As we get ready to celebrate Ostomy Awareness Day on October 5th, I wanted to share my personal ostomy story. Recently, I filed a proclamation request for Ostomy Awareness in my state. While writing the request it opened me up to a very vulnerable and painful part of my past that I never fully processed. What a blessing, because this is how we heal!
Living with an ostomy is a true test to one’s physical and emotional health. Raising awareness is sharing our personal stories of those physical and emotional experiences. It’s only with this vulnerable truth that we allow other ostomates to normalize their own physical and emotional experiences. Additionally, ostomies carry many misconceptions and misconceptions lead to barriers. So, lets help break those barriers and shed light on the realities of living with an ostomy!
Here is my story:
I was diagnosed with Crohn’s disease in 2008. I can’t say I was surprised. As a child I often had very bad stomach aches, I’d sit and strain on the toilet for hours in pain. Growing up in a household with limited finances, we didn’t see doctors often. In fact, I would often go to the school nurse to complain about minor things just to get the attention I was seeking - help with my stomach. My pain was “invisible” so it was dismissed by the school nurse and my parents. I had several accidents and was often scared of using the toilet at school. I didn’t want other children to hear me struggling, or just the opposite, hear me going too much.
Into my adult life I experienced the same pain, but by now I was in “survivor mode” as a single mother. At this point I was told my issues were “stress” related or “female” issues, even being misdiagnosed with endometriosis and given a hysterectomy! When my intestines finally obstructed I felt relief. Not pain relief. I finally felt relief of being seen and validated from all those years of pain. Pain that felt like my intestines were bursting open, extreme waves of heat, sweating, shaking and laying on the bathroom floor crying and moaning with my children in the next room, alone.
After my Crohn’s diagnosis I followed doctor’s orders despite my symptoms getting worse. Of course, from all the years of undiagnosed Crohn’s Disease, my intestines were scarred badly.
The doctors tried various medications, infusions, shots, even surgery, but they did not help my symptoms. What made my disease worse was that my mental health, also left untreated, became worse. In fact, looking back, I now see that my mental health symptoms and my stomach issues started around the same time as a child.
I didn’t think twice about ostomy surgery, I desperately wanted to feel better. As soon as the colon and rectal surgeon suggested it, I scheduled it! I was desperate to try anything. I was 34 at the time and thought that maybe it would be a temporary thing anyways. My doctor said so too. The idea of major surgery and wearing an ostomy bag didn’t thrill me, but not feeling better scared me even more. The pain, at this point, was taking me down mentally. I didn’t want to live anymore.
I was young, a single mom and in a newer relationship at the time of my ostomy surgery. In the beginning I did have a few leaks in the middle of the night, or the time I was in the grocery store and my bag literally exploded off me. My boyfriend was pretty supportive, although we ultimately broke up a few months later. Was it the ostomy, I’ll never know. Again, I was still in survivor mode which meant I didn’t have time to focus on the fact that I had an ostomy let alone wonder if it was too much for him. I knew I was somewhat better and that’s all that mattered at the time was that I could work and take care of my children.
When life forced me to slow down and my children grew up I was able to embrace some freedom. I even bought a van, lived in it and traveled across the country (ostomy supplies in tow). I started learning more about my condition and incorporating holistic healing practices. I believe that with my ostomy, and listening more to my bodies likes and dislikes, I have healed most of my pain. I feel the best I have ever felt.
As the years passed, the only fear that set in was the thought of getting a reversal and regretting it later. The pain that stole so much of my life and my children’s life prior to surgery is not welcome here. I believe my ostomy will be with me for life, and I’ve accepted this.
Some refuse ostomy surgery because they would rather deal with pain then dare to have a “bag.” Some are concerned of having major surgery, body image, leaks and skin problems just to name a few. These are all valid concerns. What I would like people to know is that an ostomy can drastically improve your life, or get you back on track to getting healthy again. Nothing will ever cure the underlying condition, but living a life with less pain is far more important, to me anyways.
222