Crohn's progression

[my little penguin]

The most commonly used clinical parameters for predicting a more serious course of CD are age of disease onset less than 40 years of age, perianal disease or the need for steroids during the first flare.[56 57] If a patient carries two out of the three parameters the positive predictive value for disabling CD in the future is approximately 90%. A history of smoking is another risk factor for complicated CD[58 59] and a faster rate of progression from diagnosis to first stricture.[60] Patients with active colonic or ileocolonic CD with deep and extensive mucosal ulcerations have a higher risk of subsequent surgical intervention.[61] Location of inflammation to the small bowel, rather than the colon, has also been identified as predictive of a patient's progression to stricturing disease and a higher rate of surgery.[60] The commonly used classification systems, in particular the Montreal classification,[45] only identify a stricture after it has become clinically apparent, and therefore using this classification to perform risk factor studies has substantial limitations

From:
http://www.medscape.com/viewarticle/805774_4


Which is why many of us use the scary drugs...,..

 

[DustyKat]

And why my two are in the high risk group. (((sigh)))

Age of onset + severity of disease + surgical intervention.

It is why we use the scary drugs and why at times others with the disease don't understand it.

Thanks for posting mlp.

Dusty. xxx

 

[my little penguin]

DS has three
Perianal + young age+ steriod use first

Sigh ...

 

[Farmwife]

:confused2:Grace has two...

Young age + steroid during first flare

 

[Clash]

Ok quick question, I've asked it before or maybe read it before but I'm still a little muddled about it all. C has an anal skin tag I remember V's mom saying that mean his CD had at one time been active down there. Is that right? Does a skin tag=rectal inflammation? How does that differ from perianal?

Anyway, less than 40, steroids required for first flare and possibly this bit:

Location of inflammation to the small bowel, rather than the colon, has also been identified as predictive of a patient's progression to stricturing disease and a higher rate of surgery.

puts us in the club.

It is why we use the scary drugs and why at times others with the disease don't understand it.

In agreement, Dusty, with Hugs and support! And as you say, may it be "Onwards and Upwards" for our kids!

 

[Farmwife]

UMMM good question Clash. Grace has a anal skin tag too.
Just to be clear I hope the answer is NO.

 

[DustyKat]

We have no experience with skin tags here but I am happy to take a stab at the question and am happy to stand corrected if I screw it up!

Skin tags are normally associated with perianal disease as they are a manifestation of inflammation around the anus. The lower down the disease is in the bowel the more likely you are to have perianal presentation.

However...skin tags can be like many of the extra intestinal manifestations of IBD and precede an intestinal diagnosis by months or years. So there may have been inflammation there at one point that was not overly bothersome (skin tags called elephant ears generally aren't painful), cleared up and has not presented there again.

Dusty.

 

[my little penguin]

Perianal disease is different than skin tags
I posted an article on the manifestations of perianal disease
I will find
Most do not consider skin tags or hemmorroids as perianal
Disease .

 

[my little penguin]

http://www.wjgnet.com/1007-9327/pdf/v17/i15/1939.pdf

The ones they are concerned with are inflammation, ulcers, fistulas, abscesses

but not skin tags that happen once-KWIM.

-- basically what dusty said-

 

[crohnsinct]

uuummm yeah...which is basically all of us here huh?

Makes me feel better about scary drugs tho. Thanks MLP!

 

[Twiggy930]

DS has three
Perianal + young age+ steriod use first

Sigh ...

Ditto...

:voodoo::voodoo::voodoo::voodoo::voodoo:

 

[Tesscorm]

Thanks MLP... silly question... wouldn't all 'first' flares be treated with steroids? You have to get the inflammation under control??? What would be the alternative? No treatment?

I realize many, including S used EEN but only because it was offered, otherwise, we also would have used steroids.

 

[DustyKat]

I hope you don't mind me jumping in here mlp. :redface:

If you are diagnosed with mild Crohn's that has no evidence of complicating disease you may be treated for symptoms only. So say your symptom was diarrhoea the only initial treatment may be an anti-diarrhoeal and some diet modification and that is it. Or the GI may add to that an antibiotic and/or one of the Aminosalicylates.

ETA - bear in mind that the age of onset, when it comes to children/teens, is generally a good indicator of severity of disease so most if not all the kids here will immediately fit the moderate-severe category.

Dusty. xxx

 

[Crohn's Mom]

uh....Gab's screwed according to this...
just saying

Thanks for posting MLP !

 

[ChampsMom]

Tess thanks for asking I was wondering the same thing - I do not recall being offered EEN when he was first diagnosed, but then again I do not recall much of that period.

 

[polly13]

Oh god I have been in denial ( well not really), we have all three onset age 2 with perianal and needing steroids first flare- and this is why the decision to use the heavy duty drugs isn't really a decision just a form of previously undefined torture for us parents

 

[Jmrogers4]

Young age and steriods first flare, according to GI at that point need to get inflammation under control fast.
But then hubby would fall into this category as well, 23 at diagnosis, steriods, periannel (and he smoked from 17 to diagnosis)

 

[Dexky]

Uhmmmm, yeah!

 

[Sascot]

:yfrown: Well that was just depressing. Two out of three here since they used the EN instead of steroids!

 

[CarolinAlaska]

I like to think that Jaedyn's isn't so bad. She wasn't diagnosed when her symptoms first started (toddlerhood) and so she didn't have steroids for 12 years... No perianal disease... When diagnosed they prescribed pred but agreed to EEN instead... I keep telling myself that since she made it 12 years without major complications, she'll be okay and won't progress to strictures or fistulas or abscesses, etc. Of course no one ever really knows what the future holds, but I like to look on the bright side... that doesn't stop me from using the 6MP though...

 

[Mehita]

I'm not sure what to think of this. I think DS might be on the lucky side? Under 40, yes. Perianal, no. Pred for first flare, don't think so? I'm not sure if his first flare was really a Crohn's flare or his little body finally saying "no more gluten". We got both the Celiac and Crohn's dx at the same time and after going gluten free, he was good for almost three years before needing pred. :thumleft:

Then again, not all 13 year olds can say they've had 10 inches of their small intestine removed already. :thumbdown:

 

[Catherine]

Dx at 16, pred with first flare and small bowel disease.

 

[CrohnsKidMom]

We have 2 out of 3. My 8 yr old son was dx'd in March and started Prednisone on Apr 1. He has an anal fissure and skin tag, but our GI said there is no other evidence of perianal disease. He has always suffered from constipation (we replaced our toilets with super-duper flush ones on his account!), and that apparently caused the fissure and resulting skin tag, not the Crohn's directly. His disease is located in the small intestine-jejunum.

We were given the choice of Prednisone or EEN upon dx. Our GI was highly recommending the EEN, but I don't think any of us were ready to handle it emotionally-maybe if my son was younger, or older... Our GI did say that EEN is more common in Canada and Europe for first treatment, and steroids the more common choice in the US.

(Oh dear, I just read the first post again... maybe we're 3 out of 3!!)