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Crohn's Disease
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Posted 5/24/2017 7:09 AM (GMT 0)
I had my MRI results yesterday and Im a little confused. I got sick I'm December and after having a calproctecin level of greater than 6000 I had a colonoscopy which showed inflammation an ill-defined abnormality in caecum with inflammation at mouth of terminal ileum. Biopsies were taken which showed no evidence of crohns. They couldn't visualise Small bowel therefore had small bowel MRI. I also redone my calproctecin stool test which is <15 (within normal range) it also stated on lab report "if previously diagnosed with crohns result would indicate remission" the consultant didn't tell me straight away that I didn't have crohns until I showed him my calproctecin report and said its very reassuring and he didn't think I had crohns and MRI came back normal. I was meant to go for another colonoscopy but he said its invasive and I wouldn't benefit from it. He said he this i had a severe infection but I'm not so sure as he didn't seem 100%. My question is If I'm in remission and have no inflammation in the gut wouldn't my MRI be normal? I don't understand if people go for an MRI and they have no current inflammation would crohns still be detected in an MRI? The consultant said there is a small percentage I do have crohns as nothing is 100% and if I get sick again to come back. Is it unlikely I have crohns going by my results. Is it possible I'm in remission and that's why my results were normal? I only have mild symptoms but I also have IBS
Posted 5/24/2017 11:54 AM (GMT 0)
So what were the MRI results? Did you get a printout of the results with the report summary?
Posted 5/24/2017 9:26 PM (GMT 0)
He didn't give me a report he just said my MRI was okay and he thinks it was infection. I gave him my calproctecin report and he said it was really reassuring and I won't need colonoscopy
Posted 5/25/2017 12:14 AM (GMT 0)
Then I don't get this bit.

My question is If I'm in remission and have no inflammation in the gut wouldn't my MRI be normal?

Well yeah, it would be but apparently your MRI was normal. Are you asking if the MRI would show past evidence of Crohn's if you are in remission now? If so, I don't think so. Not 100% certain on that 'cos I'm not a radiologist who interprets MRIs for a living, but reasonably sure. Biopsies from a colonoscopy do show past evidence of inflammation, however - some inflammatory changes to the cells are permanent.

Basically, it seems as though your consultant has done everything he could and is probably correct in assuming that another colonoscopy would be a waste of time at the moment. I would move on from this and forget about Crohn's. It's a sh!t disease anyway, so if you have dodged that particular bullet then be glad for it.
Posted 5/25/2017 9:26 PM (GMT 0)
My MRI came back as normal but if im in remission how would they know if I have crohns or not? Does remission mean no symptons or inflammation? My calproctecin was with in normal range yet I still mite have crohns as I could be in remission. The Dr also said there's a small percentage I mite have it and if I get sick again I need to go back
Posted 5/25/2017 9:28 PM (GMT 0)
They as also weighed me and I've lost 1 stone in 2 months yet I only have mild symptoms which I was told could be my IBS. 2months ago I was on the scd diet and eat a lot more since
Posted 5/25/2017 9:38 PM (GMT 0)
I'm thinking the worse as I've lost weight. I've gone from 68.8kg to 58.8kg. I'm now eating things I probably shouldn't to put the weight bk on. Would I have other symptoms with weight loss.
Posted 5/25/2017 10:04 PM (GMT 0)
I seriously think you need to forget about it. Believe me, if it was Crohn's you had the first time, it will come back. But your consultant can't diagnose with Crohn's now, because there is simply no evidence for it. The weight loss isn't really that significant; loads of people lose weight on the SCD 'cos it's a hard diet to get enough calories on, without having a scientific dedication to nutrition. The UC board is full of folks struggliing to regain weight even in remission, while I gain 5lb by looking longingly at a massive cake. (I'm not technically overweight but I feel it.)

So yeah, forget about it and move on. Sorry to be blunt but I think you've reached a point where your dwelling on it has become counterproductive. Why not be happy that you don't actually appear to have Crohn's instead?
Posted 5/26/2017 2:31 AM (GMT 0)
It it really is Crohn's, then it sounds like you are in remission now, so I kind of agree with NCOT. If it is Crohn's it will come back eventually and you'll get diagnosed then, and in the meantime, try to go on and not focus on it. My first colonoscopy and upper GI tests were all normal and six months later, I became severely anemic and they repeated the tests and the biopsies were positive for Crohn's. Sometimes you just have to watch and wait. Try some protein shakes to gain back your weight. Severe bacterial infections definitely can mimic Crohn's
Posted 5/26/2017 6:52 AM (GMT 0)
Thanks guys. You've answered my question. So many people dony get diagnosed while in remission. And all my results were good. I'll just have to get on with it and stop dwelling on it. Thsnjd for all your advice guys and I wish you the Best xx
Posted 5/26/2017 1:15 PM (GMT 0)
Yes, I would be lying if I said there was no chance it was Crohn's whatsoever. I got lucky in getting a diagnosis the first time - obvs my colonoscopy must have show active Crohn's, despite the very mild symptoms at the time. But if I had been in remission, I presumably would have had to wait a few more months or years for the diagnosis.

But that said, you did manage to have tests done when you weren't in remission and they didn't indicate Crohn's. So hopefully that really means it was a one-off which won't ever come back. Best of luck!
Posted 5/26/2017 10:12 PM (GMT 0)
Yes early diagnosis is the key. I did have colonoscopy and did have inflammation the biggining of small bowel. Biopsies were taken and it was acute inflammation. Can't remember exactly wat it said but I assume crohns is chronic inflammation, don't know if that makes s difference but biopsies showed no evidence of crohns. Unfortunately they couldn't get to small bowel but so far so good I suppose and as the biopsies are negative with such a high calproctecin I'm prob looking at infection but yes there's a small chance its not but I'm not going to dwell on it. Its just ice been getting mild cramps and the last 2 weeks going toilet 3 times a day but its mild. From reading about crohns its quite easy to get paranoid.
Posted 5/26/2017 10:19 PM (GMT 0)
I just want to point out that wen I had the severe symptoms it only lasted a week. Consultant said it wouldn't just suddenly disappear after a short period of time which it did. I got better on day 8. I really do hope they find a cure for this or more manageable treatment.
Posted 5/27/2017 1:25 AM (GMT 0)
Crohn's is a fairly rare disease. Only about 100,000 people in the UK have it, which isn't a lot out of 60 million people. There are lots of stories of folks on this board getting fobbed off before they finally got a diagnosis, but I would say the one thing you haven't been is fobbed off - if you'd had clearcut Crohn's you would have received a diagnosis by now.

Yeah, I would love a cure or at least a treatment which actually works for everyone and doesn't stop working after x months/years... :-/
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