Recently I had a colonoscopy as I have been have symptoms of upper right side abdomen pain, chronic diarrhoea, blood and mucus in stools, fatigue and weight loss.
The colonoscopy showed I had some inflammation in my left colon and rectum, and I had some biopsy’s taken.
I have had a colonoscopy before around 2 years ago including a biopsy which came back normal. However as my symptoms have only been getting worse I asked to be referred to gastro, who suggested repeating the test.
I have a follow up appointment in December. But I was wondering what could cause inflammation in the colon this time round that was different to before? I have read online that IBD can causes inflammation in the colon, but would this not have been picked up from the biopsy when I first had the colonoscopy done?
I really want to get to the bottom of my symptoms but at the moment I feel like I’m going round in circles with the doctors and am not getting any closer to answer.
Thank you
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May998
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Hi May, its no good saying DON'T WORRY, because we do when something like this happens
I had the same as you.
I have Diverticulitis and I.B.S and when I had my Colonoscopy they took Biopsies and removed a Polypus.
BUT there was no Cancer found.
Then a couple of months ago i had more trouble with the upper right side of my stomach. I was actually already in Hospital for Suspected Stroke.
Anyway after all the Scans and test results came back
The Doctors came back and told me that I had an Enlarged Liver, Blocked Bile Duct, Cyst on the Pancreas and Gallstones..
Well my Mum had the same thing and it was Pancreatic Cancer.
So I thought ( OH WELL, BUGGER IT, IF I GOT IT,,, I GOT IT!!!!! ).
I honestly didn't care. Im in so much pain because of the Fibromyalgia and Rheumatoid Arthritis, Osteoarthritis, Osteoporosis. I also have a 16 cm Haitus Hernia, Umbilical Hernia.
2 Heart Valve's that aren't working properly and they can't find a Surgeon that would do the Operation to replace them because apparently i wouldn't survive the OP. I also have C.O.P.D and Asthma. So I thought, well that's my way out. But a few weeks from then, they have told me that my Liver have gone down and my Bile Ducts are Clearing..
I still have the Cyst on the Pancreas and the Gallstones.
But it's my Gallbladder itself thats causing the problem and so it has to come out.
But now I have to see the Anaesthetist because they can only do this operation under a General Anaesthetic .
What i am trying to say is,
( DON'T THINK THE WORST )
Perhaps you have something like i have.
Not knowing is the worst, because your Brain Cogs start turning and your mind goes everywhere.
Thanks Gjkas for replying and sharing your story. I’m sorry to hear you going through a difficult time, I hope you all the best and will be thinking of you.
And your right not knowing is the worst and it’s hard not to think the worst either!
If there was no active inflammation at the time of your first colonoscopy then biopsies won't have picked anything up. I've had UC for 50 years but if I'm in remission at the time of the tests then they come back clear.
You disease may not have progressed enough or been active enough to show on colonoscopy at the time. Hopefully they took biopsies from various locations because you can get a diagnosis that way, or by mri.
Your Gastro hopefully also did a stool test to not only check calprotectin but also ova and parasites. There are a few other things that can cause IBD like symptoms and they can be ruled out easily. C diff can also cause pain, mucus and bloody stools.
Yeah I did a stool calprotectin test, the first one is about 1year ago which was around 600. But I repeated this around a week ago, so just waiting for the results now.
Although my crp blood test have been normal.
I have never heard of c diff before and it’s not been mentioned by the doctors, so this is really handy to know.
If you calprotectin was 600 and you were not sick with cold or anything when you took the test then your doctor needs to get on that ASAP. Around 50 or less is a normal reading. Sorry your doc seems to be stalling, I would follow up and ask what is next? and what’s going on. If your rheumatologist isn’t working for you, I would ask your PCP what’s going on, as your pcp should be copied in all your reports. Wishing you all the best in getting the answers and treatments that you need, sometimes doctors are very frustrating.
I have had a difficult time with my GP and it’s been hard just getting referred. I finally been referred to a gastroenterologist, who was they one who suggested repeating the colonoscopy and stool test. My follow up appointment is in December. I have asked for a sooner appointment as my symptoms have been really bad, but they don’t have any appointments, there’s quite a long waiting list.
But it’s been years of going round in circles with my GP, and they have been very unsupportive or understanding to how much my symptoms have been affecting my life.
Sorry your having to deal with that. We all need to have our doctors on our team.
You may want to shop for a new doctor, your doctor is supposed to be working for you and sounds like yours is blocking you from the care that you need. Crohn’s can get really bad if the inflammation is not controlled.
I had a ridiculous doctor that kept telling me nothing was wrong, and misdiagnosed me one too many times, he was very old and needed to retire 10 years ago. I left him after securing a new female doctor who is very young, but at least she is supportive.
Hi May I was just reading your story. Sorry to hear you have all that going on. It's a lot to deal with especially when you don't have answers yet.
If you see my posts from a few days ago you'll see it's similar to yours. I'm seeing my Consultant tomorrow to go over my outstanding test results, including biopsies..hopefully then I'll be given a proper diagnosis. I'm recovering quite well from whatever that episode was..it was quite dramatic.
You may be lucky to get an earlier appt before December if there's a cancellation, it happens here ( I'm in Scotland )
Meantime try not to worry tho it's not easy is it. Thinking of you & sending good wishes! This is a great site for support I've found so come back if you just need to get anything off your mind,
Hi, sorry for taking so long to respond. I’m still not in a good place. Physically and mentally.
I have had several biopsy take and they all came back normal, nothing to suggest IBD or infection. I got prescribed suppositories for inflammation. But they don’t know why it’s inflamed. And my Doctor don’t think that’s the reason for my symptoms. So said it’s most likely IBS. So I guess that’s a relief that there is nothing seriously wrong with me. but at the same time I feel so ill and nothing seems to help, with my symptoms. And now all my appointments got cancelled. I’ve now started to experience pain in my rectum (sorry tmi), and having to straining so much even though it’s daihorrea. I feel like all my muscles down there have just got so weak. Something I feel like I can’t deal with this anymore. I know I should be grateful that I don’t have IBD, but I feel like I can’t live like this and no one take me seriously!
I’ve had colitis 26 years and when it’s controlled which is mostly, even colonoscopies show nothing. The last one I had was really healthy, all that was shown under the microscope was some very minimal activity but when it’s controlled there’s no inflammation. So might have been early onset.
I’m currently having a bit of a flare up so am experiencing lower right abdominal pain and mucus every time I pass. My first stool sample was raised for inflammation but latest one was normal again but still getting symptoms - so they’re thinking IBS now
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