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07-03-2014, 10:30 AM   #1
my minnesota boy
 
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My son

Hi Everyone! I've never joined a group like this before - here I go: My Story.

My 19-year old boy (I know, he's really not a "boy" at 19) was diagnosed w/Crohn's in Aug. 2012. He does well with Humira - 2 injections/twice a month. Note: I worry about long term side effects, need to research further. Fortunately, this happened before he started college out of state in Sept 2013.

So far so good until an endoscopy yesterday as a result of serious difficulty swallowing, nearly choking on food, over the last several months. Diagnosis is either: (1) Esophageal Crohn's or (2) Esophagitis, pending biopsy results in a week. The dr. was abrupt and refused to explain differences, and treatment options (as if I wasn't upset enough - to get a crabby dr.). I've done research (which is how I stumbled on this forum) and learned more about esophagitis than Crohn's in the esoph. Seems that best treatment option for esophagitis is an asthma inhaler that is swallowed so as to coat the esoph. But, I don't know about treating the Crohn's -- i.e., why hasn't the Humira prevented the inflammation in his esoph. (in addition to his intestines)?? So, if this is the diagnosis, would we just increase the Humira? He is soooo uncomfortable.

I'm scared about increased risk of esoph. cancer (among other things for my "always little boy").



Susan
07-03-2014, 11:37 AM   #2
Ali29
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Location: Texas

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Welcome to the Forum, hopefully the biopsy results will show what is going on with your son. Sorry to hear you have a crabby Dr. There is so much information on this Forum and other Forum Groups you can join. I haven't taken Humira but I'm sure someone will be along to offer some advice.

Have they ever put him on Prednisone or Entocort for the inflammation?

Good luck!
__________________
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
07-04-2014, 08:38 AM   #3
my little penguin
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Esphagitus is different than eosinophilic esophagitis ( which is what it sounds like the doc was referring to) . The biopsy results will be able to differentiate the two .
The treatment for upper crohn's ( my son has it there as well) is the same as lower crohn's.

If its EoE eliminating the trigger foods usually the top eight food allergens can stop the symptoms . You can also inhaled corticosteroid a as well .

Here is a link to apfed


Does your child have a regular Gi who handles his case ?
Might want to call them
And get a copy of the pathology report from the hospital.

There are more than a few kids with egids ( EoE falls under this umbrella ) and crohn's .
Not sure but I thought Cincinnati center for eosinophilic disorders might treat adults as well.

They could at least recommend someone since it is a tricky thing to get under control.


http://www.apfed.org/drupal/drupal/index.php
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DS - -Crohn's -Stelara -mtx-IVIG
07-04-2014, 08:45 AM   #4
my little penguin
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Other thing to know biologics can stop working
Even humira the body tends to build up antibodies to the drug and this decreases the effectiveness.
Some get two years some get more .
Most take a immunosuppresant to reduce the risk of antibody formation .
They can increase the dose to every week or add an immunosuppressant or both.
You can ask for a antibody test for humira to determine if the levels are still good .

There are also other biologics which can also be used.
Entocort only works on the lower intestines .
07-06-2014, 09:43 AM   #5
my minnesota boy
 
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Dear Penguin: thank you very much for the information. He was on Pred for a short time when he was originally diagnosed in 2012. I didn't think of that - maybe a short burst would provide immediate relief. I appreciate the link to other info and will follow up. My best wishes to you. Susan (I need to change my name).
07-07-2014, 06:56 PM   #6
Farmwife
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Hi and welcome aboard but sorry you have to be here.
My girl had both, egid's and IBD. The GI will be able to hopefully tell the difference between the both.
My five year old is on humira and mtx but she has to have constant rounds of pred to keep her healthy. I hope he feels better soon.

Also if you want your name changed for real let us know and someone, somewhere can make that happen.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
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