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Do I keep advocating for myself as I am struggling in expressing the severity of how unwell I am

Io123

Hello,

I would really appreciate any guidance and advice as I am so lost.

I was first referred on urgent suspected cancer pathway for a slightly raised FIT of 27 in October 2022.

I had a colonoscopy and random biopsies (Dec 2022) small bowel MRI (April 2023) and faecal calprotectin (April 2023) were all ‘fine’.

I had a Gastroscopy showing oesophagitis (June 2023).

I then developed a fissure which wouldn’t heal and had Botox surgery in Dec 2023. Apparently it seemed to be looking as if it was healing but was still given Botox. It really feels like it’s got worse or I’ve got another fissure.

Since I’ve become more and more unwell and the symptoms are worse.

I’ve lost a significant amount of weight (GP recorded 16kg), noticing blood in stools, vomitting and barely able to eat. I’m also extremely tired.

My GP repeated a FIT test in March 2024 and it’s now showing a result of >200 (up previously from 27)

I have an appointment with my colorectal consultant at the end of the month and feel like a fraud saying how unwell I feel if all the previous tests have come back fine.

I’ve been told to ask for an earlier appointment but haven’t as I just feel silly when all the results don’t seem worrying.

Does this sometimes happen and should I persist? Could this still be IBD as my GP is concerned I have a possible cancer still but if my colonoscopy was normal how could it be IBD or cancer?

Richard Faust Community Admin
Hi . Your confusion and anxiety are certainly understandable. Given the circumstances it does not seem out of line to ask for the earlier appointment so that you can get some answers. The FIT test results can depend on a number of factors, such as age, but I want to share with you this article which describes some research on FIT test results and the increase in cancer risk as the results and age grouping increase: https://www.stridesforlife.org/fit-value-actually-mean. Of course, as you noted, it is good news that other recent test results have come back fine, but you deserve for your symptoms to be taken seriously and to find some answers and treatment. Wishing you the best and please feel free to keep us posted on how you are doing and to ask questions. Richard (Team Member)
christine.laaksonen Community Admin
Hello , I just wanted to check in with you. I know it’s been several days since your post and am just wondering how you’ve been doing. As Richard pointed out in his comment, you deserve to have your symptoms taken seriously and to get answers to what is causing those symptoms, and I think it’s reasonable to see if you can get in earlier or to at least get on a cancellation list to be seen earlier. Please know that our community is here for you. Sending you gentle hugs! — Warmly, Christine (Team Member)
Io123 Member
Hello, thank you so much for the message and checking in. My Consultant has arranged a CT pneumocolon to double check the bowel again. I’ve never had this scan so I’m hoping this is a positive step with regards to further investigation to hopefully get some answers. It’s been arranged to hopefully be done before my appointment which is in two weeks time - either way I’ll see my consultant in two weeks so hoping I’m able to express my symptoms clearly and not bottle up when I get in there!
1. christine.laaksonen Community Admin
  oh I'm so glad that you've got something else scheduled to hopefully help figure out what is causing your symptoms! I am also crossing my fingers this is a positive step in the direction of you getting some answers, and then some relief. Please, if you're comfortable, keep us posted with how you're doing, and let us know how your appointment in two weeks goes. We'll be hopefully for some clear and positive results so that you can get some answers! -- Warmly, Christine (Team Member)
Vern Laine Moderator & Contributor
Hiya, sorry to hear you're not feeling well, but my simple answer is "yes", you must always advocate for yourself. I only say this because I was in the same boat when I was unwell yet the tests say I'm "fine". I was lucky in a way and by the time I had already seen several doctors, I had one that had seen my symptoms before and figured out what I had (Crohn's).
Sometimes you have to insist even though you don't want to be a "burden". You deserve to know.
Vern - IBD Team Member