Tag Archive for: LGBTQ

Embracing Life After Surgery 

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Before cancer came into my life, I was a very social person. My various professional ventures along with the diverse group of friends kept me on the go. Even though I dealt with anxiety it was mild enough that I was still a social butterfly.  

I was diagnosed with anal cancer on May 5, 2015, that’s Cinco de Mayo. We had the day planned, going to the groceries for Taco & Nacho Day. Watch mindless shows and spend the day together.  

Much like others like me, your caregiver becomes your world.

We were three years into our relationship, and this was not on our Bingo card of relationships… Or was it? That whole summer was spent in bed or on the couch sleeping. I couldn’t stand a lot of smells or people- so not much socializing.  

Much like others like me, your caregiver becomes your world. You are dependent on them for food, medical needs, and conversation. Chrisitan, my boyfriend, was all that and more. He was also my punching bag and took all my frustration and honestly, I don’t know where he put that energy.

It made our relationship stronger; it tested the relationship and us. He also helped me get back into the real world easier although it takes the caregiver longer to step out of his role. I don’t know if they ever leave completely.  

It took almost six months to decide or be convinced for the ostomy surgery. I had done hyperbaric chamber treatment, and we were hoping things would heal. We expected a miracle. My sphincter would not grow back.  

Diapers were not very convenient for work. I traveled quite a bit and changing on the go was a pain in the butt. Those changing tables in the bathroom don’t hold an adult! I finally picked a date for the surgery.  

My surgery was scheduled for April 1, 2016. If that date sounds familiar it’s because it’s April Fool’s Day. Yes, my surgery was a joke, and I wasn’t laughing. I didn’t have a mentor, buddy or a nurse to tell me what to do. My brain was in constant conflict between I don’t want anyone to see me, and I need to get back out in front of people. I wanted to act, public speak, or at best go shopping and try on clothes.

Go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.  

When I first started to go out in public, I would use surgical tape and bind my bag down. I was sure that if I taped it hard enough it would go away. I felt so self-conscious that I would wear shirts one size larger.

Then one day, in a support group, I heard about wraps. I had to look up this miracle device that would give me back my manly figure. As if they were security secrets that you had to find through a scavenger hunt.

I felt confident, strong, and back to me… Kinda. I felt like a piggy bank and that everyone was looking at my belly. Finally, Tommy the Ostomy and I had worked out the kinks, made peace, and became frenemies… Kinda.

Eight years later I am out more, I travel more, and still panic a bit. Tommy still manages to surprise me from time to time. Almost every day I put on my belly-bra to keep things tight and snug, and I watch my weight so things don’t pop out.

I still get panic attacks, I still think everyone is looking at me, and I still think I’ll wake up and It’ll be gone. Except I have more self-esteem, I share my story, and I look great in a tight shirt and jeans!

If I could share any words of wisdom if a new ostomate it would be go hunting online for patient stories and trusted information like this website. Find a support group and ask as many questions as pop in your head. Some things you’ll learn on your own but we’re here to help.

Another thing, go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.  

JoAnna’s Story: Coming Out of The Shadows

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For as long as I can remember, I have found myself fitting in amongst groups of people who don’t stereotypically “fit in.” I recognized early on that because I had an absent lifestyle, consisting of traveling hours away to cities with hospitals and specialists unavailable to me in western Kentucky, it gave me the freedom to be invisible.

I was born on a crisp, autumn Friday in September 1991. My mom’s earliest indication something wasn’t right was a large bruise that developed on my lower back, days after I was born. However, her concern was met instead with my pediatrician looking into her eyes and saying, “Some babies are just born special!” Special comes in many forms. For me, that included a mature, type 4 Sacrococcyxgeal Teratoma. This just means I had a slow-growing tumor that wreaked havoc on the organs surrounding the sacrum and coccyx and went undiagnosed because no one could see it.

In a world where it is easy to stay isolated and afraid of connection, I have found some of my closest companions were waiting for the same opportunity; hiding away behind their shields of invisibility.

A steady decline in my ability to hold my bowel and bladder, beginning well after potty training, was the next signal that I had something going on. However, it was not until I was seven when the tumor abscessed, that my childhood was shifted into a very real, life-long game of “Operation.” During my third Teratoma resection at the age of 14, my new colorectal surgeon advised that a temporary ileostomy would be needed to allow everything time to heal. Fortunately, the surgery was in May so I had the summer months to hide away as I wanted to.

JoAnna with her best friend Caleb whom she met at Youth Rally at is a natural companion whether attending a UOAA National Conference or a Pride Celebration.

I started my sophomore year of high school with the ileostomy, and having only had it two months at the time with little self-management, I resorted to staying home from school most days for the remaining two months until it was reversed. I found a bit more normalcy in my teen years, discovering friends with similar interests and personalities and things in their own lives making them special to distract from my ability to fade in and out of view.

A few years later, just before my 18th birthday, I left home to attend college in Tennessee. It was a new world and I could be anyone I choose. For the first time, I wanted to be fully present in every moment and not miss a thing. In reality, I spent what I remember feeling like almost all of my first semester of college writing papers while sitting on the toilet of a shared dorm suite. Through discussion with my surgeon and with the understanding that I didn’t want to hide away anymore, I decided it was time for a permanent colostomy in 2009. Not only did this decision provide the opportunity to be present and live life to the fullest but also allowed for new purpose and adventures, all on its own.

It was in 2011, attending my first year as a Counselor In Training at Youth Rally, which is THE camp for young people with bladder and bowel dysfunctions here in the US, that I was included with a group of counselors and campers affectionately labeled by the members as “The Island of Misfit Toys.” Truthfully, we were just the miscellaneous diagnoses group that didn’t have enough members separately to each have our own. The symbolism of being a misfit toy, that found belonging and purpose in a group of other misfits, has continued throughout almost every social group that I have been a part of.

The beauty of events like Youth Rally, as well as the UOAA Conference, is providing a safe place to build community without fear of judgment for identifying in a way that is taboo or sometimes uncomfortable to discuss. In a world where it is easy to stay isolated and afraid of connection, I have found some of my closest companions were waiting for the same opportunity; hiding away behind their shields of invisibility.

Not only had I grown into a person who wanted to be known and accepted, but more importantly, I wanted to be chosen and loved. I grew up as a girl in the Bible Belt, with the idea that someday I would find a man who would love me and my ostomy, and then everything else in the world would make sense. Intimacy was scarce, considering my body confidence issues, so I resolved to wait. I had faith that my person would come along and I would know when it was right. Just as I had spent other portions of life in the shadows, wishing and waiting for my moment to come, it would probably surprise no one that another place that I had stowed away was inside “the closet.”

Like my experience in the Ostomy community, identifying as a member of the LGBTQIA+ community has provided a safe place to be authentic and explore who I am and want to be as a person and partner. The intersection at which these identities meet has given opportunity to some of the most profound and pivotal moments in my life. It would then also not be surprising that I attended Pride celebrations before and after “coming out” with my best friend, Caleb, whom I met while we were both first-year Counselors in Training at Youth Rally. He is the same friend that I invited to join me at the UOAA Conference as it made its way to my current city, his hometown, this past year. In our truest fashion, I am happy to say we show up loud, proud, and ready to make our place in the world; no matter the occasion.

I work daily to overcome my old habits of hiding away, having to refocus to remember that the life that I have created was done only by my participating fully. On the difficult days when I have trouble seeing for myself, I am blessed with friends and a partner who assist with some needed perspective. I aspire to be the same for every person I meet.

So, in case you are new here; no matter how you identify…

Hi! I am JoAnna and I am glad you are here.

 

October is a Good Month to Unmask Your True Self

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My View: By Connie Confer

Most of the nation is gearing up for Halloween, with all of its tricks and treats. But as a lesbian who wears an ostomy bag, this month also includes some more personal holidays worth celebrating, especially if we want people to feel more accepted and safe.

Did you know that Oct. 5 was Ostomy Awareness Day? Just like the more established National Coming Out Day (Oct. 11), it brings an opportunity for people to celebrate their differences and their courage as they announce, perhaps with some trepidation, that they live with certain realities. They hope their family and friends will not shy away. They hope their bosses will not fire them.

That fear is completely rational. Just this week the U.S. Supreme Court heard oral arguments in cases that could indeed decide whether someone can be fired for being gay or transgender. We will have to wait for months to hear their decision and how it will impact our laws. But in the meantime, I want to advocate for acceptance, not alienation. I want to argue that open communication creates community and reduces stigma for people in my own life circumstances.

Yes, it is tricky to navigate the reactions of the world, and it takes some courage. But the treat continues to be that we are not alone. The LGBTQ community is indeed a family, with gay pride parades in every major city, and support groups for people who want to come out to their friends or family, or for parents and other family members who want to support a gay or transgender young person navigate in an unfamiliar world.

Connie Confer, left, at the California General Assembly where she has been key to getting proclamations to recognize Ostomy Awareness Day.

Similarly, my local Southern California, Inland Empire Ostomy Association, offers support and practical advice for people who find themselves facing surgery for an ostomy pouch. As do over 300 other United Ostomy Associations of America (UOAA) affiliated support and Information groups nationwide.

No wonder people worry when they hear they will be among the 100,000 people in the United States who will get an ostomy this year. The treatment for diseases such as cancer or Crohn’s almost sounds worse than the disease. People wear a pouch attached to the abdomen that holds urine or feces that must be emptied and changed regularly. It can be embarrassing to talk about it, but just the same, we must.

That surgery is life-saving. I am living proof. And the routine of wearing the pouch seems quite easy and normal to me now. I find that I can talk about it with people close to me, and that I do not feel any stigma. For others who want to get to a place where an ostomy pouch feels routine, you should consider attending a UOAA affiliated support group near you.

There is no reason to suffer in silence and there is every reason to be fully and proudly yourself, no matter what your reality. And if you are not impacted by these specific things, make sure you are supportive to friends and family who are.

Life lived honestly can be a real treat.

Carolyn “Connie” Confer served as the assistant city attorney for Riverside, California and has advocated for the LGBTQ community for decades. She was there in September when Assemblyman Jose Medina declared Oct. 5 as Ostomy Awareness Day in California in honor of the work of the Inland Empire Ostomy Association.