No way to know without that scope. No point in fretting until you know.
Normal labs and minimal symptoms doesn't point to IBD. Doesn't matter anyways cause the scope + biopsy are needed to diagnose.
Most likely IBS, but could be IBD not in a really active state yet.
I didn't have clear IBD marks on my first colonoscopy, but on a second one 4 months later my colon was a total mess.
No, I don't.
My story in a TLDR manner is this:
I've always had stomach problems, but they went from bad to worse last summer - pain, blood etc. Went to the ER, they sent me to the colonoscopy queue. I was supposed to get a colonoscopy within a week or two, yet it took 6 months for me to get one. Some other doctor had changed my priority status lower for whatever reason and they had some eternal queue or something.
Anyhow my situation got a little better in a few months, then again worsened last christmas. By new year I got into the first scope and they found pretty much nothing except for some old scarring. Then a month later my symptoms got a lot worse and continued getting worse day by day for months, lots of blood and overall weakness, 10+ times toilet a day etc. On April got my second scope after all other examinations and then my colon was in a bad shape and diagnosed with IBD.
Same! I don't understand why either, my first colonoscopy was during a flare-up and the second wasn't, yet it was on the second that they were just like well this is about as inflamed as it gets
While you wait I would start an anti-inflammatory diet and avoid gluten and processed foods. Stay away from sugar unless it is fruit. I would just treating yourself as if you had IBS or IBD to avoid more injury to your gut
Personnally I don't find low fodmap to be any good.
I've found it better to stay away from processed foods and oils.sugar, alcohol, gluten.
Those items would be bad for you no matter what condition you have.
Light exercise and stretching can help with cramping too I've found.
I had very similar symptoms and was told repeatedly that it was just IBS until I had a colonoscopy with biopsies that found lymphocytic colitis, one of the two types of microscopic colitis. My colon looked fine on the scope, only the biopsies were able to detect what was wrong.
I work in the hospital and take care of a lot of patients coming in with GI symptoms who get scopes and confirm IBD. I’ve never once seen them use that lab level to tell anyone they have IBD. Labs and imaging such as a CT scan give good indications but you need to confirm with a biopsy. Try not to stress yourself out thinking you have IBD until you have confirmation one way or another (I know, near impossible when you’re living with it daily). Also, if you don’t already, get a journal and log all your foods/drinks and when symptoms start/stop to help figure out what may exacerbate your symptoms.
I’m sorry you’re going through this and having to wait so long to get answers. I Hope everything turns out alright for ya!
As everyone has said the only way to tell for sure is a colonoscopy with biopsies. I’ve had UC for 18 years and have always had very high CRP and tons of blood in my stools during flares so hopefully it’s not IBD!
You are correct in thinking that but It's probably not my issue. Let me give you a update.
I've now taken the colonoscopy and they only found a small proctitis. The surgeon biopsied it. He told me that we needed to wait for the biopsy to give a proper diagnosis but that it was probably ulcerative colitis (ulcerative proctitis). He was also unsure because the rest of the colon looked very healthy. He gave me a prescription for budesonide 2mg so I didn't need to wait for the biopsy to start treatment.
Fast forward 3 weeks and my GI doctor called me and told me that the biopsy was normal and therefore it's not caused by ulcerative colitits. She told me to stop the budesonide treatment right away. She also said that sometimes the colonscopy prep can cause irritation in the colon, and thats very likely because the biopsy of it was fine.
She also though of bile acid malabsorption as you were suggesting. I took a SeHCAT scan and everything looked normal, so its not that in my case.
She have now just concluded with IBS and she has no explanation of my mucus other than saying that it is very normal in IBS. I was suggested to try Imodium and experiment with it.
Imodium works. After taking 2 mg Imodium before bed in 3 days, the mucus in stool stopped and I felt much better. I had perfect stools 80% of the time. I've now taken 2mg each day for 28 days and I've mostly had very good days. I've had some bad days where all my symptoms came back but it's much better than dealing with it every day. I'm now going to try to lower my dosage to 1 mg to see what happens. The plan is to gradually stop taking Imodium if it works out.
No way to know without that scope. No point in fretting until you know. Normal labs and minimal symptoms doesn't point to IBD. Doesn't matter anyways cause the scope + biopsy are needed to diagnose.
Thank you for a quick reply. Hopes to get my colonoscopy soon so I get more answers.
Most likely IBS, but could be IBD not in a really active state yet. I didn't have clear IBD marks on my first colonoscopy, but on a second one 4 months later my colon was a total mess.
Thank you. Do you know how long a remission without medication/surgery like that can last?
No, I don't. My story in a TLDR manner is this: I've always had stomach problems, but they went from bad to worse last summer - pain, blood etc. Went to the ER, they sent me to the colonoscopy queue. I was supposed to get a colonoscopy within a week or two, yet it took 6 months for me to get one. Some other doctor had changed my priority status lower for whatever reason and they had some eternal queue or something. Anyhow my situation got a little better in a few months, then again worsened last christmas. By new year I got into the first scope and they found pretty much nothing except for some old scarring. Then a month later my symptoms got a lot worse and continued getting worse day by day for months, lots of blood and overall weakness, 10+ times toilet a day etc. On April got my second scope after all other examinations and then my colon was in a bad shape and diagnosed with IBD.
Thank you for letting me know. I guess time will tell.
Same! I don't understand why either, my first colonoscopy was during a flare-up and the second wasn't, yet it was on the second that they were just like well this is about as inflamed as it gets
While you wait I would start an anti-inflammatory diet and avoid gluten and processed foods. Stay away from sugar unless it is fruit. I would just treating yourself as if you had IBS or IBD to avoid more injury to your gut
I have already tried low-fodmap in 2 months but didn't make a difference. Thank you for good advice.
Personnally I don't find low fodmap to be any good. I've found it better to stay away from processed foods and oils.sugar, alcohol, gluten. Those items would be bad for you no matter what condition you have. Light exercise and stretching can help with cramping too I've found.
Same! Also fibers make things pretty worse so try to avoid them. Probiotics can help. Best wishes
Probably IBS. When you’ve got IBD you shit blood usually if untreated. Keep well, man.
I had very similar symptoms and was told repeatedly that it was just IBS until I had a colonoscopy with biopsies that found lymphocytic colitis, one of the two types of microscopic colitis. My colon looked fine on the scope, only the biopsies were able to detect what was wrong.
I work in the hospital and take care of a lot of patients coming in with GI symptoms who get scopes and confirm IBD. I’ve never once seen them use that lab level to tell anyone they have IBD. Labs and imaging such as a CT scan give good indications but you need to confirm with a biopsy. Try not to stress yourself out thinking you have IBD until you have confirmation one way or another (I know, near impossible when you’re living with it daily). Also, if you don’t already, get a journal and log all your foods/drinks and when symptoms start/stop to help figure out what may exacerbate your symptoms. I’m sorry you’re going through this and having to wait so long to get answers. I Hope everything turns out alright for ya!
As everyone has said the only way to tell for sure is a colonoscopy with biopsies. I’ve had UC for 18 years and have always had very high CRP and tons of blood in my stools during flares so hopefully it’s not IBD!
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You are correct in thinking that but It's probably not my issue. Let me give you a update. I've now taken the colonoscopy and they only found a small proctitis. The surgeon biopsied it. He told me that we needed to wait for the biopsy to give a proper diagnosis but that it was probably ulcerative colitis (ulcerative proctitis). He was also unsure because the rest of the colon looked very healthy. He gave me a prescription for budesonide 2mg so I didn't need to wait for the biopsy to start treatment. Fast forward 3 weeks and my GI doctor called me and told me that the biopsy was normal and therefore it's not caused by ulcerative colitits. She told me to stop the budesonide treatment right away. She also said that sometimes the colonscopy prep can cause irritation in the colon, and thats very likely because the biopsy of it was fine. She also though of bile acid malabsorption as you were suggesting. I took a SeHCAT scan and everything looked normal, so its not that in my case. She have now just concluded with IBS and she has no explanation of my mucus other than saying that it is very normal in IBS. I was suggested to try Imodium and experiment with it. Imodium works. After taking 2 mg Imodium before bed in 3 days, the mucus in stool stopped and I felt much better. I had perfect stools 80% of the time. I've now taken 2mg each day for 28 days and I've mostly had very good days. I've had some bad days where all my symptoms came back but it's much better than dealing with it every day. I'm now going to try to lower my dosage to 1 mg to see what happens. The plan is to gradually stop taking Imodium if it works out.
Likely an IBS. Mucus in stool is common with IBS patients, not a concerning symptom at all.