Sunday, July 22, 2012
Having as many outlets as possible for support, shared information, and ventation is essential for surviving difficult situations such as trauma, health issues and crisis, and other life altering events.
As a child, I only knew two others with an ostomy and those were family members who had ostomies for the same reason I did - FAP. It was bad enough to have severe chronic health issues and undergo life altering, self image assaulting procedures and experiences but it was also difficult feeling alone in my experiences as I didn't know anyone else my age or anyone beyond my family members with similar experiences, period.
My parents started attending a local ostomy support group for myself and theirselves as well, I was connected with a group for children with bowel and bladder diversions and my parents gave me great strength to endure. I survived those tough years in spite of bullying by classmates that didn't know anything nor cared to try to understand what I was going through.
As a young adult, I remained active in my local support group and became more active with the national ostomy association and maintained close relationships with others with similar experiences.
Even this blog is a therapeutic outlet for me. I work in the medical field with chronically ill persons and there are times that I want to share my experiences with my clients or coworkers, but I don't. Sometimes it is frustrating when my clients make statements such as "You don't know what it's like, you're healthy" just because I don't have the same disease as them and currently am the healthiest I have been since a child. I'm not there for my own therapy, so I keep the boundaries clear. But this blog allows me to speak about my experiences in another outlet. Plus, I'd like to write a book one day and this is also helpful for documentation.
After I started being bullied in 6th grade, I was filled with an intense hate and resentment not only toward those bullying me but also in regards to my health. For a few years I tried to cope on my own without much success. Through the support of others, I was able to start accepting myself and my health. It is very hard to mentally survive such traumas without adequate outlets. Through these outlets I survived it all and have gotten to meet and form incredible relationships with many amazing people. I am a much healthier person, physically and mentally because of these outlets.
What are your outlets and how have they changed your life?
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.