I volunteer for both Calgary Ostomy and Ostomy Canada in marketing & communications. There have been a few occasions when I have been around kids from the Ostomy Youth Camp, and I felt triggered about my pediatric ostomy surgery. I couldn't help but wonder why I wasn't a part of the camp during my youth and how that support would have played a significant role in my mental well-being. My story is long and complicated, so I would like to focus on the importance of support this year. 

I had my colon removed due to Ulcerative Colitis in 1992 when I was 11. As a result, I have had eight major bowel surgeries, including a temporary ileostomy, loop ileostomy, ileoanal straight pull-through, J-pouch, and Koch pouch. I have been living with a permanent ileostomy since December 9, 2011. Add all that "medical trauma" to dysfunctional parents who were members of a cult, and you have a recipe for Complex PTSD, which for me has many layers, most prominently involving parental neglect and abandonment, religious abuse, and prolonged health issues.

After years of being in therapy, I have found that attachment theory is the main basis of my trauma. It has led to me having a weak support system in my life and ultimately going through my biggest ordeals alone. According to the Attachment Project, a securely attached parent displays these signs:

• They are warm, nurturing, and attentive 
• The caregivers are attuned to their child’s needs and wants
• Stay close to their child, but still allow them the freedom to explore their world
• Are reliable in their actions
• Focus on who their child is as a person rather than what they achieve
• Encourage a sense of independence in their child

Attachment plays a significant role in how we develop into adults and whether or not we are emotionally available and can form attached relationships. More or less, we learn how to be loving, compassionate, and supportive people through the nurturing of our parents. I am convinced that both of my parents lack secure attachment and that my siblings and I have a fearful/avoidant attachment style as a result. Unfortunately, my mom was raised by an abusive mother and stepfather. I attribute that to World War I and II and a genetic disease in her maternal bloodline that causes dementia and ALS. Then there is my dad, who is half Haida (Aboriginal) and half Norwegian, and the effects of colonialism have led to much intergenerational trauma and ongoing patterns of neglect, abandonment, and substance abuse. My parents were not supportive of each other or their children and had no close friends.

Trauma and attachment issues drove my parents to join a cult, finding community in the arms of strangers they allowed to control their lives. (My pediatric surgery was a near-death experience because of that, but that's another story). The cult or high-control organization enforced the idea that persons outside of the religion were "worldly," creating a small circle of support only to be found within our congregation. It also played a role in estranging us from relatives. My parents decided to leave the religion a few years after my surgery. The result was immediate shunning by our community; I lost all of my friends and meaningful connections at that time. My mom was displaying many unhealthy behaviours, which led to my dad leaving and essentially abandoning us. This all happened within a year when I was about 15. That would also be the last time a GI Specialist saw me until adulthood.

I was a sick kid, with an ileoanal pull-through that caused incontinence, dehydration, anemia, and other ailments. I was merely trying to survive alongside my two younger sisters under the care of a mother who was never home, either working, partying, or doing something to neglect her children. I required medical supplies, supplements, prescriptions, and tons of toilet paper, which I was forced to do without, on top of the bare necessities. To make matters worse, my mother allowed our two cats to go unneutered, resulting in a hoard of 26 cats by the time I was in grade 12. I had always wanted to be significant to her, but over the years I learned I was more of an inconvenience. She would get mad at me for having accidents, and I learned to hide my incontinence issues and not bother her. At the beginning of my final year of high school, I was very sick and had missed school for three days, and couldn't get out of bed. My mom didn't notice this until she got a call from the school and was furious that I asked her to bring me to the emergency. She was more interested in bringing man after man home from the bar and that I didn't embarrass her. Eventually, she allowed a homeless, psychotic man to move in, who insisted that she kick me out as soon as I graduated. My father was heavily involved with drugs by this point, so thankfully, I was dating someone who helped me get on my feet.

Not long after, I had a good job, and my own apartment, my middle sister moved in, and I took guardianship of our youngest sister. In retrospect, I am sure my parents would have lost custody of us years before that had we had any supportive adults in our lives to call social services. As I mentioned, we lost our religious community, and I know that my best friend's mom would have intervened had she still been in my life. (Believe me, I have spent a lot of time doing EMDR therapy on these issues.)

Since my childhood surgery, my anxiety was getting worse, and I was experiencing bouts of dissociation during peaks of trauma, especially during the multiple surgeries in my 20s. I was in survival mode, doing office work, going to metal concerts, church, nightclubs, and karaoke, volunteering at the Metis nation, and in a very dysfunctional way, keeping busy to forget my past. In my late 20s, I struggled with undiagnosed anxiety and depression and, knowing no better, blamed it on my GI issues and "feeling unwell". I know the stress of everything also caused my intestinal problems to worsen, something known as psychosomatic illness.

When my mom passed away from dementia and ALS in 2011, I was emotionally numb and sick of her. We were so emotionally detached from one another that I could barely grieve her death. If anything, I was kind of glad she was finally out of my life. Later that year, I required emergency ostomy surgery, where they asked me whether I would consent to a blood transfusion which I declined (cult tentacles). During this experience, something dreadful started to emerge in me. I was having traumatic memories resurface in both my waking hours and at night. The refusal to have a blood transfusion left me weak and ill and made my recovery even more challenging, and I began to experience extreme fatigue and cognitive issues. I was deathly afraid that I was getting dementia, so my doctor decided to run a battery of tests, where they found Multiple Sclerosis in my brain and spinal cord. This basically forced me to go on long-term disability. No one cared or understood me, nor did I have any means to articulate these emotions. I felt so empty inside. All those factors drove me towards suicidal ideation during that period. 

Growing up, I have had little to no support, and it's been hard to develop meaningful relationships. It has also been tough to navigate the realm of human connectivity with the social anxiety and people-pleasing habits I developed during my formative years in a cult. I have been employed since I was 17, which was an easy enough way to make unsubstantial friendships. Losing my job closed one door in my already fragile circle of support. Dysfunctional parents inevitably led me to be in relationships with people who displayed similar behavioural patterns, like emotional unavailability. But what I feel is so unfair is that my pediatric ostomy surgery caused me to be infertile. Not only did that affect the possibility of having a family and support system of my own, but it also impacted my relationship with good friends I met in my 20s as they began to have kids. At one point, I felt that I would never climb out of this pit of despair, and never feel happiness or joy again.

While disability and early retirement may have closed a door, they opened another, which allowed me enormous amounts of time to confront my past. I had no idea how to care for my mental health, so it was through the church that I began to educate myself about cults, eventually starting a support group with the help of a good friend I met along the way. I have made several ex-cultists friends who share eerily similar backgrounds and miscellaneous traits. I think these are the only tribe of people who can understand why I couldn't go through with a blood transfusion, while to outsiders, "that is crazy", "just get over it".

I also attended an ostomy meeting for the first time. But most importantly, from the prompting of my aunt, I started seeing a psychologist who helped me understand that I was dealing with abandonment and attachment issues, and Complex PTSD. They also encouraged me to find healthy activities to keep busy and cope with distress. In 2015, I read a newsletter stating that the Calgary Ostomy Society was looking for an editor, which was a welcome coincidence for both parties. I have been a very active volunteer since then.

My emotional recovery has been in development for several years. It is threefold: one part faith, not only in the Creator but in myself; the second part, professional counseling for Complex PTSD that gave me skills I missed out on during my childhood; and thirdly, I owe a big thanks to the ostomy society for helping me come to terms with having a permanent ostomy and adding purpose to my life. Seeing a psychologist who could help with my fearful/avoidant attachment style was integral to resolving my PTSD. I can honestly say that today, at age 41, I no longer feel that the tentacles of my past are holding me back. Chaos is no longer welcome in my life, and I am free to live life to the fullest.

I can accept that I may always be short on personal support because of my family dynamics, so I feel it is essential to seek professional help. The support groups I attend have played a significant role in my life and offered meaningful support. For these reasons, I will be a life-long member of the ostomy society. Moreover, I will continue working with a personal therapist who can offer me more resounding support and advice. Therapy has also enabled me to build meaningful, attached relationships, which I am trying to work on with my sisters, and dad. But most importantly, this has always been for my niece and nephew to help end intergenerational trauma. I want to be a supportive aunt who always has their back, no matter what.

I sympathize with and welcome people under emotional distress at ostomy support meetings. They have been through medical trauma and possibly bear more profound long-forgotten issues. Having past, repressed trauma reawaken after a traumatic event is a common occurrence. Some people likely have little support from family; they may have no one to help them carry that burden; they may have never connected with a personal therapist.

Support is the key to getting your life back. There are thousands of people with ostomies in Canada of all ages, cultures, backgrounds, and trauma levels. Ostomy Canada is here for you wherever you fall in the spectrum. We have people who get it! 

Ostomy Canada is a humble, volunteer-driven organization, which I hope to see grow and develop in many ways, including mental health. Please show your support by donating to Step Up For Ostomy!