you feel as this was me a few weeks ago. I posted about this a while ago with my ds 19. His fit test was very high and another test he had was also high. Blood in toilet, anemia and eating was off. We thought IBS/iBD so was out on urgent cancer pathway and I honestly thought it would be bad news with everything I read. He had a colonoscopy and everything was nornal. No inflammation no cancer completely normal. The GP has now told him it could be due to him being constipated at times so when he does go it can cause bleeding. We were told if bleeding gets worse then go back but otherwise all was ok. Good luck op.

Statistically 9 out of test positive FITs are not caused by cancer.

With a history such as your daughters I think ti far more likely it is due to another cause such as IBS...

Thank you everyone for your replies. I'm feeling less panicky about it now. I've obviously not shared how I'm feeling with my DD...

Apologies that I'm incorrect about calprotectin test results - the downfall of a quick Internet search 😞

@decorationday yes, she's had a sigmoidoscopy several years ago but it wasn't conclusive as the prep had not fully taken effect for her.

@Chewbecca Would a tear or piles cause a lot of blood? Not just on the tissue but in the toilet too?

Is the fact that she is aneamic worrying? When she saw the GP about her FIT results, she said luckily you're not showing other markers like aneamia, but then had blood tests which showed she is...

Anaemia would be consistent with inflammatory bowel disease.

I don't understand why the failed sigmoidoscopy wasn't repeated? Even if she didn't complete the prep correctly they could have done an enema to allow them to proceed with sigmoidoscopy. She shouldn't have just been left to continue getting worse.

She needs a full colonoscopy for right sided pain anyway now, I just don't understand why she hasn't been cared for properly long ago. It is very very important that she takes the prep fully and properly so they can find answers. Chilling it in the fridge can make it easier to drink.

I'm not sure why it wasn't but I know it was around lockdown times. Hopefully, they saw enough to warrant no further action?
I had a colonoscopy myself just over a year ago so am trying to give her as many tips as possible for getting the prep down!
Thank you for your reply 😊