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Repeating Colonoscopy after normal results?

May998 profile image
17 Replies

Hello,

Just wanted some advice I guess.

I don’t know if this is right place to post as I have not been diagnosed with Crohns or colitis. But I would appreciate if anyone could help.

I have been having diarrhoea, stomach pain, weight loss. For around 4years probably more.

I had a colonoscopy around 2year ago and it came back normal. My was calprotectin around 600.

I’ve been struggle to manage my symptoms and to keep the weight on. It’s had a massive impact on my life, especially not knowing what’s wrong with me.

I also been tested for gluten allergy and that came back normal too.

So recently, I decided to go to see a different doctor and he decided that I should have another colonoscopy.

I was just wondering, considering I only had the previous colonoscopy 2years, is there much point in putting myself through that again?

I really don’t no what to do, I’m tired of having so many test and not getting any answers.

I just want some advice, and if anyone else has been in this situation.

And any ideas on what could be wrong with me. I’ve been thinking IBS, but can IBS cause sever symptoms and weight loss.

Thank you so much,

I really appreciate it.

Apologies if there is any spelling or grammatical errors.

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May998 profile image
May998
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17 Replies
Broken_Doll profile image
Broken_Doll

Hi,

Did they take any biopsies at the time of your colonoscopy? I believe it is possible for it to be missed during a scope unless in an active flare up. A calprotectin result of 600 does indicate possible IBD (crohns or UC). There’s also a chance of it being higher up than the scope can go, which would need other tests such as a CT (which isn’t always reliable) or a pill cam test. Have you had any of these tests carried out?

I hope you get some answers soon

Emma

May998 profile image
May998 in reply toBroken_Doll

Thanks for replying. They did take biopsies and that came back all fine.

No I haven’t had a CT or pill cam test. I think I should find out about this test

Thank you, this has been really helpful.

Broken_Doll profile image
Broken_Doll in reply toMay998

You’re welcome! Good luck!

Viklou profile image
Viklou

I'm similar to you, lost loads of weight, bad symptoms. They want to do another Colonoscopy to take biopsies in terminal ilieum. At times I can manage my symptoms as they seem to ease up. Others times I really struggle. Good luck and go for it

May998 profile image
May998 in reply toViklou

Thanks for reply. Sorry to hear your struggling. Can I ask, what helps to manage your symptoms?

Thanks 😊

Viklou profile image
Viklou in reply toMay998

Diet, sometimes pain relief and anti sickness

FRreedman profile image
FRreedman

Hi,

You went to a different doctor, but you want him to use, what may be, flawed results and scans? Unless scans are less than a few months old, no consultant would even think of using them.

Your Calprotectin test indicates probable IBD, and your new doctor may want his own radiographic to do a scan, and take some biopsies, and then have his own radiologist interpret the new scan. My advice is to for the scan, and see what happens, because, where you are now, you will never know the answer or get relief from the symptoms.

May998 profile image
May998 in reply toFRreedman

Thank you for reply and your advice.

It’s really helpful 😊

IBSNetwork profile image
IBSNetwork

It is important not to self diagnose IBS. Please speak to your GP for a diagnosis.

maceyukk profile image
maceyukk

Colonoscopies don’t always pick up Crohn’s I got diagnosed with an MRI. My colonoscopy was clear and I had calprotectin of 500 so if it comes back clear again they should suggest an MRI as standard if not I would push for one! As Crohn’s can also be in your small bowel which a colonoscopy can’t reach x

May998 profile image
May998 in reply tomaceyukk

Thanks, I didn’t know this. So this is really useful to know.

Viklou profile image
Viklou

Have you had a calprotectin test recently. Like FReedman said two years ago is a long time ago

May998 profile image
May998 in reply toViklou

I had that about a year ago, that would be the most recent calprotectin test. The doctor ask me to to repeat it, but it’s been really difficult with the diarrhoea. My symptoms seem to be getting a lot worse.

Sarahvit profile image
Sarahvit

Hi May,

Yes I would get the second colonoscopy. You are seeing a new doctor who ( in the words of my second gastroenterologist in FL who said I needed a “pair of fresh eyes”) can see what maybe the others one missed. Also you might want to try lactose free milk and lactose pills when you eat any dairy. My sister had that problems and the doctors couldn’t figure out what was causing the problem. With me I was having a severe burning 🥵 pain in my stomach and after seeing all those doctors in Wyoming and Utah and the first gastroenterologist in Florida who over a 2yr period left me no answers as what was causing all that pain and nausea over a 2yr period. The doctor who said I needed a “fresh pair of eyes” was able to see that I had stomach tissue in the bottom of my esophagus was excreting stomach acid and that was the cause of the stomach pain. He prescribe protonix which made it where I could eat again. I had lost around 30lbs over those two years. So see if getting away from dairy products and taking with the lactose pills when you can’t get away from dairy helps. Follow up with the new doctor who may see or the pathology department may see ulcerative colitis. This was found in my intestines over 10yrs ago. It is now in deep remission.

May998 profile image
May998 in reply toSarahvit

Thanks for your advice and sharing your story, sorry to hear you went through a difficult time.

Sarahvit profile image
Sarahvit in reply toMay998

I hope this new doctor is able to help you get some relief. 😊💕🦋🌻🌷

Grandson1 profile image
Grandson1

I would have the colonoscopy again.

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