‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay “OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

6 Ways You (Yes, You) Can Make a Difference on Ostomy Awareness Day

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By Ed Pfueller, UOAA Communications and Outreach Manager

The ostomy community is a big group with diverse medical backgrounds, ages, and attitudes about living with an ostomy. One thing almost everyone can agree on is that ostomy and continent diversion surgery saves lives. We all hope for a day when no one who has an ostomy feels alone in life. Ostomy Awareness Day is Saturday, October 1, 2022 ­and however you are most comfortable participating – you can have an impact. Your voice matters and now is the time to use it or support others who do. 

If You’re Supportive but Busy

I had very little to go on, more to learn than I realized, and felt somewhat lost and well, scared. Discovering United Ostomy Associations of America (UOAA) when searching online for ostomy organizations and associations was a relief and godsend. -Myrna Pair

A couple of clicks is all it takes to put a smile on the face of a resilient ostomate or dedicated ostomy nurse. Check out the heartwarming stories of those on the Run for Resilience fundraising pages. Many of them still need a donation. The Ostomy 5k is the biggest fundraiser of the year for the programs and services offered by UOAA, a national 501 (c)(3) nonprofit organization. We have not met the Virtual Ostomy 5k fundraising goal of $25,000. Donating to UOAA, whenever you have the means, helps to sustain our small but powerful national ostomy organization’s work to improve the quality of life for people living with an ostomy, all year long.

If You’re Active on Social Media

Great, stop scrolling and go share your #OstomiesAreLifesavers story today! Even if you have never talked about it publicly before, consider letting your social networks know the things you have been able to do and witness in life after surgery. Help dispel stigmas and fear surrounding ostomy surgery, you never know which of your connections may have an ostomy or be faced with surgery someday. Post a photo, video or story and tag or DM @UOAA and use the hashtag #OstomiesAreLifesavers and #OstomyDay2022

Another quick and easy way to share your ostomy story is to complete the This or That Ostomy Edition, tag uoaa and post it to your stories.

If You’d Rather Work Behind the Scenes

You don’t have to post ostomy bikini pics to be an effective advocate. Anyone can call or send our action alerts to their elected officials. The U.S. Congress has designated official days for mountain biking and cowboys but not for Ostomy Awareness. This is because of a lack of congressional co-sponsors. Congressman Donald Payne (NJ) is introducing a Congressional House Resolution designating October 1, 2022 as National Ostomy Awareness Day and needs co-sponsors and/or support for this resolution. Contact your Congressperson and ask them to become a cosponsor, by contacting Shahryar M. Baig on his staff at shahryar.baig@mail.house.gov. You can take action here on all of our advocacy campaigns.

These @delta #flightattendants and #pilot were 100% on board to support #OstomyDay2022  – Peenelopie was very excited that the pilot got to hold her! (courtesy Stomagienics)

If You Just Want to Have Some Fun While Raising Awareness

Consider printing out our Ostomy Pouch Character name it, and take pics of it wherever you go Flat Stanley style; send us your pics or post on social media. To make it even easier use our Giphy stickers found here (or search @UOAA_Ostomy)

You can still register for an in-person Run for Resilience Event near you on Saturday (Birmingham is Oct. 8) and join what is often a party atmosphere of music, sponsor tables, food and games – in addition to walking/running. 

Also be sure to wear a stoma sticker from Hollister, the Exclusive Diamond Sponsor of UOAA’s Run for Resilience. Check out all the ways you can celebrate with Hollister.

If You Want to Get More Educated or Educate Others

If you want to get some WOC Nurse level information you’re in luck on October 1st. The WOCN Society is offering an education day event open to everyone free of charge.

For a more Ostomy 101 level of learning use our advocacy tools and infographics as a handout or post online. Feel free to use any of our materials on emotional support, ostomy myths, j-pouches or more.

The day after Ostomy Awareness Day you can also learn more about ostomies and mental health during a Facebook live event hosted by Crohn’s and Colitis Foundation in partnership with UOAA. 

 If You Want to Keep the Awareness Going All Month/Year Long

Here at UOAA we work on National Advocacy all year long. Sign-up for our advocacy action alerts and Monthly E-Newsletter. There is power in numbers, become a national individual member and be counted as an official member of UOAA’s ostomy community. You’ll also get a membership and stoma pin and among other benefits.

New this year, Convatec is planning “Ostober” to focus on ostomy awareness all month long. They are the Platinum Sponsor of our Run for Resilience Ostomy 5k and we’re thrilled to see them keeping the spirit alive all month long.

 

 

Visit our Ostomy Awareness Day landing page for more information this special day. Whatever you choose to do please let us know! If you have pictures, proclamations or stories to share send them to us at info@ostomy.org and don’t forget #OstomiesAreLifesavers

 

We All Need Ostomy Friends

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Why You Should Join UOAA as an Official Member

By Alyssa Zeldenrust

(National Conference attendee since 2011, DuPage County Support Group (suburban Chicago), Co-Chair of Events for Young Adults)

UOAA friends, educational tools, and vendor fairs have been lifesavers for me, so I’d like to share a bit about why I’m a member and what UOAA has to offer.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for the 725,000 to 1 million of us Americans who are living with an ostomy or continent diversion (like a J-Pouch.) There is no need to feel alone, approximately 100,000 new life-saving ostomy surgeries are performed annually in the United States.

Without UOAA and medically diverse friends, I don’t know where I’d be today.

You can join one of the 300+ Affiliated Support Groups in the U.S. for local peer support and information. Whether you’re new or an ostomy veteran, you can get a lot out of UOAA resources.

I make sure every younger person I see at UOAA’s National Conference is welcomed into our group.

In my personal experience with my local support group, it’s a great way you can make friends who truly understand your situation. If you’re an ostomy veteran, you’re incredibly important to the new members of the group because you can guide them through difficult situations. Local ostomy friends are great because you can do social events in addition to support group meetings. I’ve gone to concerts, dinners, and parties with local buddies and it makes me feel so welcomed because nobody judges my body and we all tend to have a little bit of a dark sense of humor after a few years of illness or surgery.

Everyone should also become an official National Member, there is a membership for medical professionals as well. UOAA offers the National Membership for Individuals for an annual fee of $20.00. As an Individual Member you will receive UOAA’s:

  • National Membership pin and a stoma rose pin
  • Monthly e-Newsletter
  • New Ostomy Patient Guide
  • Plus, you’ll be notified when new or updated educational materials are available.
  • Have voting rights for our national elections
  • Can be nominated to be elected to serve on our Board of Directors
  • Will get a membership packet that includes a special promotion code to subscribe to The Phoenix magazine at a discounted rate.

Joining is also about standing up and being counted for advocacy purposes.

When I was too sick to attend the Run for Resilience Ostomy 5k my parents and fellow support group members made sure I was there in spirit with my face on masks.

Some local support groups host regional conferences that can be great. I had so much fun at the Midwest Regional Conference when I was lucky enough to go, and I left with a bunch of notes and new products to try.

National conferences are usually held every two years (Houston, Texas Aug 11-13, 2022 is next!) and are major events that turn me into a tornado of attempted hospitality. I make it my personal mission to find all the younger crowd and make sure nobody is left out and everyone has a chance to bond outside of the educational sessions. We have fun going all out with the parties and dancing up a storm. One of my favorite things has always been the vendor fair because you always find new things to try, and you can talk to people directly about their product. The educational sessions are so good that sometimes I truly have trouble choosing, so then we split up and take notes for each other.

A few people admitted to me later that they didn’t expect to leave with new, actual friends. That sort of thing just makes my heart happy. Without UOAA and medically diverse friends, I don’t know where I’d be today.

 

A version of this article first appeared on Allysa’s blog Partially Unstuffed