Everything OSTOMY Teen:

IBD Emotional Support Resources

 

Cedars-Sinai IBD support group:

For parents/spouses of IBD patients & Adult IBD patients

(non ostomy specific) Second thurs of every month 7-8:30pm PEC building Cedars connections@connectingtocure.org for more info and to rsvp. (Depending on the situation and age teen may attend group)

Facilitated by Amy LCSW and Edward Feldman M.D.

Crohns and Colitis Foundation:
Up to date research
Large online support community. blog, stories, educational conferences, information portal Camp Oasis- near Palm Springs gorgeous camp for kids with their specific chronic illness Meet others with IBD and ostomies
Paintedturtle.org another IBD and ostomy camp for kids
Runs and walks/ galas and fundraising to benefit IBD research
Educational conferences
Crohnsandcolitisfoundation.org
College/employer info and advocacy

Childrens Hospital LA (CHLA) Teen IBD support group: ages 13-18
At CHLA on sunset blvd. 2nd Wed month 5:30pm Facilitator Talya Isaacs 323-361-5188 Tisaacs@chla.usc.edu to RSVP Parents welcome

Patient to Patient connection: Our IBD team can match you with another teen or adolescent of same gender and medical diagnosis

with ostomy and similar age to connect with either in person or over phone. We have names of wonderful advocates. Email Amy, LCSW amy.mann@cshsc.org

UOAA united ostomy association of America: a valuable resource for support, advocacy and information. Unfortunately, there is only one ostomy group older adults. There is no teen or pediatric ostomy support groups in southern CA.

Glenda Hamburg is an amazing RN, BSN, CWON facilitator and wealth of knowledge been doing ostomy and ostomy care for 30 years. Her phone is 818-337-8416. Email: oalaemail@gmail.com
When looking for ostomy RN: CWON is a Certified Wound Ostomy Nurse

Ostomy You Tube Channels... (MY FAVORITE RESOURCE)

Tips, tricks, lessons, suggestions, empathy, advice Let’s Talk IBD Channel with Maggie Baldwin
Laura Cox Ostomy Lifestyle expert
YouTube dressing with an ostomy

Club11 health, an online support community of ostomates to share and connect
Facebook: Girls with Guts, a wonderful private forum FB group for girls with IBD and ostomies

Psychotherapist with a specialist in chronic illness/ PTSD/ Medical Trauma see social worker for referrals

 

Garments/ spandex/ Underwear/ Covers/ and Stoma Support:

Ostomy Underwear: comes in varying levels to reach your abdomen, high and low waist depending where the bag is located on your side, boxer or brief. No labels so no rubbing. Bag inserts into little pouch in lining so layer of fabric between skin & bag. Have built in barrier and support. Some have extra layer to muffle noise. Tummy control high waisted underwear is good alternative on amazon.

Ostomy Support or Stoma Belt: A binding belt brace designed to keep bag tight against body. Adjustable and pouch support to keep the ostomy appliance within. Assists with comfort, stoma leakage and irritated skin. Bag comes out a hole in belt. Horizonal or vertical option depending where bag located. Good for active lifestyle and physical activity. 3 support levels light moderate and max. Hollister or Nu-Comfort support belt is thin and attaches to pouch with clips.

A bag cover: a round cover which goes over the bag to hide the contents if it hangs outside your clothes or belt.

Ostomy Waistbands/ Wraps: Go around your torso soft stretchy light support wrap for everyday use. Flex band is discreet and form fitting, internal pocket for bag.

 

 

 

 

Premium Stoma Support Brands & Websites:

Pouchwear.com Stealthbelt.com

Comfizz Spanx

Amazon has many more options for lace and feminine panties for intimate wear Basic camisole tight tank top is commonly used

There are ostomy accessories including hard barriers for sports/ and to muffle noise High waist swim- suits

Tips and tricks from fellow ostomy patients.... what I WISH I knew:

  • Ostomies make noise, this is natural and normal! The digestion is now happening at the surface of the skin rather than under layers of skin muscle tissue. Stoma gurgling and

    loud noises is normal and OK. Some people may muffle the noise with more clothes or

    various stoma covers, hard shells, others learn to turn their body if that helps. Overall it has to do with your comfort level. Just know this is a common and natural & we are

    aware it can be one of the most embarrassing and difficult social issues having a bag.

  • Initially bring a change of clothes and ostomy supplies when you leave the house (just

    in case)

  • Keep food journal for what foods cause you gas. Refrain from these foods nearing

    bedtime in order to avoid bag bursting.

  • Don’t stop living your life! You can still exercise, swim, shower, play.

  • Use fragrance free baby wipes or lotion around stoma and bag because the oil from the fragrance won’t let the bag adhere well

  • Don’t feel that you must explain your surgery to everyone who asks. It is your choice who you choose to share with and how much information you are comfortable sharing. Some people are just curious and explaining that you had an abdominal surgery is more than adequate. Sharing your story can be powerful however and help educate the larger community and your circle of friends that people with an ostomy are all around us living healthy lives.

  • Develop a sentence or two explanation for your chronic illness, or diet restrictions, or symptoms to have when needed to relieve the anxiety of what you want to tell others.

  • For instance, “my body can’t digest things that are very fibrous.

  • People may say unwanted and insensitive comments like “but you don’t look sick,” this can feel very bad. This takes away from the trials and tribulations of your IBD

    experience. The bag may feel like an external visible reminder your anatomy is different

    now. There may be feelings of loss of control. You are not alone and just known nearly 1 millions Americans have an Ostomy.

  • School Advocacy can really help: all universities and schools have a disability program where kids may receive accommodations such as bathroom privileges, single bathroom dorm rooms, priority housing /class registration etc. The medical social worker or you doctor may assist with this.

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