by Tiffany Shorson, as originally published in the Winter 2024 edition of Ostomy Canada Magazine.
My gutsy journey began in 1991 when I was diagnosed with ulcerative colitis (UC) at age ten. As I watched my colon disintegrate over the course of a year, I also saw so many other parts of my life crumble, such as family, friendships, and self-confidence. Here is my story on surviving a cult, pediatric ileoanal pull-through surgery, and a dysfunctional family, and how I found help.
On December 17, 1991, I had my first appointment with Dr. Butzner at the Alberta Children’s Hospital after having bloody stool for six weeks. I was put on medications like Salazopyrin and Prednisone. My iron levels were deficient, and by January, I was scheduled for a colonoscopy and thereafter diagnosed with ulcerative colitis. That spring, things were getting worse. I remember having accidents where I soiled my underwear. I was losing weight, having a lot of blood in my stool, and becoming so weak that my dad had to carry me into the emergency room. Part of the issue in my situation was that I was not allowed to partake in a standard medical treatment known as a blood transfusion.
Between August 11, 1992, and September 9, 1992, I was admitted to the Alberta Children’s Hospital and placed on TPN (intravenous feeding) to try to calm down a severe UC flare. I had a fairly decent experience in the hospital, as I was doing all sorts of fun activities, and the gift shop sold all the best toys, like troll dolls. There were two other kids on the ward who were bowel diversion patients. Paul Brandt, the country singer, was also a nurse at the hospital during my stay, and I also met Brett “The Hitman” Hart. And a bittersweet coincidence occurred when my best friend was hospitalized alongside me briefly for her juvenile arthritis.
I was placed on iron supplements, medication for red blood cell stimulation, and transplant drugs in an attempt to boost my hemoglobin. Why, you may ask? My parents were involved in what you would call a high-control organization or cult, and because of that, I was facing undue influence to abstain from a blood transfusion. The elders of my congregation visited me several times to reinforce this rule, but because of my age, things were trickier. My parents were also fighting for my right to refuse blood. A special blood committee from the organization also involved their legal team in a meeting with the hospital administration, where I was told that I would become a ward of the court so that blood could be forced on me if I bled out during the surgery. I was not only experiencing a near-death event during all of this but fearing for my salvation. I have since read an article about children over the age of 12 dying as martyrs for the organization, and I barely missed being featured myself.
On September 9, after the TPN proved ineffective, I went in for surgery. I made it through the colectomy and temporary ileostomy procedure without major loss of blood, and that itself was shocking as I didn’t believe I would survive. My surgeon, Dr. Robin Eccles, explained that my blood was thinned out with saline. I woke up from the surgery with a stoma protruding from my abdomen, and I remember running my hand over it and fainting. I remained in the hospital until September 24, 1992, when I was finally able to go home.
It took months for me to regain my strength because of this medical neglect regarding abstaining from blood transfusions. I had an ileostomy for about seven months, and that was something I was very keen to hide from my grade six classmates, although they had all known I was in the hospital and very sick. Thankfully, baggy shirts and overalls were in style back then, so it was easy to hide. I remember the two-piece system being a beige plastic bag with a square hydrocolloid flange. My five-year-old sister loved helping me change my bag, which we would cut to fit and add some paste. It never ballooned, and I only ever had it leak once, which happened when I was at school. Since I never had any emergency supplies, I had to walk home from school with a leaking bag.
That was only the first step in my surgery. We met with a surgeon for adults who explained surgical options, which was a j-pouch or an ileoanal pull-through. We were told, “Children’s bowels can adapt to hold a larger capacity,” so my mom decided the pull-through would be best. February 10, 1993, I underwent pull-through surgery with a temporary loop ileostomy. I was in the hospital for nine days. The subsequent surgery to close the ileostomy happened on March 16, when I was hospitalized for ten days. The pull-through surgery was challenging to adapt to, and I was experiencing constant incontinence. Until a few years ago, I have never spoken with any who has had a pull-through. Then, in 2020, I met a friend named Michaella via Reddit who had a similar experience. We are both very opposed to pull-through surgery and would love to bring more public awareness to it.
My incontinence issues became chronic. I was also stunted in growth and had delayed puberty. I noticed my friends changing, and I could no longer relate to them, as they were very into boys, and I was grossed out. I also started to become emotionally ‘dissociated’ from the stress of everything. This ordeal was also very stressful for my parents. Around this time, they declared bankruptcy, which I felt personally responsible for. That was only the beginning of their downward spiral. I was still coping with the aftermath of a colectomy, and my mom was getting sick of me needing incontinence supplies and going for doctor’s visits. I was not shown any empathy or support, but rather was subjected to anger and bitterness from her. I began to understand how little I meant to people. September 1995, when I was in grade nine, was the last time I saw Dr. Butzner. (How do I know all these dates when I can’t remember any of my childhood? I actually asked him to pull my medical records and provide those details.)
High school was even worse because, just as it was starting, my parents decided to separate and also leave their religious organization. I lost my dad and all my friends within a month. He was very mentally ill at this time and embarked on a destructive path toward substance abuse. My mom had always been the ‘responsible adult,’ but now she was never home. She was either working one of her two jobs or out partying until the wee hours of the night and bringing home various men. In the meantime, I was still experiencing incontinence, mostly at night, and I had learned to control these occurrences by restricting my food intake. I also had two younger sisters to look after, due to her negligent behaviour. I had to deal with the incontinence by lining my underwear with toilet paper, and many times, I had to just do without that, too.
I recall one occasion where I was experiencing very severe ‘butt burn,’ similar to diaper rash; the pain was so bad that I couldn’t bear to walk or to get out of bed. It went unnoticed for three days until my mom got a call from the school. I asked her to bring me to the hospital, and she was furious at me for inconveniencing her. In reflection, I know that if there were supportive adults in my life, we could have stayed with an aunt, or maybe someone would have called social services. But over the years, the cult estranged us from relatives and then shunned us. My sisters and I were trying to survive in a world of chaos, including a hoard of cats. I had no idea at the time, but my mom was suffering from early-onset dementia.
When I was about 20, I was dating a guy who was very concerned about my health issues and he pressured me to see a doctor. I emailed Dr. Butzner, who told me that I was a year too old to see him, so he referred me to a colorectal surgeon about my incontinence issues. I was told he could try to create a j-pouch, but it might result in an ostomy. I was so scared that I put the whole idea off for another two years and got a second opinion from Dr. Buie, who was confident he could create a J-pouch.
I underwent J-Pouch surgery in 2004 when I was 23 years old. It was okay for about six months, but things deteriorated until it was constant chronic pouchitis and incontinence. I can’t tell you how embarrassing it was to live like that in my 20s when I was successfully employed and living it up with my friends. Life was more about survival back then, and I also had my two younger sisters, one a minor, to take care of while my mother moved across the country with her boyfriend.
I was very fearful of ostomy surgery after the ordeal I experienced in my childhood and all the trauma surrounding it. I also refused blood transfusions many times despite being free from the cult (that’s the power of mind control). When I was 29, I was so fed up with the incontinence that I decided to get a Koch Pouch or Continent Ileostomy surgery.
I flew to Toronto to have the procedure with a surgeon named Dr. Zane Cohen. That was very problematic as it caused several bowel obstructions of the valve, so after one revision surgery, I was back on a waitlist for permanent ileostomy surgery. The year my mom died, in 2011, I ultimately went for emergency surgery as my stoma had narrowed so much with scar tissue that I couldn’t be intubated. In hindsight, the Koch Pouch was a bad idea, as I now have a mild version of short gut syndrome. It primarily impacts my hydration and energy, but thank goodness I have an excellent GI doctor who has helped me manage that, Dr. Raman. Without the Calgary Ostomy Society, and their advice and connections, I would have never managed to get this under control.
Over the years, I have struggled mentally from all of this medical and developmental trauma. During my childhood, I would dissociate, and in my 20s, I was reeling with anxiety to the point where the room would be spinning. Around the time of my last surgery, I was experiencing full-blown Post Traumatic Stress Disorder (PTSD) where I was having all sorts of horrid memories from my childhood come up. It was an emotional roller coaster, and it was not easy to get a diagnosis or treatment. I also went on disability leave from my job in 2012 as I had developed multiple sclerosis and was starting to experience cognitive issues. Because my mother had died of frontotemporal dementia (FTD), I was referred to a geneticist who had my mom’s DNA sequenced from a brain autopsy. My worst fears came true as her results were positive for a genetic mutation called C9ORF72, which causes ALS (commonly referred to as Lou Gehrig’s disease) and frontotemporal dementia. Knowing that I could also inherit that disease sent me into suicidal ideation.
Compounding that issue was the fact that I had very little personal support. My neglectful mother was now dead, my father was a crack addict, and I had become more of a mother to my younger sisters. It was very difficult to articulate the emptiness I felt, which was due to a lack of secure parental attachment. My close friends were having kids, and I was struggling with infertility. Losing my job also meant losing another level of human connection. It was around this time I started to attend ostomy meetings.
Another strange thing is my eating disorder. I suspect I have something called ARFID, as I was a very picky eater as a kid and restricted food in my teens and 20s. I have also been eating a limited diet in my 30’s and into my 40s, and have a list of ‘safe foods.’ During peaks of PTSD, I resorted to binge eating. I have yet to find a professional who will take this seriously.
I have successfully managed to get over many of my aforementioned mental hurdles by actively seeking therapy. I began to see a psychologist trained in Complex PTSD. Since about 2015, I have undergone treatments such as Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy (DBT), Eye movement Desensitization and Reprocessing (EMDR), ART and the Ideal Parent Figure Method. Through this process, my wounded inner child was not only healed but bloomed, transforming into my authentic self. In essence, I have become my biggest supporter, being able to experience self-love and compassion. (Which is necessary to overcome parental negligence). I have learned to accept every aspect of myself mentally, no matter how painful it is. Working with a therapist helped me to reframe negative self-beliefs and feel more emotionally balanced. I also grieved an extreme sense of loss and longing in my life. I also learned how important it is to build a strong circle of support around myself. This includes personal therapy, support groups, attached relationships, and faith not only in God but in myself.
“In essence, I have become my biggest supporter, being able to experience self-love and compassion. (Which is necessary to overcome parental negligence).”
Regina, randomly over Reddit. We both had the rare ileoanal pull-through surgery.
I have been a member and volunteer of the Calgary Ostomy Society since 2015 and have also been volunteering with Ostomy Canada Society since 2019. Over the years, that has helped to reduce my body image issues and to feel less alone in a matter that was once an overwhelming source of humiliation and shame. The sense of support and validation I receive at ostomy meetings is very healing. Volunteering also gives me a sense of purpose, which I find extremely important. I feel my work is valuable and positively impacts society, giving me a sense of fulfillment.
I am sure many adult ostomates would describe their childhood as a ‘hard knock life’ or lack the words to articulate their experience. And you may be feeling very alone with your ostomy. Medical trauma can reopen wounds from long-forgotten childhood trauma, as it did in my case. But I am here to tell you that with the proper support, it is possible to overcome feelings of emptiness, worthlessness, shame, and emotional chaos. Ostomy Canada and its national support network can undoubtedly help ease the emotional burden surrounding your medical trauma through support and education.
I have adopted Ostomy Canada’s motto: live life to the fullest. What does that really mean? To me, it means making the most of the time I have on this earth and enjoying myself in the process. I invite you to take on that challenge!
Tiffany lives in Calgary, AB, and is a marketing volunteer with the Ostomy Canada Society and her local chapter.
This story was originally featured in the Winter 2024 issue of Ostomy Canada Magazine and was sourced by Lisa Gausman, Senior Editor, Ostomy Canada Magazine.
