I'm convinced it's bowel cancer and I... - Crohn's and Colit...

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I'm convinced it's bowel cancer and I'm going to die.

Sammy2021 profile image

I posted here recently about my very high calprotectin level. I'm absolutely terrified and I cannot function. I am convinced that I have bowel cancer and I can't cope. Brief history below:

Jan 2017: Referred to gastro as noticed blood in stool and calprotectin was almost 200. I delayed a colonoscopy because I was stupid and scared.

Aug 2017: Calprotectin repeated and showed as more than 2000. Referred for colonoscopy.

Jan 2018: Finally went for colonoscopy but the Dr decided to stop because I was in a lot of pain, so only looked at 11cm of bowel. Did biopsy and no inflammation found.

Feb 2018: Did a PillCam to look at small bowel, which was normal.

March 2018: Calprotectin down to 200. Then went down again to 58.

May 2019: Upper abdominal tenderness. Calprotectin repeated and is 107.

Sep 2019: Calprotectin 109. Referred back to gastro.

Jan 2020: Gastroenterologist felt stomach and looked at calprotectin results. Decided he thought it was IBD as only slightly elevated.

June 2020: Pelvic ultrasound normal

Aug 2020: Upper abdominal ultrasound normal

Jan 2020: Noticed slight pink blood in toilet and on wiping. Upper abdominal pain still there (cannot lay on left side or it hurts upper right side). Calprotectin repeated and back up to over 2000!

Does this more indicate cancer or IBD? I'm 32, no family history, but I have drank alcohol every day for 10 years :( My diet was also terrible growing up. Convinced I've killed myself (with the help of the doctors who didn't investigate my colon).

I'm so scared. Has anyone had similar calprotectin results/ pain/ blood and not had cancer?

Thanks.

17 Replies

Hi, I can’t say for certain, but from what I understand, such high calprotectin levels(over 2000) isn’t indicative of bowel cancer, but more of IBD.

Thank you. I have read that some places too, but I wasn't sure if it was always the case. Fingers crossed.

Hi. Try not to stress, easier said than done I know. If it’s any reassurance my daughter’s calpro has fluctuated from over 6000 down to 22. She’s had severe right sided pain, diarrhoea, bleeding and a 5 week stay in hospital, all in the last year. She was diagnosed with Crohn’s and given the fluctuations in your scores I would have thought you are more likely to have IBD than cancer. Your bowel needs to calm down, so you really need to pay close attention to your diet and definitely cut out alcohol, acid foods, coffee. Try eating very bland foods for a while, such as steamed chicken, boiled potatoes, white rice, bananas and see if this helps before gradually reintroducing different foods and seeing what effect they have.

It’s a horrible and difficult problem. Maybe you can have a colonoscopy under a general anaesthetic to try to get a proper diagnosis. I wish you all the best. You will get through this.

Sammy2021 profile image
Sammy2021 in reply to RuthRob101

Hi, thank you for replying to me. I'm sorry to hear about your daughter :( I hope she's doing better now. I think you're right about the advice about the diet too. I definitely do notice that I get heartburn and a bad stomach after coffee and acidic things like orange juice (I think I have gastritis too, probably from the alcohol, which I will be quitting if the tests come back clear for you know what). I will suggest they do the colonoscopy under GA - I'd rather not see the screen anyway!

Thanks again :)

RuthRob101 profile image
RuthRob101 in reply to Sammy2021

Hi again. Yes my daughter is doing very well now thanks after many stressful and scary months. It occurs to me that my daughter also had a few scans to help with the diagnosis, an ultrasound and I think it was an MRI, both of which showed up abnormalities. Maybe this is something you could ask about. Also, if you’re having trouble eating, then another suggestion would be some nutrient drinks as you don’t want to lose any more weight and cause other health issues.

Sammy2021 profile image
Sammy2021 in reply to RuthRob101

Glad to hear she's doing well. They wanted to give me an MRI but the doctors at the hospital couldn't agree as to whether I'd definitely be safe in there because I have metal attached to my spine (one said it should be ok. Another said it's fine and one said 'definitely not!') and then said 'but it's up to you'?! - so I wasn't going to risk it!Thank you, that's a good idea! Think I'll need to do that.

Annie31 profile image
Annie31 in reply to RuthRob101

Absolutely! Neither of my daughters have ever allowed them to do this procedure without a general. I'm surprised as 11 cms wasn't exactly a through examination was it?!

Sammy2021 profile image
Sammy2021 in reply to Annie31

No, it wasn't :( They tried to give me a sedative but they couldn't get it in a vein and at one point when they tried, it felt like they hit a nerve in my arm because it felt like a shock all the way down to my hand. So after about 10 minutes of trying and all that pain, we decided that I'd try to have it done with just gas and air. It was so painful. I think they decided that they didn't need to look because my calprotectin fell down to 58 and the biopsy was clear for inflammation - but that's what's making me worry even more about cancer. Very scared.

Annie31 profile image
Annie31 in reply to Sammy2021

I think you should push for another colonoscopy under general and I'm sure this will put your mind at rest. In the meantime try not to worry too much as if this has been going on since 2017, it more likely to be IBD

Sammy2021 profile image
Sammy2021 in reply to Annie31

Thanks Annie :) Will be doing!

Annie31 profile image
Annie31 in reply to Sammy2021

👍!

Have you lost any weight between 2017, when this started, and now? I am not a doctor but would suspect f it was cancer it would be much more advanced than it was in 2017 and symptoms would be worse but again I’m not a doctor. I think a colonoscopy should be done whether with just more sedation or anesthesia as RuthRob101 suggested.

Sammy2021 profile image
Sammy2021 in reply to jackdup

Hi, thanks for replying. I haven't lost weight (except for this week because I haven't been able to eat because I've been worrying so much) but I'm 5 ft 5 and only 8 stone (110lb/ 50kg) so there isn't much to lose! The last GP I saw said that all my bloods are normal and that she'd expect something to show up, or for me to feel much worse by now if I had advanced cancer. I've scared myself though by reading stories of younger people with BC who were told the same thing before they were diagnosed. I keep telling myself how rare it is in someone my age, but then I think about all their stories and get scared all over again. I will be pushing for another colonoscopy if they don't suggest I get one, or I'll go private.

I have only known one person personally who had colon cancer and he lost a significant amount of weight. If you do a search for weight loss cancer is usually in the list even though there can be numerous reasons for weight loss. My only symptom of Crohn’s disease was weight loss when I was first diagnosed. You are slender but am pretty confident if your body had been fighting cancer for the last 3 years you would have more than likely lost weight. I have seen women who weighed 120-125 pounds drop down to 90 pounds due to illness so even though you are slender you could easily lose weight. I think having a colonoscopy would certainly be well advised even if for nothing more than to put your mind at ease. Worrying is very stressful and to much stress is never good for one’s health.

If you Google enough you can find all kinds of rare instances but it is a high probability you will not be in that rare group so trying to convince yourself otherwise is counterproductive. You don’t want to look back on your life when you are 70 and wish you hadn’t wasted all those years worrying. Should it actually be cancer or something else that is serious you will have plenty of time to worry.

It is human nature to worry, especially about the unknown, but we have to learn to put it into perspective. I don’t want to sound like I am trivializing your worrying as I have done my fair share over the years as well but try to keep it in perspective.

Please let us know how you make out.

Thank you. That's very reassuring to hear. I'm terrible when it comes to worrying in general, and I have suffered with health anxiety my entire life (hence the alcohol use, which is somewhat ironic). This is just one of the few times that a test has actually thrown up something concerning, so it's especially tough. You're right though, worrying is pointless for now. Today has been all about distraction for me - no Googling 'bowel cancer in young people' or 'bowel cancer symptoms'. And I haven't drank alcohol so that I can have some beta-blockers (my doc said I could have them together but that doesn't seem like a good idea to me.. ). Hopefully tomorrow goes ok too.

Thank you again 🙂

So eventually what do you think you have in general , are you still having all these symptoms going into 2021

Hi. Yes, I still have symptoms (I just realised that on my original post the last date I wrote was 'Jan 2020' - I mean 2021! I have booked a private appointment with a gastroenterologist next week and they will no doubt request a colonoscopy due to my high calprotectin level.

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