Crohn's Disease Forum » Your Story » Success Stories » My son may have CD

03-04-2018, 10:22 PM   #1
Join Date: Mar 2018
Location: Pittsgrove, New Jersey
My son may have CD

My 20 year old son recently had a CT scan and was found to appaerently have CD, or difuse thickening of the ileum. He went in with what we suspected as either appenicitis or a hernia. I am scared to death. What confuses me is he has NO other symptoms except a lingering pain at his appendix area. When he was very young 2 or 3 years old, he had rectal prolapse a couple times and I wonder if what he has could be from that. As a 20 year old in very good health, is it at all possible this could be anything else? Is it at all possible to go your whole life with no flare-ups? I am sick to my stomach and scared to death for him. He has an appintment with a gastro in 2 weeks. I've been through heart surgery and I've never been so scared as I am for him. Any suggestions please?
03-04-2018, 10:26 PM   #2
my little penguin
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Join Date: Apr 2012

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Sorry your here
There is a parents of kids with ibd
A lot of the “kids” are young adults
As parents we get it
He will probably get a colonoscopy to confirm Crohns
So I would wait for that first
Especially the biopsy results

Some kiddos have no symptoms
Others have a lot
Ds was dx at age 7 -went to GI due to rectal prolapse
Which is unheard of in 7 years olds
DS - -Crohn's -Stelara -mtx
03-05-2018, 12:18 AM   #3
my little penguin
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Join Date: Apr 2012

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03-05-2018, 10:06 AM   #4
Jmrogers4's Avatar
Join Date: Jun 2012
Location: Boise, Idaho

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It's best to wait for results but yes symptoms can be mild, you also could have caught it fairly early, they say generally onset/diagnosis is late teen - mid 20 so he may have been fine until now. My husband was diagnosed at 25, no issues prior until he ended up in the hospital with an abscess. Our son was diagnosed at 10 symptoms were, lack of growth and stomach pains in the AM, the lack of growth continued until we were able to get him on the right medicine for him.
Symptoms can be all over the board and sometimes it's not until we look back and connect dots that we get the whole picture.
I know it's difficult to wait until test results and I highly recommend not googling too much as what's out there a lot of times is people at a bad point or worst case as those that have it under control are out there living life and not thinking about Crohn's.
My son is a freshman in college and barely gives a passing thought to it anymore other than getting an infusion every 6 weeks, it's done in his dorm and he studies, watches videos/movies during the infusion (usually less than 2 hours from the time his nurse shows up).
Good luck and keep us updated

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-05-2018, 12:47 PM   #5
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Maya142's Avatar
Hi and welcome!
My daughter was diagnosed at 16. She didn't have many symptoms - abdominal pain, some weight loss and occasional constipation. That's it. None of the "typical" Crohn's symptoms like diarrhea and bleeding.

I honestly thought we were ruling OUT Crohn's with a scope. Before that, she had ultrasounds to check for appendicitis because her pain was in that area too.

But she is 21 now and has spent some time in remission. Her Crohn's has been treated aggressively with biologics, so she is lucky enough to have escaped complications like strictures, abscesses and fistulae. Right now she's flaring but she's just started a new medication and I expect she will be back to normal in a month or two.

The first step is scopes. I know it's hard, but try to keep calm through them. The more scared you are, the more scared your son will be. Scopes are not as awful as they sound - the prep day is no fun, but the actual procedure is just a nap.

Hang in there and be sure to check out the parents' forum. There are lot of us with kids in college who still hang out there!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
03-05-2018, 01:37 PM   #6
Senior Member
Join Date: Mar 2012
Location: California

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Hi there and welcome!

My older daughter was dx'd during a massive and very dramatic flare but the docs think she had the disease for two years prior and it was just silently doing it's damage.

My younger daughter had nothing but stomach pain on and off for three years. She was growing fine. When she stopped gaining weight at age 10, they referred her to the GI (due to having a sibling with the disease). We also were testing her to rule out disease. She has mild disease.

A large percentage of people dx'd with IBD are dx'd in their early 20's.

It could be IBD but it could also be many other things. Try not to get ahead of yourself. One thing you could ask a primary care doc for is an order for a fecal calprotectin test. An abnormal reading on this test does not necessarily mean IBD (other causes include high NSAID use, colon cancer, sometimes celiac, infection etc) but it will help to have this reading and may move the doc to ordering upper and lower endoscopy.

Believe it or not my girls don'y mind scopes. They say it is like a day and a half at the spa. You clean out your insides, get to watch movies all day, take the best nap of your life and get a yummy lunch afterward.

I was never scared of Crohn's but I came at it from a very different perspective as my daughter was very, very ill and in the ICU (due to untreated and un diagnosed disease), so when they told me it was Crohn's I was relieved that they knew the cause and they knew how to treat it. 6 years and she has had a VERY full and normal life. She is in her freshman year of college clear across the country and fighting a flare but the flare has not stopped her from doing anything. She swims on the school's club swim team, is going to the beach for spring break, got a 3.8 GPA, and has spent all my money Very typical college freshman!

As jmrogers said, be careful of reading too much. If it does come to be IBD we are here for you to help you digest the information etc. It could be scary entering into an unknown world but after the first year it becomes old hat.

Good luck at the GI appointment and please keep us posted.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

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
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
03-05-2018, 05:58 PM   #7
Join Date: Mar 2018
Location: Pittsgrove, New Jersey
Thanks everyone for the encouragement. It helps to know that not just me, but my son is not alone. What a great forum.

Crohn's Disease Forum » Your Story » Success Stories » My son may have CD
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