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Crohn's Disease Forum » Parents of Kids with IBD » Are you sure he has it? ARGH!!


04-12-2017, 02:51 PM   #1
sgholmes2002
 
Join Date: Feb 2017
Location: Frisco, Texas
Are you sure he has it? ARGH!!

Need to vent..... ARGH!! Apparently the mom's at my son's high school have been talking to each other and have decided that they are not sure my son has Crohn's. Really???

I keep getting asked over and over and over again by different women (moms of my son's friends), "Are you sure your son has Crohn's?" Do I really need to defend my son's diagnosis with you ladies. Apparently, because my son has lack of pain, the women do not believe he has Crohn's. Apparently, they have a friend who has pain with her Crohn's so my son must not have it.

I guess I should have taken pictures of the bloody diarrhea he had 3 times a day. Or, maybe I should take the images from his colonoscopy and share the many bloody ulcers he suffered from. Or, maybe I should share the biopsy results that confirmed he had Crohn's. ARGH! I can understand not being informed that Crohn's is different for every person, but to have the nerve to ask and not by just one person. Apparently, the only way to truly have Crohn's according to these ladies is to experience intense pain. I am sorry that my son lacks the pain indicators in his gut. The doctors have no explanation for it. I am just so mad that they had to get together and discuss my son and then to think that I am lying about it.

Sorry, no one to vent to who would understand but you guys.
04-12-2017, 05:43 PM   #2
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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Wow--that is really maddening. I suppose eventually it would be helpful to educate them about Crohn's, but I'm not sure how I would go about that...

It's interesting--my daughter did suffer from intense pain just before her diagnosis, but she had been exhibiting Crohn's symptoms for several years before her diagnosis, and most of that time she didn't have abdominal pain. So it's definitely not a symptom that everyone with Crohn's exhibits all the time.

Another irritating response from people who find out about my daughter's Crohn's is "Oh, Crohn's isn't that bad--my (mom, coworker, neighbor) has it, and it doesn't slow them down at all."

I have to say, though, that most people who find out about E's Crohn's are very understanding, especially once they learn more about it. I hope you find more people like that!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
04-12-2017, 06:17 PM   #3
Maya142
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VERY frustrating . Not everyone presents the same way! We have kids on here who have required surgery but weren't in severe pain! It really varies.

It's none of their business anyway. If they ask again I'd ask them when they became board certified pediatric gastroenterologists!

Sending hugs .
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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
04-12-2017, 06:44 PM   #4
sabrina123
 
Join Date: Aug 2016
Sending hugs to you. I hear you on this one.

I know many parents questioned that we were/are coddling our kids - not knowing they have real chronic illnesses. Or implication that we parenting wrong or I wasn't involved enough, because we and our kids didn't always do all the 'normal events'. (they didn't know that all those misses were illnesses, and many many doctor appointments). I don't disclose many details for my kids privacy.

Than the schools. uuugh. One is still a big issue - I know the teachers think it's just me thinking the kids have illness, , so DH deals with them. The other at least the head of the school was transparent and said the challenge is that your child looks so healthy (she is a great athlete) and teachers make mistakes, because she thinks she looks well (even when she is having a flare or was on a liquid diet). Of course, they were never there the 300+ nights when she was sick, in pain, not growing.

I don't have advice for you. It has taught me that no one ever really knows the struggles any human being goes through and real friends are a blessing. I'm religious so I when I hear a child is sick, I now always pray for both the child with the illness as well as a special prayer for the parents.

PS - I have also used the example of Kathleen Baker - the silver medalist swimmer with Crohn's who had some rough spells as well as times she does amazing.
04-12-2017, 06:58 PM   #5
my little penguin
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Join Date: Apr 2012

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See Ds has constipation as part of Crohns not diarrhea
So we always get comments from everyone including well meaning docs

I tend to exclaim" wow I didn't realize you finished medical school with specialized training in pediatric GI... you could have saved me so much money and insurance hassles ...
Obviously 🙄 you know way more than my child's treating pediatric GI who actually tested my child and knows his particular history after all those years of training ...which apparently weren't needed ...
I just needed to checked with Sally xyz who has Crohns to know what you now...
So can you share your child medical history Tao I can guess and tell you what they don't have.. "


Never said the whole thing
But shorter variations tend to
Get folks to stop talking
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DS - -Crohn's -Stelara -mtx-IVIG
04-13-2017, 06:09 AM   #6
sgholmes2002
 
Join Date: Feb 2017
Location: Frisco, Texas
Thanks for the support. Venting and reading your comments helps!!
04-13-2017, 08:03 AM   #7
polly13
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Location: Tipperary, Ireland

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Oh I feel your pain, just put it to the back of your mind along with all the comments about diet and other peoples need to tell you about their minor bowel issues as if they understand crohns.

This just demonstrates a total lack of understanding of a very complicated illness in children, and an absolute need of some people to have an opinion of everything even though they havnt a clue what they are talking about aaaaaaaaaahhh!
04-13-2017, 12:13 PM   #8
Jmrogers4
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Because just from this forum every kid has the same symptoms and presentation
A lot of these kids also have extremely high pain tolerance, you know when you have a certain level of pain for a long time and you grow up with it, it's just normal. Makes it hard to judge when things are really wrong. I know my own kiddo has broken his wrist and his foot and managed to go all day long before saying "you know my wrist/foot is really bothering me" We get to doctor and he classifies his pain as a 3.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-13-2017, 02:44 PM   #9
Lisa
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Location: New York

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Because just from this forum every kid has the same symptoms and presentation
A lot of these kids also have extremely high pain tolerance, you know when you have a certain level of pain for a long time and you grow up with it, it's just normal. Makes it hard to judge when things are really wrong. I know my own kiddo has broken his wrist and his foot and managed to go all day long before saying "you know my wrist/foot is really bothering me" We get to doctor and he classifies his pain as a 3.
Having been a child with Crohn's/Colitis, and now being in my 40's...I can attest to the high pain tolerance! You forget what 'normal' is like, so when you do have pain it isn't felt at the same intensity......

My old GI doctor (when I was in my early 20's) used to comment on it....usually when I'd go in to see him finally, it was a straight admit to the hospital for treatment, and I wouldn't show outwardly how bad I really was feeling. I still do that to a certain extent, but I've been trying to not suck it up as much...such as with my shingles pain - got decent drugs for that yesterday!!!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
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