History and Future

Rectal bleeding is not a subject that is talked openly about in public.  Colonoscopies are not pleasant, nor are they promoted like breast exams are.  When I experienced them in 2008, I felt very isolated and alone.  When the doctor said that he had removed some polyps, he reassured me that they were not cancerous, so I didn’t take matters very serious. That was the first in a series of errors because of my subconsciously choosing to ignore something I didn’t want to accept.

Herniated discs in my back were the reason for an MRI in 2011.  A tumor in my abdominal area is what was discussed much more than the herniated discs!  It seemed like forever at the time, but within 3 months, I had undergone a complete hysterectomy.  A woman’s ovaries (when normal) are about the size of an almond.  Mine were much larger – One was the size of a large orange, and the other of a large grapefruit.  But they had removed everything, and I didn’t require chemo.  Once again, one step ahead of the game…

Constant diarrhea, along with rectal bleeding (again) and rapid weight loss landed me back in the hospital for ostomy surgery in March of 2014.  The only pre-op events were getting registered, and a brief discussion about how they were going to remove the inflamed intestinal tissues.  I was not pre-marked for an ostomy; I was not given any counseling about what I needed to prepare myself for; and I had no idea whatsoever what I was about to face in regards to the costs associated with being an ostomate.

I was in the hospital all but 5 days out of the first 30 post-op.  I had a lot of problems with dehydration due to having very little guts left.  They had to remove all of my colon (not even a rectal stump left) and all but 120 cm of my small intestine.  By the time I went home, I was getting pretty good with emptying and changing my own ostomy appliance.  But while in the hospital, everything was supplied.  I still had no idea about the costs nor did I wonder where the supplies were going to come from once I got home.  I had no insurance.

I began looking through the printed materials I had been given in the hospital.  There were a few suggestions for resources, etc.  But reality was setting in, and I was at the beginning stages of sheer panic.  What was I going to do from here?  That is when I actively began searching for information.

The more I looked, the more I realized that there are a lot of people searching for the same info I was.  That is when I decided to organize what I gathered into a directory that would be useful to others.  As I learned more, I could share more information with others.

I wanted to do all I could in order to keep someone else from feeling the panic and despair that I had.  I asked my Ostomy nurse (where I had my surgery) what I could do to give back.  She mentioned the need for ostomate visitors.  It would be helpful to have an actual ostomate that people could talk to and relate with.  I took the steps to become affiliated with the UOAA and CCFA to begin with.  I had suffered from symptoms related to IBD, and UOAA offered the training to become a visitor.

I am the Founder and Director of Ostomy 2-1-1 Inc.   “2-1-1” is what a person dials in the US to access a directory of services. Ostomy education, support, advocacy, and resources are what we provide through Ostomy 2-1-1 Inc.  We are a nonprofit 501 (c)(3) organization, committed to the improvement of the quality of life of people who have, or will have an intestinal or urinary diversion; have or have had any type of cancer or cancer treatments in which the intestinal or urinary systems were affected; or suffer from Crohn’s Disease or Ulcerative Colitis.  We are dedicated to the provision of information, advocacy, and service to and for our members, friends, families and caregivers (the intestinal/urinary diversion community at large).

We strive to nurture working relationships with medical and nursing associations, government health administrations, other organizations, and ostomy product- and service- related manufacturing and distribution entities who share common humanitarian quality of life goals.  We are not in business to raise money, except for what is needed to carry out the group’s programs and activities, and to support, as deemed appropriate, the programs and activities of supported organizations.

Ostomy 2-1-1 Inc. (through partnerships with United Ostomy Association of America, Crohn’s & Colitis Foundation of America, Colon Cancer Alliance, and American Cancer Society) provide:

  • a web-based directory of products and services (www.ostomy211.com)
  • patient and family visits by trained fellow ostomates (pre-op and post-op)
  • volunteer services in the Ostomy departments of local hospitals
  • ostomy supply pantries from which donated products and supplies are distributed to those in need
  • support groups in which the avenue of online social networking facilitates 24/7 support of ostomates, people with Crohn’s and Colitis,  and their friends, families, and caregivers
  • publications relating to bettering the quality of life for ostomates, those with IBD and cancer, and their support networks.

Awareness is the biggest factor in obtaining help for those in need. The more we can learn, the more we can share with others.  Helping others with similar issues is our passion.

Ostomy 2-1-1, Inc.

60 Vera Place

McLoud, OK  74851

http://www.ostomy211.com

https://www.facebook.com/ostomy211

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