Pathology from Biopsy

They still won't release the doctor's notes, but here is the pathology, in case anyone knows what this might mean?

Esophagus:
NO DIAGNOSTIC ABNORMALITIES

Stomach Antrum:
MILD CHRONIC GASTRIRIS WITH FOCAL ACTIVITY AND RARE H. PYLORI

Duodenum:
NO DIAGNOSTIC ABNORMALITY

Terminal Ileum:
FOCAL ACUTE INFLAMMATION

Colon, designated as right:
MELANOSIS COLI

Colon, designated as left:
FOCAL CRYPTITIS AND MELANOSIS COLI

????

Stomach Antrum:
MILD CHRONIC GASTRIRIS WITH FOCAL ACTIVITY AND RARE H. PYLORI

Click to expand...

- Chronic inflammation of the lining of the stomach but I don't know what the rare part of the H Pylori is.

Terminal Ileum:
FOCAL ACUTE INFLAMMATION

Click to expand...

- Inflammation that is recent and involves a small area of bowel. This may mean there is more than area involved??

Colon, designated as right:
MELANOSIS COLI

Click to expand...

- Melanosis coli is a discolouration/pigmentation of the colon that occurs when herbal laxatives are used. IIRC Miralax is being used? I am not familiar with Miralax here but I imagine that is what is causing it. It does resolve over time once the laxative is stopped.

Colon, designated as left:
FOCAL CRYPTITIS AND MELANOSIS COLI

Click to expand...

- Crypts are a normal tubular like structure within the bowel wall and as the itis suggests there is inflammation present over a (focal) small area affecting the crypts. This feature is more frequently seen lower in the bowel, particularly the rectum, so the left colon would fit this.

HTH!
Dusty. xxx

Wow, Dusty! You should've been a doctor!

Now, Doctor, may I please have a diagnosis!? Or at least your best guess?

H. Pylori is a bacterial infection that causes ulcers. (I happened to see my doc today and that's what she told me). She thinks they'll need to treat it, but might be afraid to do that while treating the other inflammation.

ETA: Oh, and yes, she is taking Miralax and Senna laxatives. Glad to hear that is benign as it sound awful!

Most of what is seen could be attributed to IBD simply because inflammation is involved. Because there is ileal, and stomach involvement that may not be H.Pylori??, it would fit with Crohn's. You would need the gold standard of granuloma's from the biopsies to confirm it though. If these are absent then the doctor would need to be confident in their own knowledge and experience to confirm without them and from the sounds of it your current doctor wouldn't do that.

Did the doctor say why the H.Pylori is rare?

Dusty. xxx

I still haven't talked to her. So I still know nothing. That's why guessing on the internet is so fun! :tongue: NOT! Supposedly she's calling today. Yeah, right...

Hope the doctor phones you so you can get their opinion on the biopsies. Sounds rather complicated, you at least get to see the pathology. I have asked a couple of times to see the pathology report but they keep fobbing me off and repeating that he does have Crohn's. I never said he didn't I am just interested!:yrolleyes:

Why is it when we want the phone to ring it doesn't!
But when your in the middle of dinner it rings with someone trying to sell you some thing.
I hope you hear soon. Thanks for sharing your results. I'm learning a lot. It will make it easier when Grace's time comes for all this.

Farmwife

Welp, she called and get this: after all of this speculation, she does NOT think it is IBD. She said the inflammation looked different than it does in IBD. (Though she did not say how it was different.) She said it could be a precursor to Crohn's or Colitis, but that for now she really doesn't think it is.

Her take on it is that it might be related to an infection she had that is gone now?? Does that sound plausible? I think it is a bit iffy, but I am so relieved it is hard not to just take the non-diagnosis and run!

Thoughts?

My 2 cents- I would get a second opinion.
I know Cincy will read slides for you and I am sure there are other major IBD centers that would also read them for you.
https://improvecarenow.org/

Not really something you want to leave go and either way you want to be sure.

WE got lucky and found a granuloma in DS's cecum.
We still got a second opinion since the drugs to treat are awful and untreated can be as well.

Right now if it is IBD its early and keeping it under control before damage occurs would be best.

IF it's not IBD but something else then there may be a better drug suited for that either way I would want to know.

Good luck.:ghug:

Happy to hear it may not be crohns. A second opinion suggested above may give you more piece of mind. If it is ibd, sounds like you caught it early before damage was done which is good. Did you hear anything about the h pylori mentioned?

my little penguin said:

My 2 cents- I would get a second opinion.
I know Cincy will read slides for you and I am sure there are other major IBD centers that would also read them for you.
https://improvecarenow.org/

Not really something you want to leave go and either way you want to be sure.

WE got lucky and found a granuloma in DS's cecum.
We still got a second opinion since the drugs to treat are awful and untreated can be as well.

Right now if it is IBD its early and keeping it under control before damage occurs would be best.

IF it's not IBD but something else then there may be a better drug suited for that either way I would want to know.

Good luck.:ghug:

Click to expand...

Oh wow -- they do read slides for you at Cincy? That is SO great. She is treating with Sulfasalazine -- is that something that would be suitable for this? I was just surprised how SURE she was that is was NOT IBD.

momoftwinboys said:

Happy to hear it may not be crohns. A second opinion suggested above may give you more piece of mind. If it is ibd, sounds like you caught it early before damage was done which is good. Did you hear anything about the h pylori mentioned?

Click to expand...

Thanks! I know I am glad but I am also confused...I want to believe it, I really do.

So she said the H. Pylori wasn't reactive (or something like that) and so she doesn't treat it. I don't know if that sounds right either?

IBD is hard to prove unless you have a granuloma even ulcers can be "something" else.
Cincy can read your slides. AS can other big places.
sulfa drugs are very mild and as one doc put it when I mentioned Ds was on pentasa- so what else is he on for inflammation?
ASA's really are more maintenance once the inflammation is down. then they can keep up otherwise ..not so much.

Hi there - been quietly reading and since all the experts have weighed in stayed quiet. Just wanted to say hi and also encourage a second opinion. Our GI says early treatment is key to avoiding surgery down the road and getting the kids on the right growth, puberty path etc.

I hope you get the answers you need to stop the wondering and soon.

Good luck!

Thanks SO MUCH to all of you -- really. Because of this I am seriously considering a second opinion and will likely look at Cincinatti for that. I'd love to see this go away forever but I am pretty sure I'll regret it in the end.

I guess I do not understand why she'd be SO SURE it just doesn't look at all like IBD? Like maybe even if she said to me "thereis no damage yet, or we are looking for granulomas..." but there is NOTHING along those lines at all.

Is is unusual for kids to present with inflammation that hasn't caused damage yet?

I would definatly get a second opinion - even if they say the same hopefully they will at the very least be able to explain it better to you! I think for Dr's it's often 'just another day at the office' and they forget that for the patient this may be the most important thing that has happened to them in their lives, also I think they forget we do not have the same knowledge as they do so need to have everything explained properly.
I really hope you get some answers for your ittle one soon xx