Crohn's Disease Forum » Parents of Kids with IBD » Well, we are back after almost 4 years


03-29-2019, 06:28 AM   #1
JenniferJuniper
 
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Location: Pittsburgh, Pennsylvania

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Well, we are back after almost 4 years

I just looked back through my forum and realized that we have had almost 4 great years of symptom-free Crohn's. My son is almost 18 and was diagnosed when he was 12.

Surgery to removed stricture at age 13 and he doubled his body weight in 1 year and has been doing great ever since. No symptoms, thriving, great labs, great scopes (last scope dr reported there was 0 signs of disease).

He has been on Remicade every 6 weeks for 5 years.

I think he is experiencing his first flare this week. He is on day 3 of diarrhea and stomach pain and I'm just waiting for the nurse's line to open up. He woke up 3 times in the middle of the night and was so upset this morning because he knows that's bad.

Is there anything you know of to ease the stomach pain? Has anyone else ever suddenly flared after being symptom free for 4 years?
__________________
14 yr old son dx Crohn's 7/14

Severe inflam. in small intestine
Delayed growth & puberty, malnourished, anemic
Remicade & Methotrexate 8/14
Vit D, folic acid, supplemental EN
38 cm of distal ilium removed 7/15
03-29-2019, 06:55 AM   #2
Jo-mom
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Hi Jennifer -- I'm relatively new to all this and I don't have much to offer. I know how hard it is to watch your kids struggle. As you know, there are many parents on this forum and I'm sure they will have more to offer in way of experiences. I hope this is something isolated for your son, like a virus perhaps. Let us know how he is doing.
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Mom of L (20)

Diagnosed at 19 with moderate to severe crohn's (July 2018) - likely had it since early teens asympomatically -

Enteropathic arthritis - diagnosed June 2018 - showed symptoms mid teens.

Entocort August 2018 to January 2018
Remicade - Sept 2018 to May 2019 -5 mg/kg every 4 weeks

May 2019 to present 10 mg/kg every 4 weeks
03-29-2019, 07:08 AM   #3
JenniferJuniper
 
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I keep googling bug vs flare - the only thing I can come up with is that a flare is likely to get worse with time no better? So, that's why I'm thinking flare. I'm praying its a bug though!! I want this to be a false alarm!
03-29-2019, 10:08 AM   #4
my little penguin
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Join Date: Apr 2012

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Sorry your back
But typically they order
Stool samples ova /parasites
C diff
And fecal cal plus blood work
If it gets too frequent for diarrhea then inpatient for scopes quickly and iv fluids
Depending on results ...
We had mini flares 1-3 days long
And other mystery flares that last 1-2 weeks that no one knows why

Good luck
Hope it stops soon
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DS - -Crohn's -Stelara -mtx
03-29-2019, 10:54 AM   #5
crohnsinct
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Location: California

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Don't drive yourself crazy trying to figure out if this is a bug or a flare. Crohn's symptoms are similar to so many other things it is virtually impossible. Only time and testing will tell.

Yes, we have had mini flares. Hit them with a short course of steroids and my girls were back on track. If they didn't get back on track we adjusted dosing and interval of Remicade.

Poor kid. Poor mama. Keep us posted!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
03-29-2019, 01:19 PM   #6
JenniferJuniper
 
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Ok just heard back from doc, ordering stool testing and crossing my fingers
03-29-2019, 01:34 PM   #7
crohnsinct
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Crossing right along with you!

Are they doing fecal cal also? Not that it will matter much because diff and viruses will also raise fecal cal.
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Crohn's Disease Forum » Parents of Kids with IBD » Well, we are back after almost 4 years
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