Hello new here

[Legacygb2142]

So I've been having symptoms of crohns for years I had and colonoscopy and endoscopy and they found inflammation in my colon and stomach but the biopsies came back negative I was just wondering if it was possible to have inflammation without a cause if anyone could help i would be really appreciative
P.s I also have Barrett's esophagus im 24 and I'm male my blood work comes back really good usually too besides my vitamin d I can't have CT scans because I'm allergic to the contrast

 

[MissLeopard83]

So I've been having symptoms of crohns for years I had and colonoscopy and endoscopy and they found inflammation in my colon and stomach but the biopsies came back negative I was just wondering if it was possible to have inflammation without a cause if anyone could help i would be really appreciative
P.s I also have Barrett's esophagus im 24 and I'm male my blood work comes back really good usually too besides my vitamin d I can't have CT scans because I'm allergic to the contrast

Just out of curiosity, did they test your tissue samples for anything besides IBD - such as Celiac? I have Celiac, myself, which causes low Vitamin D in the undiagnosed. When I got rid of gluten sources, I felt much better - especially after the first 2 years.

 

[Legacygb2142]

Thanks for the reply Yeah they checked for a lot of things they said celiac was one of the things they dismissed I did also have shinny parts in my upper small intestine.. but they still don't have an answer for me about what is causing all of this and it's just very frustrating because I can't really live a normal life under the way my symptoms seem to progress and get worse as time is going by

 

[Legacygb2142]

I've also had 3 kidney stones over the last year and in the past 2 years I've lost 100 lb... I've ask numerous times to do pillcam endoscopy but they keep refusing because I can't do CT scan or mre because of the contrast should I switch drs and see if someone else will listen to me?

 

[ronroush7]

Can they do an entrrography? I would keep pushing until you get an answer.

 

[Legacygb2142]

I have tried having one but it turned out that I was allergic to the contrast that I had to ingest made me very sick so I couldn't have it done but the only other option seems to be the pill cam but they keep saying I can't do it because that's last resort method of diagnosing anything but if I can't have a CT or mri then it seems like its the last resort to me but they keep refusing it so I'm basically back to square one I really don't know what to do anymore as its getting worse as the days go by .. I also feel like the drs think I'm lying as well I do like my drs but they don't seem to be listening

 

[MissLeopard83]

I have tried having one but it turned out that I was allergic to the contrast that I had to ingest made me very sick so I couldn't have it done but the only other option seems to be the pill cam but they keep saying I can't do it because that's last resort method of diagnosing anything but if I can't have a CT or mri then it seems like its the last resort to me but they keep refusing it so I'm basically back to square one I really don't know what to do anymore as its getting worse as the days go by .. I also feel like the drs think I'm lying as well I do like my drs but they don't seem to be listening

I think it's time to seek out a different doctor. I hate it when doctors act like patients are drug seeking or a hypochondriac. Mine keeps trying to pass off my symptoms as "simple" IBS. It makes me so frustrated.

 

[ronroush7]

I think it's time to seek out a different doctor. I hate it when doctors act like patients are drug seeking or a hypochondriac. Mine keeps trying to pass off my symptoms as "simple" IBS. It makes me so frustrated.

I am sorry it is so frustrating. I agree about a second opinion.

 

[Legacygb2142]

Thanks for the support guys I think Monday I'm going to seek out a new Dr and will post with updates on the subject I'm just so tired of being sick all the time I can't take it lol

 

[Clash]

There are natural contrasts that can be used for MREs.

I know these contrasts have been discussed on the forum before. I'll see if I can find them for you. I think milk is one of the contrasts used but I know there are others.

Here's one article about it it but using Google you can find more I'm sure

http://www.sciencedirect.com/science/article/pii/S0378603X15000649

 

[Charlotte.]

If it helps: I personally am allergic to Dotarem but not to Multihance and another one (forgot the name). I'm not that familiar with drug allergy but maybe it can be tested which other contrast media could be an option?

Otherwise I would suggest to think about MRI of the small intestine. My Crohn's first was only present there as well and could only be diagnosed by the second MRI when my symptoms were very bad (first one did not show any abnormality).

I also agree on the advice of consulting another doc if you can.

I'm wondering: What did your doctor say about the cause for that inflammation? What did the biopsy results say about the inflammation (didn't they see any inflammation in the biopsy tissue at all or did they find some kind of inflammation but could not determine the type of inflammation)?

In general, if there is inflammation, it should not stay present where it is, the doctor should have an idea how to treat it even it is not some chronic inflammatory kind of inflammation.

Hope you find a doctor that keeps searching the cause or origin of inflammation to offer a treatment to you.

 

[Am11]

I had a MRI 2 days ago and they held back the contrast because I am a diabetic and they didn't want to use it unless necessary. I had my head and spine done so its not exactly the same as yours but they did get a proper look at my spinal cord which they needed. I am in Australia and I know we do things a little different depending on what country you are in. It would be worth asking your Dr if they could do it without contrast. If you are not happy with your Dr change Drs. I suffered unnecessarily for years because I wasn't taken seriously.

 

[Legacygb2142]

.

I'm wondering: What did your doctor say about the cause for that inflammation? What did the biopsy results say about the inflammation (didn't they see any inflammation in the biopsy tissue at all or did they find some kind of inflammation but could not determine the type of inflammation)?

In general, if there is inflammation, it should not stay present where it is, the doctor should have an idea how to treat it even it is not some chronic inflammatory kind of inflammation.

Hope you find a doctor that keeps searching the cause or origin of inflammation to offer a treatment to you.[/QUOTE]

Well basically my Dr has no idea what it's from but they couldn't categorize it as crohns because it was missing one element that a typical crohns patient has like they described it as little bumps where the inflammation is present if I had these so called bumps I'd already be diagnosed and on a treatment plan he said but they came back negative so I'm back to square one. I've been pushing for a pill cam endoscopy with no luck so it's definitely time to see a new gi hopefully one that will listen to me. He was going to try me on a very low dose of prednisone to see if I would reach to it but then he changed his mind after the biopsies came back negative too

 

[Clash]

I wonder if they didn't find granulomas at biopsy? Some pathologists require that granulomas be present to "check the Crohn's box" on the report. Granulomas are a marker for CD. The problem is they are only seen in about 10% of people.

Histologically, Crohn's disease can have transmural lymphoid aggregates, non-necrotizing granulomas, fissuring, or microscopic skip lesions. Although granulomas strongly suggest Crohn's disease as the diagnosis, they are seen in only 10% of patients with Crohn's disease and are sporadically distributed in biopsy specimens.

Source

 

[Legacygb2142]

I wonder if they didn't find granulomas at biopsy? Some pathologists require that granulomas be present to "check the Crohn's box" on the report. Granulomas are a marker for CD. The problem is they are only seen in about 10% of people.



Source

That's exactly what it was called I could not for the life of me remember the name granulomas it's kinda a funky word thanks for that also if I forgot to mention I've had two surgery's on a fistula I had for a number of years

 

[Clash]

If not finding granulomas is the only reason they aren't diagnosing CD then I would keep pushing since it can be difficult to actually get a biopsy that happens to have granulomas present as noted by the fact that the percentage is low for those with CD that have shown granulomas.

 

[Legacygb2142]

If not finding granulomas is the only reason they aren't diagnosing CD then I would keep pushing since it can be difficult to actually get a biopsy that happens to have granulomas present as noted by the fact that the percentage is low for those with CD that have shown granulomas.

Thanks for all the info you've given me I will definitely be pushing to get heard its been way to long of living day by day around the use of a bathroom I'm 24 I want my life back

Thanks again I love this community everyone is great here