Crohn's of the stomach? Gastric Outlet Obstruction?

[Kiki D.]

Our daughter Rachel (10) who had been healthy with no signs of illness except vomiting one time per month during the night was hospitalized in mid January at Minneapolis Children's and we didn't go home for three months. Due to severe surgical complications, after removing a large bezour in her stomach (from a severe gastric obstruction) she was not diagnosed with Crohn's for almost two months. She was just two sick and unstable to undergo a colonoscopy. She has been diagnosed with a rare form of Crohn's, of the stomach, she has no other symptoms of Crohn's and almost no evidence of Crohn's in her intestines...our wonderful GI doctor only knows of one other case in the US but I thought maybe if I reached out on I would find others. She is getting stronger at home but has a nj tube for primarily all her nutrition because her stomach only empties full liquids at 11%. Rachel had her fourth Remi treatment on Thursday with an anaphylactic response (oxygen dropping, lips swollen)...plan is to begin Humira in two weeks when she has her next endoscopy and dilation so they can monitor her. We so hope that we are able to find other people that have had Rachel's situation as our doctor is just doing his best guess since Rachel's situation is so rare. Thanks so much!

 

[DJW]

Hi Kiki and welcome. I'm sorry to hear your daughter has been so sick. There is a great group of parent here.
Sending you and your daughter my support and well wishes.

 

[CrohnsKidMom]

Welcome, Kiki, so sorry for all you are going through. My son's situation is different, with CD mainly in the small intestine, but I hope someone comes along that can closely relate to your daughter's situation. Take care. I hope you see some improvement with Humira.

 

[Farmwife]

Hi and welcome.
Three months in the hospital, I can't even image. I'm glad she's home and I hope she'll improve with humira. My five year old is on it and methotrexate. I'm starting to see some improvement but it's been a long road to get her.

My Grace has multiple areas affected including the stomach and like your girl has slow drainage. She's hasn't had and testing on her stomach as she's had so many health issues but if she keeps having slow mobility she'll be tested for it.
My Grace now has a g-tube for formula feeds. She can't tolerate a lot of food and will get nausea quickly when flaring. Her n-g tube was causing to many issues in her sinuses.

I'll tag in kimmidwife and SupportiveMom. Their children have issues with the stomach.
mlp does your son have issues with the stomach?

Please ask as many question as you like.

 

[DustyKat]

Hi Kiki D and :welcome:

I am so very sorry to hear about your daughter and all you have both been you. :ghug:

As Farmwife has said, there are other parent’s here that have children with stomach issues. You may also like to look this thread:

Crohn's and Gastroparesis

…it is a support group thread started by kimmidwife.

I see you mentioned that there was almost no intestinal evidence of Crohn’s, what other area/s are involved?

I so hope the Humira works well and your lass is soon feeling much better, bless her. :heart: Good luck and welcome aboard!

Dusty. xxx

 

[griffin123]

Thank you ladies for trying to help this mom out, she posted in a group on face book but I referred her here as I believe she will get more advice and support for her daughter from this group. I love all the advice and help I get from here and wanted to share that with her too.

 

[my little penguin]

DS had evidence of inflammation at dx in his stomach duodendum caecum terminal ileum and rectum.
His motility is slow - when he flares for crohn's his constipation gets worse and he get retal prolapse and temnisus .
Having crohn's in only the stomach is rare .
Did they do a pillcam or mre of her small bowel?

Has her case been reviewed by the top there ped Gi hospitals - cchmc chop or Bch ?

DS also had an allergic reaction to remicade and now is on humira .
Ask about adding lidocaine to the humira syringe .
This make the shots less painful .
Rheumo does this regularly - our gi was not aware of it

Good luck

 

[Mehita]

I have no advice, Kiki, but just wanted to say hello from a fellow St. Paulite. I would second the advice to get a second opinion at one of the top ped gastro hospitals, simply because her case is rare.

 

[SupportiveMom]

First of all - for the makers of Taptalk, I hate I can't see when I am tagged in a post. I am so sorry it took me this long to see this tag!

Kiki, anyphlaxis reaction to Remicade is rare but does happen. My daughter had it 5 months into Remicade treatment. Further than just the antibody issue, it is scary to see someone react like that. Luckily for me it was not the 1st time she had this reaction to a medication, the last time was penicillin.

Humira is a great alternative to Remicade and works for many. The issues surrounding antibodies & potential anyphlaxis are very rare because of the differences in the drug. I hope you are able to find relief with it. Speak to your doctor about combination therapy to help keep those potential antibodies at bay, and therefore reducing the chance of anyphlaxis.

My daughter does not have crohn's in the stomach that they have determined, but in the esophagus. Wish I could advise more specifically on the stomach for you. Second (& 3rd if necessary) may be in order.

 

[Momtotwo]

Kiki D- If travel to a major chidren's hospital is not possible at this time, it might be worth reaching out to some of the well known ped IBD specialists at CHOP or BCH or Cincinnati and discussing your daughter's medical issues informally. It sounds like your daughter's presentation is not typical according to your local dr. He might be able to get advice from an IBD specialist as a starting point. Surprisingly, I've had success with that in the past. My mother was being worked up for Carcinoid Syndrome many years ago. A NYC GI known to be one of the world experts in Carcinoid responded to my emails and actually suggested some tests for my mother's GI dr to run.

 

[littlemissh]

Hi,

I have GD Crohn's and gastroparesis and a long term NJ, so she is not alone.