Waiting for results - your experience

[DC23]

Heya from New Zealand,

We are currently waiting for my 10 year old son's results from a mass of tests, including bloods, Stool, Biopsies.

It's been a week and a half since he had emergency surgery for perianal fistula. They did an EUA and took biopsies from his rectum. It's been a pretty anxious wait for us so far and his symptoms are already returning.

What has been your experience of the wait time between battery of tests and getting results?

Daisy

 

[my little penguin]

Why didn’t they do a full scope ?
Top and bottom scope is needed plus imaging (MRE ). They need to know the full extent of the disease not just the rectum .
It takes about a week.
If your child has Crohn’s disease they will need an upper and lower endoscopy to see the extent of the damage /inflammation, a pill cam and an MRE . These are standard tests plus they need to see a pediatric gastroenterologist.
Not a surgeon.

 

[DC23]

Why didn’t they do a full scope ?
Top and bottom scope is needed plus imaging (MRE ). They need to know the full extent of the disease not just the rectum .
It takes about a week.
If your child has Crohn’s disease they will need an upper and lower endoscopy to see the extent of the damage /inflammation, a pill cam and an MRE . These are standard tests plus they need to see a pediatric gastroenterologist.
Not a surgeon.

Hi MLP,

From what I understand they will do these things if any of his tests show abnormalities. There is only one paediatric Gastroenterologist in the whole of the South Island (of New Zealand) which has a population of around 1 milion, so I assume they want to keep the load low?

My son's surgery was classed as emergency, which is why they operated on him so quickly. But we live in place with only a small hospital and so the surgeons input is all we have for now.

Apparently Fecal Calprotectin test takes up to 3 weeks to come back, so I am assuming that they want to wait until all results are back from the last tests before they tell us anything. That's something the paediatrician said.

It's not ideal and I hope we will get some answers soon.

 

[my little penguin]

Yikes three weeks is a long time for fecal cal .
Even that won’t tell if it’s crohns -just inflammation present.
Only one GI is rough as well -surgeons are not Gi specialist so that is a problem .
Blood markers (sed rate ,csr, ,cbc,cmp etc ) can help point to testing being needed as well as fecal cal, but with only one doctor the odds of only the sickest of the sick getting seen are high .
Can you travel else where ?
Fear is the wait will be very long with only one doc and things could go south when that can be prevented with the right tests /meds .

 

[DC23]

Yikes three weeks is a long time for fecal cal .
Even that won’t tell if it’s crohns -just inflammation present.
Only one GI is rough as well -surgeons are not Gi specialist so that is a problem .
Blood markers (sed rate ,csr, ,cbc,cmp etc ) can help point to testing being needed as well as fecal cal, but with only one doctor the odds of only the sickest of the sick getting seen are high .
Can you travel else where ?
Fear is the wait will be very long with only one doc and things could go south when that can be prevented with the right tests /meds .

For now we are in the system and apparently just need to sit tight and wait. I have already tried to chase them up, but that's all I got.
We will see his normal Doctor tomorrow because he has gotten worse again. Hopefully he can fast track some more info before it escalated into surgery again.
I mean I love that we don't have to pay for healthcare but New Zealand is a very small country and specialists are lacking, so we may have to tackle our savings and travel in the future for ds to see who he needs to see.