Did you know that today, October 3rd, 2015, is World Ostomy Day—Many Stories, One Voice?
The aim of World Ostomy Day is to raise awareness for ostomies and ostomates world wide.
Even though our Dad had a ostomy bag for over 35 years, we had no idea there was a whole ostomy community out there. As a matter of fact we didn’t even know the term ostomy nor did we know that people wearing colostomy, ileostomy and urostomy bags are called ostomates; nor did we know ostomy surgeries are performed on all ages, even infants!
We at OstomyPockets want to do our part for World Ostomy Day by sharing what we’ve learned, especially in the way of support, since we joined this community last year.
Support for the ostomy community comes in many forms:
Health Care Providers—nurses, specialized wound, ostomy, continence nurses (WOCNs), home health care workers, etc. Every nurse we have encountered that has ostomy patients is genuinely dedicated to supporting them, helping them find solutions, and enhancing their quality of life. We are so impressed by their compassion and by how tight knit this community is.
Support groups–local support groups, state support groups, national support groups, international support groups, online support groups, online support directories (Ostomy 2-1-1-); the list goes on and on. The #UOAA (United Ostomy Association of America) is a great resource guide for information on ostomies. You can find a support group on their site by entering your zip code or you can join a virtual support group.
Social Media—facebook, and twitter are probably the most popular. You tube videos showing how to change your ostomy pouch as well as soooo many other informative videos are numerous. There are also many, many blogs where ostomates share their stories. Some are heartbreaking, honest stories of their struggles; others are uplifting and inspiring tales of how they have overcome obstacles and regained their lives back and so many more.
Fundraisers–5k runs (go to www.ostomy5k.org) for more information on run locations as well as virtual run/walk info—yes, you can even join in from the comfort of your own home.
Ostomy fairs & trade shows usually put on by local support groups
Ostomy supplies—to aid with the pouching systems–many of which have been designed by ostomates because of a need they are meeting. This is the case with OstomyPockets as well–designed by an ostomate because he couldn’t find anything on the market that worked in supporting his ostomy pouch to keep it from moving and chafing his leg.
Publications such as #The Phoenix magazine published by UOAA chocked full of information about ostomies. There are also many books written by ostomates such as “Better with a Bag than in a Bag” by #Joann Tremblay with her sequel “Another Bag Another Day: Creating a new Lease on Life in a New World”.
The list for support options is endless. However, even though there are so many groups offering so much information, many ostomates and their care givers don’t know about them. We hope by posting these many outlets for information, #OstomyPockets has helped World Ostomy Day’s mission of raising awareness for all ostomates.
I see a movement (no pun intended) where wearing an ostomy pouch is not only accepted but worn with pride. From everyday people to models to body builders to athletes, these ostomates are no longer hiding their ostomy pouches. They are wearing them and showing them. With an estimated one million ostomates in the United States alone, doesn’t this make so much sense.
In addition to helping raise awareness through this post today and sharing our story about our Dad in last week’s post (Dad and his ileostomy), #OstomyPockets will be attending Sacramento area #Carmichael Ostomy Association’s mini trade expo as a vendor. We wish World Ostomy Day great success in your mission!
Please share this post to help World Ostomy Day raise awareness for the ostomy community.
All the best!
I’ve had an ostomy now since 2018 after being diagnosed with colon rectal cancer. The cancer is gone and I decided to keep the Ostomy. However every morning I have difficulty moving my bowels. Cramps can be very severe. I’m very careful what I eat your vegetables because they’re gay see no nuts I take the miralax. However I still experience a lot of pain every morning can you help me
Hello Mary Ellen,
Thank you for writing to us. I can only imagine what you have been through to get to where you are today and I have much compassion for you for that. That is wonderful that your cancer is gone!
We are in the ostomy community because our dad was an ostomate. Although we are not qualified to give any medical advice, there are so, so many others in the ostomy community that are–both through their own experiences and/or their expertise in the medical field, specifically WOCN’s. Do you have a WOCN (Wound Ostomy Continence Nurse) in your community you can reach out to? If not, I recommend you reach out to one–they are so very compassionate, caring and knowledgeable. As well, there are Ostomy Support Groups all over the country (and the world for that matter). As well, you can check out the sites listed on our related links page. You can contact many of them with your questions.
The one small bit of information I can add is a story from my dad (he had an ileostomy). He had an apple for a snack around 3 in the afternoon then ate supper a bit later. The food he ate for supper was being digested much faster than the apple so the apple was blocking his supper that was trying to pass through his stoma. He was in excruciating pain for several hours until all was able to pass. I don’t know if this will help you, but thought it worth mentioning.
We sincerely hope you find the answers to help you get comfort and wish you continued health. Please feel free to contact me with any further questions.
Jeanne