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Crohn's Disease Forum » Tests for IBD » Non diagnostic - help and advice needed.


04-29-2017, 06:09 AM   #1
Mulv2222
 
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Non diagnostic - help and advice needed.

Hi there. New to the forum and could do with some guidance.

I have repeatedly visited my gp for the last 8/10 years with stomach issues. Repeated diarrhea, pain, bloating like I'm 9mnths pregnant, blood in stool,. Sometimes the pain is so intense for a few days that I can barely stand/walk. In am tired most of the time and have chronic lower back / sacraillioc joint paint that wakes me through the night.

I've finally got referred for an endoscopy and colonoscopy. They found inflammation of my rectum, and 2 x ulcers in my terminal ilieum. I have received my biopsy results back today. They say :

Mild inflammation of the rectum - biopsies of this were normal.

The ascending colon biopsy was focal active inflammation - which is of Minimal significant.

Ileal biopsies did show mild inflammation with some chronic features.

As the endoscopic appearance was mild with only 2 aphthoid ulceration which is in the normal range, the overall picture is no-diagnostic.

I feel like crying. 10 years is taken me to get this far, numerous toilet achieve and pain, and they're saying this is just normal?!

Can anyone help??
04-29-2017, 06:45 AM   #2
ronroush7
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Hi. I would keep pushing for answers. I could be wrong but I think there is more going on. Have you had blood work done to see if you are anemic? Please keep us updated on how you are doing.
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04-29-2017, 07:33 AM   #3
Mulv2222
 
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From everything I've read it sounds like crohns to me but obviously I'm not a doctor. My mum is celiac but the biopsies were negative for that. Every time I've had bloods done my white blood cells are raised indicating inflammation?
04-29-2017, 08:07 AM   #4
ronroush7
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I am not a doctor but with the blood I would wonder about some form of IBD. Since you are tired all of the time I wonder if you are anemic.
04-29-2017, 04:30 PM   #5
Jabee
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Ulcers are not usually present in either the small or large intestine. All of your biopsies showed inflammation, whether chronic or acute. Something (which may or may not be crohn's) must be causing the ulcers and inflammation. Many crohn's patients have "normal" biopsies in the sense that they do not confirm crohn's, although they do have the disease. I am uncomfortable hearing that your doctors feel the ulcers and inflammation are of no significance and think you need to find out exactly what that means. Do you have a GP who can help?
04-30-2017, 04:14 AM   #6
Mulv2222
 
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Ulcers are not usually present in either the small or large intestine. All of your biopsies showed inflammation, whether chronic or acute. Something (which may or may not be crohn's) must be causing the ulcers and inflammation. Many crohn's patients have "normal" biopsies in the sense that they do not confirm crohn's, although they do have the disease. I am uncomfortable hearing that your doctors feel the ulcers and inflammation are of no significance and think you need to find out exactly what that means. Do you have a GP who can help?
Thanks for your reply. I will get a follow up appointment with the GI /hospital so will ask lots of questions then. Daily problems aren't normal and it's not of 'Minimal significance' to me - it rules my life. They want to do a fecal test which I'm guessing will aid diagnosis?
05-01-2017, 11:17 AM   #7
Scipio
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Aphthous lesions by themselves can indicate Crohn's. In your case they saw a couple plus a lot of mild inflammation in several places. It sounds to me like you could have a mild case of Crohn's, especially when taken together with your symptoms. Your late stage pregnancy may confuse the picture somewhat. It can often be confusing when there are two things going on at once.

I suggest you consult with a GI who specializes in IBD. There are some very good ones in the UK. Perhaps after you've had the baby and things have kind of settled down from that would be a good time.
05-01-2017, 01:36 PM   #8
Mulv2222
 
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Aphthous lesions by themselves can indicate Crohn's. In your case they saw a couple plus a lot of mild inflammation in several places. It sounds to me like you could have a mild case of Crohn's, especially when taken together with your symptoms. Your late stage pregnancy may confuse the picture somewhat. It can often be confusing when there are two things going on at once.

I suggest you consult with a GI who specializes in IBD. There are some very good ones in the UK. Perhaps after you've had the baby and things have kind of settled down from that would be a good time.

Thank you for your reply - I think you may have misunderstood me however as I'm not pregnant Could you point me in the direction of who would be a good person to see in the UK?

I have chatted to a medic friend today who said that the 'normal' and 'Minimal significance' of the biopsies may be in relation to cancer - which is good! She says she can't think of another reason there would be ulcers in my terminal ilieum and that it's definitely not 'normal.'
05-01-2017, 03:20 PM   #9
Scipio
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Dr. Ailsa Hart at St. Marks in London is a prominent IBD specialist.
05-01-2017, 06:12 PM   #10
Jabee
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I'm also thinking that the "normal" part of the ulcers means that they were not specific to crohn's, which in many respects isn't that useful. Less than half of crohn's patients have biopsies that conclusively show crohn's. Other than that I can't see ulcers being normal in any way at all! Have you checked out the doctor directory on the forum?
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