How did your Biopsy Diagnosis relate to the reality of the severity of your symptoms?

[Pilgrim]

I was reading my daughters biopsy report. I was wondering how the severity of your disease symptoms relate to what severity you were marked at on your report ie: mild, moderate, severe.

Yes, I'm trying to play fortune teller with the future.

 

[Clash]

I don't have the report in front of me but my son's GI said his inflammation and disease were severe. That would be to say the active disease at that time. The biopsy only confirmed CD.

Also, the GI said and studies back up the fact that children usually have disease that follows a more aggressive progression. Hence, the reason a lot of kiddos are started on remicade or another biologic soon after dx, since studies have shown that remicade can affect this disease progression if given early in disease course and allow less chance for surgery or progression to a fistulizing state.

Since, people with CD can move through phases of mild, moderate and severe as disease progresses or with induction of or failure of meds it is hard to pin point the track anyone's CD will take. You can be diagnosed mild and then have a severe flare or progress to a stricturing form or start of severe and have meds control your flares. Also, you must allow for the cyclical nature of the disease.

I'm going to tag Dusty and my little penguin as they can give you more detailed information without all the rambling my post probably does.

 

[Pilgrim]

That helped, especially relating to the choice of meds given to a child or younger person. Thank you.

Her report said moderate to severe. In my head for the past week or so, I heard "mild". Not sure how that happened.

 

[DustyKat]

Clash is right in what she has said. And yes, unfortunately children tend to a more severe presentation that can be challenging to treat.

The main thing to remember with any test whether it be scopes, bloods etc is that they are snapshot in time only. As a result change can occur at any time after that. Also, symptoms do not necessarily correlate to severity. You can have someone with severe disease and very few objective symptoms and vice versa. Therefore you need to look at both objective and clinical markers. If they marry up then that is the ideal but they don’t always do that and you need to go with whatever is giving you the most information.

The other thing to remember is that biopsies will give you a rating on where your disease is at on that day but it won’t give you a phenotype (the type of Crohn’s you have).
As an example: My son was diagnosed with mild to very mild Crohn’s on the 1st December 2010. On the 17th December he was admitted to hospital with a microperforation and abscess. He went downhill from there and needed surgery the following April. Not what one would expect with the scope report he received. BUT he has fistulising Crohn’s and as soon as he developed that complication he jumped from mild to severe in one fell swoop, all it takes is one deep ulcer and clearly that is what he had lurking there.

Dusty. xxx

 

[Pilgrim]

I think the plan for her is to do a small bowel follow through next week. Still waiting for a phone call. So far all I have is the report from her upper endo (it was good) and her colonoscopy (not good) so it sounds like we need to know where the rest of the Crohn's is if it's anywhere else outside the large bowel and phenotype.

This is the first I've read of phenotype, and I wonder how it's determined. Did they determine that after your son's hospital emergency? Is there any way to determine it ahead of time?

Thanks for your help. I'm starting to get a more realistic picture of Crohn's.

 

[Momtotwo]

When I asked our second opinion dr to classify my son's Crohn's (expecting to hear mild as his symptoms were mild, MRE normal, etc.), he said to see how he responds to treatment and he will know more about how to classify. That started to give me a realistic picture, Pilgrim.

 

[Momtotwo]

DustyKat- I didn't realize your son went through that. That must have been a shock to all of you. Was the deep ulcer noted on the colonscopy? Or was it in an area that could not be seen on colonoscopy?

 

[DustyKat]

:eek2: I am so, so sorry I haven’t been back to this sooner Momtotwo.

When his scope was done the GI went through the terminal ileum and saw ulcers there but because the area was quite inflamed he did not want to push through it and risk complications. Therefore he had a CTE the following day to see just how much of the TI was affected.

As to the offending ulcer itself, I don’t know that its depth would be apparent on sight. So either it was one of the ulcers he saw and couldn’t tell or it was further up where he didn’t want to push through. Having said that, when he had his scan there was no evidence of perforation or complication at that point, it all happened very quickly after diagnosis so I think it was more coincidental than anything. Bearing in mind that he was diagnosed on very, very few and mild symptoms and very quickly as well.

Dusty. xxx

 

[Catherine]

My daughter dx with mild Crohn's but inflammation was already chronic. They were surprise how sick was she at dx eg severe anemia and weight loss.

Her dx was reclassified as severe within 8 months of dx when she developed a fistula while appearing to be clinic remission.

 

[Pilgrim]

The SBFT looked clear for the small bowel. So as far as we know her disease activity is located in her large intestine only. We are waiting for a month to start her on Azathioprine because a vaccine she had gotten has to be through her system.

She seems to be improving on EEN, but it is hard to be certain because even back in June when her ESR was 65 she seemed tired, but not too different from what she is now. I guess there is no way to know when something terrible is happening in there until the emergency happens.