Crohn's Disease Forum » Parents of Kids with IBD » Waiting for GI appointment

07-12-2018, 11:03 PM   #31
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Maya142's Avatar
Sometimes you HAVE to be that mom to get things moving. Glad you got the appt. moved up. Good luck!
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
07-17-2018, 10:09 PM   #32
Join Date: Jul 2018
Location: Indiana
Post appointment update:

We had a great first appointment. Kaleb is being seen at Peyton Manning Children's hospital. The doctor is very kind and thorough. The appointment lasted nearly two hours. She took time to make sure she understood our concerns and to make sure we understood her suggestions.

She requested that Kaleb go back on an unrestricted diet - no surprise thanks to the advice we got here. I have attached a summary of what we discussed. His colonoscopy and endoscopy are scheduled for August 7th.

Kaleb had a horrible day yesterday but the best day he's had in weeks today. Yesterday he slept 19 hours and had intense pain that caused him to sweat all day. Today he was tired but didn't nap, only had pain when he needed to go to the bathroom, and I didn't notice any blood in his stool. It was so strange, almost like a switch was flipped, but I'm thankful for today.
Attached Images
File Type: jpg Screenshot_20180717-231105_Chrome.jpg (138.8 KB, 24 views)
File Type: jpg Screenshot_20180717-231203_Chrome.jpg (112.1 KB, 20 views)
07-17-2018, 10:17 PM   #33
Join Date: Jul 2018
Location: Indiana
Here is the rest of the appointment summary.
Attached Images
File Type: jpg 20180717_231517.jpg (170.0 KB, 21 views)
07-17-2018, 11:00 PM   #34
my little penguin
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Join Date: Apr 2012

My Support Groups:
Yep that sounds about right
For celiac screening to be accurate for the colonoscopy /endoscopy
He would need to be eating bread for at least a month
Which given the scope date ....
Is less than a month

Prep is standard
Get a good diaper cream or calmoseptine (that is found as otc behind the counter of the pharmacy)
You need a good barrier cream to keep his bottom from being sore

Gatorade organic is all clear so there are 4 flavors to choose from
Start clean out early
When itís like ďpeeing Mountain Dew ď coming out
Then your good
If you start later you will be up all night

Bring extra clothes for you and him
Empty tummies tend to puke on the ride in

Bring an overnight bag for you and him leave it in the car
In case they admit after the scope if they donít like what they see

Ask ahead if you can have zofran on hand to take during prep or on the drive in
This can help with vomiting

Prep is hardest on the kiddo
Scope time is hardest on the parent
But you will get through it

Good luck
DS - -Crohn's -Stelara -mtx
07-18-2018, 01:08 AM   #35
Senior Member
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Glad that testing is moving forward, and I hope that your son continues to have some days like today in the meantime.
Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
07-19-2018, 05:23 PM   #36
Forum Monitor
Maya142's Avatar
Yup, all that (I know it looks like a LOT) is standard. The prep is the worst part - my daughter always chooses a couple of movies or a tv show she can watch in the bathroom during prep.

Once he starts drinking the Miralax + Gatorade, he shouldn't be too hungry. It's a lot of liquid, so he may get nauseous. Zofran really does help - we always have it on hand for scopes/MREs.

And I definitely agree that you should take an extra change of clothes in the car, and some plastic bags/buckets in case he vomits.

Calmoseptine is our favorite barrier cream since he will be going to the bathroom so much. We get it on Amazon. Desitin works too, but my daughter like Calmoseptine better.

They will usually tell you what color of Gatorade not to get - they don't like you using red since it could be mistaken for blood. Some GIs say no to blue and purple too. You also have to avoid jello and popsicles that are those colors.

Good luck!!!

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