Hello, I think I have Crohns. Did you have a similar experience getting diagnosed?

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Hi, I have been diagnosed with IBS for 5 years but last year my symptoms got worse so I went back to the doctor who recommended stool and blood tests. Both CRP and FCP were high (28, 253). I was referred to a gastro specialist. A few months later I had a consultancy appointment where I explained my symptoms, doctor asked for repeat CRP and FCP and they again came back high (29, 260). My blood test was always normal though. I had an ultrasound where the doctor found inflammation in the ileum but the test was not too definitive because the picture wasn't the clearest but he still reported the findings back to the consultant that my ileum was showing inflammation. Symptoms wise I always have a mushy or watery stool that comes very fast, I have a lot of yellow/white mucus but I only have blood in small amounts when I wipe nothing as bad as what some people have. I always have a terrible lower backache after going to the toilet and abdominal pain about 24/7.

I've got a colonoscopy and MRI also scheduled but I would like to know if people had a similar diagnosis experience and how it turned out.

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  • Edited

    I went through a similar thing. IBS got worse and worse, to the point where I had diarrhoea every day for 4 months. calprotectin was around the same as yours. had a colonoscopy but is was unsuccessful as my splenic flexure is too tight to get the scope round 😦 they found a few polyps but that's all. had a ct colonography which was pointless as you can't see chrones on it (and consultant radiographer agreed with me). the GI specialist just washed his hands of me, told me it's just IBS and to take coedine and Imodium.

    to be honest that was the worst time I ever had, and it's never been that bad again (touch wood). the only way to diagnose crohns is with a colonoscopy, but if that's negative it could just be bad IBS. have you tried modifying your diet etc?

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    • Posted

      Thank you for your response! That sounds like a horrible experience you went through but ofc if it gets bad again like that maybe get in contact with your GI because mine said it can be hard to detect.

      I've been a pescetarian for 5 years as well so no major changes to my diet, I think maybe soy protein irritates it but I'm not too sure because I still get flares 😦

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    • Edited

      have you looked into the low FODMAP diet? it's not specifically for diarrhoea, more gas and bloating but I found it did calm my IBS quite a bit. I still had major flares on it, but nothing will ever stop IBS completely.

      I have found that plain bland foods, no fats, peppermint and Imodium are the best when in a bad flare. along with pain killers, buscopan and a good old hot water bottle!

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  • Edited

    It sounds like the problem's in the ileum and if that's the case its just as well you're scheduled for an MRI as a colonoscopy wouldn't necessarily pick that up. It isn't true that the only way to diagnose Crohn's is with a colonoscopy because Crohn's can exist ANYWHERE in the intestinal tract. If you have Crohn's it can be picked up by a number of investigations, it's just that some doctors can be restrained with their investigations and consequently people continue to suffer for years with no firm diagnosis.

    it sounds like your doctor is being thorough and i wish you well for those tests. Just make sure you take the pain relief and sedatives offered with the colonoscopy, and ask for them if not offered. The MRI is pretty painless as far as investigations go

    Good luck x

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    • Posted

      Hi thank you for your reply as yes I think so, he did say it was hard to detect so he wanted to do all the tests but my inflammation is no where near as high as some people who have it in the thousands so I'm still not too sure.

      I will definitely go for the sedatives as thinking about the colonoscopy makes my bowels shudder.

      Thank you 😃 x

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  • Edited

    Hello Sophia,

    Firstly, I'm sorry to hear of how much you've suffered with various symptoms!

    I was first advised 2years ago that it was probably just IBS but I then went downhill pretty quickly over a period of 3-4months. Due to the fact my sister was diagnosed with Crohn's 2 years before my symptoms begun, the hospital had wanted to do checks from the very beginning to rule out Crohn's as it often runs in the family. So I was lucky in that sense.

    I was referred to GI also and waited for a colonoscopy etc. My bloods were always normal which was so frustrating because I was thinking how can I be in this much pain and they're telling me everything is normal?!

    I actually ended up being admitted to hospital after I had an X-Ray done which showed my large bowel was very inflamed. I was still waiting for a consultation appointment to have a colonoscopy done at this time and I could have been waiting another 12months for it! But my symptoms got so bad that I was in constant excruciating pain & vomiting even after drinking water. I lost so much weight and was very weak so I just had to persist in going to A&E about once a week! Each time I got sent home and was told to take painkillers because all my tests weren't showing anything.

    But eventually as I mentioned one doctor thought okay there has to be something wrong & sent me for an abdo x-ray. So I would suggest would you be able to ask your GP for an X-Ray to be arranged? This won't show whether it's Crohns but it will show any inflammation, blockages or abnormalities and could then speed things up for you i.e. get you a sooner colonoscopy or MRI date...After I got admitted to hospital I had a colonoscopy the very next morning which confirmed I have Crohn's. I then started Steroid treatment and was discharged a week later...

    That's just my thoughts anyway based on my experience. To this day my bloods never seem to show up anything meanwhile I'm having flare ups quite regularly! It's a strange old thing...

    Hope you get the help you need soon 😃

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    • Posted

      Hi thank you for your reply 😃 I got asked to do an ultrasound instead of an xray but I might have to get in touch with my GI because everything is taking so long, sorry to hear you went through that it sounds awful, hope you feel better now.

      Thank you 😃

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    • Edited

      hi sophie. yeah I had ultrasounds done too but they arent very clear!! the xray clearly shows the larger areas of inflammation so hopefully give better results.

      hopefully you get help soon!

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  • Edited

    i do not have Chrons myself but i do have IBS, at one point it got back enough i would have diahrea a couple tines a week with bad cramps etc. however they did a stool sample which was normal and also checked blood for inflammation markers, which were low (wgich is good) did they do any bloodwork like that in your work up? A big thing they told me was that my symptoms will go away when i have a blowout or pass gas-the pain stops and i feel fine, with Chrons they said the pain may get a little better but often still continues after a movement, like what youre describing. Still have hope, Chrons is rare, IBS is common abd other thongs can cayse this kind of issue too, please let us know how the colonoscopy goes and I'll be praying it goes well.

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    • Edited

      low vitamin D is very common, on top of that general malabsorption of one or two vitamins is common in alot of people. I personally have low normal B12 ranges often. but the inflammation markers are a concern, they are usually only elevated with a condition, I think its good they are doing this test

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  • Edited

    i do not have Chrons myself but i do have IBS, at one point it got back enough i would have diahrea a couple tines a week with bad cramps etc. however they did a stool sample which was normal and also checked blood for inflammation markers, which were low (wgich is good) did they do any bloodwork like that in your work up? A big thing they told me was that my symptoms will go away when i have a blowout or pass gas-the pain stops and i feel fine, with Chrons they said the pain may get a little better but often still continues after a movement, like what youre describing. Still have hope, Chrons is rare, IBS is common abd other thongs can cayse this kind of issue too, please let us know how the colonoscopy goes and I'll be praying it goes well.

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