Crohn's Disease Forum » Parents of Kids with IBD » I am a nebbie to forum

04-07-2013, 11:56 AM   #1
Kathy M
Join Date: Apr 2013
Location: Watertown, New York
I am a nebbie to forum

My son Jason who was diagnosis with Crohns August 2011. Jason is now 34 years old, my son is mentally disable and is non-verbal. In the past 20 months Jason has had his large intestine removed and is using an ostomy bag, has been admitted several times for blockages.
Jason developed hernias which came out through his stoma. The first repair a single mesh was put in to strengthen the site, but it lasted a few months and then Jason developed another hernia. Went into hospital Feb. of this year to repair hernia using another layer of mesh to tighten the site, while in the hospital recovering from the last repair Jason developed 3 other blockages.
Jason had too have another surgery an had over 2 feet of his jejunum closest to the stomach removed, and two small repairs near the lower part of his small intestine. Jason has lost a lot of his appetite.
Because of the condition of Jason digestive system the Dr. feels that it is not safe for Jason to have anymore surgeries.
When Jason was first diagnosis, I learned all that I could about this disease, and decided that it would be best for Jason to puréed his food so that Jason's digestive system could absorb all the nutrients. We are now waiting to go back to Jason's nutritionist, so Jason has a better chance to absorb all the nutrients he can since Jason has cut back on what he wants to eat and drink.
04-07-2013, 12:13 PM   #2
Forum Monitor
Niks's Avatar
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
Hi Kathy and welcome!

Your poor boy! If he is non verbal he must have suffered so much without being able to tell you. I work with a lot of non verbal autistic young adults and often wonder how they'd manage if they were going through what my daughter is going through and how they would be able to communicate their pain etc!!!

It sounds like you've both been through so much, but you are doing a fabulous job!

Is he happy with the pureed diet? What were his symptoms and does he need to supplement with Ensure or equivalent?

There are so many really lovely people on here with lots of advice and support. Sending you both huge (((HUGS)))

Keep us updated xx
Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.

Peristeen Irrigation every day.
Self Catheterisation

Waiting for bowel stimulator!
04-07-2013, 02:04 PM   #3
Crohn's Mom
Crohn's Mom's Avatar
Join Date: Mar 2011
Location: Florida

My Support Groups:
Hi Kathy and welcome!

I'm so sorry for all you and Jason have been through. It's great that you have tried to educate yourself on his disease. I can't imagine how hard it must be on you and him, since he is non verbal.

Has he tried Enteral Nutrition via NG tube ?
There is a wealth of information on this site about it,and it has helped so many to achieve remission.

Here is a link to our sub forum, so please have a look.


Best of luck and please feel free to ask as many questions as you like, or just vent away! We have a great group of caring people here!
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
04-07-2013, 03:19 PM   #4
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:
Sorry to hear about your son.
I would second the EEN or even EN with something already broken down ( peptide or peptamen)
DS - -Crohn's -Stelara -mtx
04-08-2013, 12:43 AM   #5
Holding It Together
CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Welcome to the forum, Kathy. You must be exhausted from this ugly beast of IBD and how it has been attacking your son! I'm so sorry you and he have been having to go through all this. I hope we can help support you - you are welcome here.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-08-2013, 04:55 AM   #6
AZMOM's Avatar
Join Date: Nov 2010

My Support Groups:
Glad you're here. Hate to read all the trauma Jason as been through!!!!



Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-08-2013, 06:29 AM   #7
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hi Kathy M and

I am so very sorry to hear of all your son has been through and continues to go through. He surely has been through the wringer.

I agree with what has been suggested regarding EEN/EN as a way of calming his bowel and providing nutrition. Has Jason ever had Enteral Nutrition in the past?

Is he on medication?

You might also like to visit the stoma subforum, there are loads of friendly and knowledgeable people hanging out there:

Good luck and welcome aboard!

Dusty. xxx
04-08-2013, 07:29 AM   #8
Senior Member
jmckinley's Avatar
Join Date: May 2012
Location: Alabama
Welcome to the forum. I just wanted to send you hugs and support. You and your son have been through so much. I am so sorry. I agree with the EN. It would provide some nutrients that may be left out in the pureed food. What a great idea to puree the food!

Hang in there!
04-10-2013, 05:42 AM   #9
To save time...Ask Dusty!
Dexky's Avatar
Join Date: May 2010
Location: Kentucky

My Support Groups:
Hi Kathy and welcome! You guys have had a terrible time of it!! I don't know how to ask this w/o sounding insensitive but is Jason ok with his stoma and trying new things? Can he maintain his stoma bag etc. by himself? I hope you get his nutrition needs sorted!
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club

Crohn's Disease Forum » Parents of Kids with IBD » I am a nebbie to forum
Thread Tools

All times are GMT -5. The time now is 07:58 AM.
Copyright 2006-2017