questions about symptoms/remission

[HellPatrol]

Hi all. I hope you are doing good. I have not been here a lot lately. I was in the middle of graduation madness.
My daughter had her colonoscopy/endoscopy about 3 weeks ago. Pictures are beautiful. Biopsies.....NEGATIVE for granulomas, villous atrophy, Increased Inflammation, Ulceration, Dysplasia, and Malignancy.
In some parts biopsies show NON-Specific chronic inflammation, with few intramucosal lymphoid aggregates and mild vascular congestion superficial lamina propia.
Her disease is mostly located in in the terminal ileum, which shows occasional reactive Peyer's Patches.
According to the Doctor, She is on remission.

Hi araceli.

I'm new here, so I don't really know active users and their stories yet.
I don't want to just 'step in' into the conversation, but I'm sure you'll understand the need for answers.

I would like to ask you something, if you don't mind. :smile:

I've been struggling with severe symptoms for years. I've managed to get rid of most but the pain (in the terminal ileum region) and fatigue by a drastic change in my habits, and it took me like 10 months to get there. I've had my first biopsies done not too long ago, and the results are way too similar to those you mention:

NON-Specific chronic inflammation (colon),
lymphoid aggregates in the lamina propria(ileum & colon)
mild lymphoplasmocytic infiltrate (colon) (and also duodenum)
mild vascular congestion (colon)

My question is:

Is it possible that these results are just a picture of 'good times'?
I mean, is it normal to see recovery and drastic differences in colonoscopy/biopsy results in flare and remission times?
I'm just afraid that, after having worked really hard to relieve my symptoms, I will go undiagnosed/misdiagnosed because the biopsy results are not screaming any diagnosis.

Thx.:tongue:

 

[araceli]

Hello HellPatrol. Honestly I don't know the answer. I did see the difference in biopsies results when she was diagnosed, when she was in a flare and when she was in remission after 2 years on biologics. I do have another kid with biopsies who show some kind of damage and that did not give us a diagnose. Sorry I can not help. Have you had any other tests done? like the pill cam, or faecal calprotectin?

 

[HellPatrol]

Hi. Thanks for your response.

Not IBD specific tests. My extra intestinal symptoms were SO life consuming that MS and ALS were what was first thought of, moving on to myasthenia gravis (I was on mestinon for like 2 months) and many other types of neuromuscular disease, none of which were evident. All came back negative, time and time again. At the end of the day, it boiled down to diet-sensitive GI symptoms.

Since I had always suffered from GI symptoms, nobody cared to check.

My GI doctor should provide further insight, I HOPE.


:smile:

 

[DJW]

Hi HellPatrol,

I know from my own scopes; everything is clear, even at the microscopic level, when I'min remission .

 

[Muddajo]

Hi hope someone can help, I have been getting awful nausea n retching and heaving for a few weeks now, I'm seeing my consultant tomorrow and am quite worried all I can think it is, is a blockage !