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Can IBD be present even when colonoscopy 'looks normal'?

Hi all, so I've been suffering with symptoms for a while now - left-side abdominal pain (most tender & severe in the lower abdomen), some blood and mucus in stool, bloating, and some diarrhea and constipation. In the past I've had issues with nausea, though not so much recently. 6 weeks ago a stool sample test showed I had 'incredibly high' calprotectin levels and my faecal occult blood test was positive. Bloodwork (inc. iron levels, autoimmune markers, blood count, and inflammation markers) was all normal. I thought IBD was considered autoimmune, but my GP said it wouldn't show up as such in bloodwork. Can anyone confirm this?

Test results look good- I'm very confused

Today I had a colonoscopy and was told it all 'looks normal', no inflammation, nothing worrying to be seen. They took 3 biopsies to double check. Now I'm left feeling very confused as to why my calprotectin would be so high previously and yet now there's no inflammation in my colon. I can't imagine it was due to an infection that's been and gone, as I still have symptoms, and have had certain symptoms on and off for years.

I'm worried they could've missed something

Is it possible they could still find evidence of IBD in the biopsies, even though it looked normal? Could the calprotectin be high due to activity in the small intestines instead? Also, I know this is an IBD forum, but I'm also very concerned about the possibility of cancer, especially as it looked to me like the colon wasn't 100% cleared out. So, I'm worried they could've missed something. Not expecting anyone to know, but just in case, do you know if cancer could go unseen and then be found in a biopsy?

Thank you!

  1. Hi

    1. Hello!
      I don't have an answer to your question and I am so sorry you are suffering but I wanted to reach out because I am currently in a similar situation! I'll share my story in hopes of it helping you and others as well.

      I'm a 31 almost 32 year old female. Back in my mid twenties I started suffering from blood and mucus in my stools, nausea, a weird feeling in my upper left abdomen, and CANKER SORES! Lots and lots of canker sores!

      Finally in 2018 after a lot of courage and time spent in prayer, I sought medical attention. Bloodwork and stool samples started the journey and all came back normal.I then had a colonoscopy and at that time biopsies were done as well. My GI Doctor at the time told me I needed to go on a LOW FODMAP diet and the only findings was a tortuous colon but that wasn't the issue. From there I had a barium swallow done, nothing. My bowels moved just fine and all was good they said.

      His last procedure in the fall of 2019 was
      the pill camera, still NOTHING! He chalked it all up to IBS and offered butt lube to help with the pain from my stools. I refused to pick it up and cringed as I paid those medical bills.

      I then began to look at what I was eating. Which to be honest was/is fairly healthy. I'm 5'2'' and weigh 115 pounds, I've always been fairly disciplined in what I eat. I did however find that some foods did trigger the canker sores, such as spinach and tomatoes/red sauce etc. So I stopped eating them and continued to dive in to finding other foods that were upsetting my body. I avoid acidic foods as much as I can and I limited my alcohol consumption and even bought an alkaline water filter to keep my body at the perfect PH. On paper I was/am doing everything right. Yet the blood and mucus has only gotten worse! The stools that were once normal had turned into little turds and then now diarrhea with all the blood and mucus present, EVERY SINGLE POOP. So I did my research and found a new GI Doctor that was affiliated with a different hospital. I have since gotten my blood work done, they checked my liver, pancreas, CBC, and a ton of other stuff, all came back normal.

      Last week I went for a CT scan and they found what appears to be an air pocket in my stomach and swollen rectal lymph nodes. On Monday I have an appointment with my Gyno for an ultrasound as the swollen rectal lymph nodes could indicate infection, virus, or even cancer. She doesn't believe it to be cancer but Google has me thinking it could be. I had thought that cancer would show up on a CT scan or bloodwork but I guess not.

      When I typed in "anal cancer" it says 90% of cases come from HPV. I've always had normal paps but I guess they don't check for HPV until you are 31, or at least my doctor never did. I had the vaccines for HPV but still you just never know with all the strands out there and it is said that 80%of the population has it. If anyone is suffering from HPV I did learn that AHCC can help cure it. SUPER EXPENSIVE but look it up and read the testimonies. It has saved people from cancer! So needless to say I started taking that a few days ago.

      At this point all I can do now is rest in God's word and pray He is at work for me, as I know He is. Praying for everyone on here as well. <3

      1. I had ulcerative colitis/crohns when young, much mucous and blood with that. Very painful.

    2. Yes. You can have a normal colonoscopy and still have Crohn's disease. There are a number of reasons for this:
      1) Your inflammation might be in another part of your digestive tract (stomach, upper small intestine etc.).
      2) Sometimes, I've been told, Crohn's is more under the surface (and is hence not easily recognizable). A biopsy might reveal it. In other words, the colonscopy can look okay but you still might have Crohn's symptoms/inflammation...a respected surgeon told me this.
      3) You could be in remission at the time of the exam but still have Crohn's (some of my scopes looked okay because I was in other times they were worse).
      There are other possible reasons for this. But you get the idea. Just because it doesn't show up on the colonscopy doesn't mean you don't have it. Hope this helps!

      --Matt (team member)

      1. Hi there I’m going through the same problem and am now going back for a colonoscopy for a third time because of bleeding for 5 days and diarrhea and pain I’m just praying they find something this time so I don’t look insane
        you can read my story on my page and I hope you get an answer soon

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