Hi! My name is Stephanie and I am not a spoonie. Then why would I be here and posting a blog? Over the last fifteen years, both of my younger brothers and my father have been diagnosed with Crohn’s disease. It has affected each of them so differently. My youngest brother got sick very quickly and had to have an emergency colectomy surgery. Yet, since then he has been fairly well (as in he has been managing). My other sibling has had two colectomy operations and has been in and out of the hospital for the past few years. I’ve seen them both struggle through the ups and downs of Prednisone, Pentasa, Azathioprine, Budesonide, Metronidazole, Colonoscopies, Endoscopies (the list goes on) and simply trying to manage a job, social life, family…
I am embarrassed to admit that for a long time when they would complain of pain or being tired, I would think they were exaggerating or would just say, “Well have a sleep, you’ll be fine.” I did not understand.
Two years ago, I began looking into Crohn’s and what it meant to live with a chronic illness. I was shocked to discover that complications of living with such a disease could potentially lead to having a stoma. More than this, I was shocked at the problems people still seemed to have with their Ostomy accessories. Yes, stoma surgery saves lives and yes, there was a huge range of products available, but they all seemed to have similar problems. They were still just a bag. Issues with skin reactions and leaking persists, and the products themselves do little to alleviate the drastic changes in body image and in self-confidence that Ostomates undergo. Nor did they challenge the social stigma.
So I started a company called Ostique and developed a new Ostomy product called the Eclipse. It is a silicone stoma covering and pouch inspired by tattoos, art, lingerie and can be customized to the users individuality. It can be matched to your skin-tone and comes in a range of beautiful embossed designs. It was created specifically for intimate occasions, going to the beach and swimming; times when exposing a typical bag could cause embarrassment. We also use a new adhesive proven to be less harmful to the skin while still making sure it is waterproof!
I know that many people love their stomas and that in many cases it has saved their lives. I am not here to tell anyone how to think or feel about their body. But I do know that stoma surgery can be life changing; I do know that many of the people I have spoken to have gone through dramatic changes in self confidence and body image. Although I hope that one day there will be a cure for these illnesses, until then, I am determined to make products that will empower people to feel confident in their own skin. No one should ever feel embarrassed or stigmatized by their condition.
At Ostique, we work as advocates to teach people about what it means to live with a chronic illness. I have learned so much about what this means through what I have witnessed within my own family. I have since apologized to my brothers for not understanding what they have gone through and try to help them in any way I can.
What has been surprising throughout this journey is how amazing the online ‘spoonie’ community is. Not only have we had so much support for what we are doing as a company, but I can see how much the support and help of this incredible community has helped my brothers and thousands of others. I feel proud and honored to be part of such an inspiring group of people who encourage and love each other. A community that is not ashamed of what they live with, but are proud and strong. A community who continues to fight, every single day.
This is a thank you to all of you. Thank you for helping my brothers get through some of the toughest times. Thank you to people like me, who now understand what living with a chronic illness means.
Thank you. We will keep fighting together.