Waiting for Results

[DC23]

Heya from New Zealand,

My 10 year old son has just had fistulotomy to address a superficial fistula and for an examination under anaesthesia.

The last 2 months (Summer Holidays in NZ) have been a bit of a roller coaster for him (and us). He first got a perianal abcess, that wasn't visible but palpable for the doctor along with terrible rectal pain and itching. That was followed by some mouth ulcers, a blood blister on his anus, then the fissure, amd then suddenly a (different perianal location) a draining (simple) fistula.

He has been such a trooper all through this. The colorectal surgeon says his findings (during surgery) suggest Crohns (though his rectal mucosa appeared normal) but we are now waiting for test results and I am honestly very confused. I have read so many of your children's stories and most of your babies had so many more awful symptoms than my one.

Over the past year, my son has had primarily perianal itching, sometimes some rectal pain and only somedays (primarily evenings) nausea and sore tummies. He had explosive diarrhoea only a handful of times. He has not lost any weight but also not gained any and is sometimes fatigued. But overall, he is not as unwell as most of your children.

I don't understand. How can he possibly have Crohn's if most of his symptoms are in his anal region? Has anyone's child had similar symptoms and if so what was the diagnosis (Crohns? IBS, Infection).

Many Thanks for reading!
Daisy

 

[my little penguin]

My kiddo was 7 at dx
No diarrhea
Just no weight gain for two years
Then very slowly weight loss over 8 months after that
Mostly constipation
Vomiting once every two weeks ish
Plus rectal prolapse on and off
After 8 months of that
When he was almost 8
He started rectal bleeding (mild) with some mild diarrhea every once in a while .
His symptoms were so mild
Scopes looked visually good abd crohns wasn’t on the radar at all even after scopes until the biopsies came back .
Every kid is different
Every story is different
But once they get the right med combo most leave here abd never look back
Mine is perfectly content in college doing his thing
Good luck

 

[DC23]

My kiddo was 7 at dx
No diarrhea
Just no weight gain for two years
Then very slowly weight loss over 8 months after that
Mostly constipation
Vomiting once every two weeks ish
Plus rectal prolapse on and off
After 8 months of that
When he was almost 8
He started rectal bleeding (mild) with some mild diarrhea every once in a while .
His symptoms were so mild
Scopes looked visually good abd crohns wasn’t on the radar at all even after scopes until the biopsies came back .
Every kid is different
Every story is different
But once they get the right med combo most leave here abd never look back
Mine is perfectly content in college doing his thing
Good luck

Thank you for the information and sharing your child's story.

I suppose Crohns seems such a monster disease, so when I look at my boy I just can't see it. My assumption has also been that it's primarily located in other locations, so his perianal presentation just throws me.

I am really happy for your child is doing fine, and it's giving me hope that we can manage even if it was a Crohns diagnosis. Thanks heaps!

 

[Pangolin]

Crohn's can have subtle, nonspecific symptoms even when a kid is actually really sick. It's not too uncommon for Crohn's to show up mostly with downstream effects like your son has.

 

[DC23]

Crohn's can have subtle, nonspecific symptoms even when a kid is actually really sick. It's not too uncommon for Crohn's to show up mostly with downstream effects like your son has.

Thank you for your thoughts on this. Yes, I am starting to understand that Crohns comes in many disguises. What an awful journey for the kiddos to go on.