Community Connection | Ostomy
My name is Tanya and I live with endometriosis and a permanent ileostomy. I’m of North African and Asian background from Mauritius. For years, I experienced uncomfortable bowel pains and no one could diagnose me properly. I struggled with retaining weight as all of my food would pass through me. It felt as though I was intolerant to all foods. I often found blood in my stools, and I felt permanently bloated. I eventually resorted to eating the same meals every day to avoid upsetting my stomach. Work colleagues would notice and question why I had the same lunch every day.
Like many suffering from endometriosis, I was misdiagnosed with IBS and was advised to cut out dairy and gluten and go on the low FODMAP diet. My stool tests would show high inflammatory markers, and I was dismissed for a long time as being healthy. I did not know that endometriosis could be found on the bowels and was tested for everything but endometriosis. I’ve never had so much bowel prep in my life and honestly never want to see it again!
My ileostomy was formed as a result of endometriosis squeezing my bowels. What happens is that endometrioma can form on the bowel, causing issues similar to IBS and IBD. Because of the extent of endometriosis, I had to have a bowel resection to remove the diseased portions of my bowel.
Looking at my ileostomy for the first time was scary. I was not told I would be getting a stoma bag, and I had no idea what one looked like. It was a complete shock to me. In the beginning, changing my ostomy bag would make my blood pressure drop and I would faint. Going forward, I had to have my family standing next to me to catch me if I fainted.
Living with an ostomy has been the single most challenging thing I have had to face in my life so far. The doctors did not prepare me for it. In fact, I had no idea that ostomies existed until I woke up with one on my abdomen. And adjusting to daily life after that was a challenge too. I was scared to sleep in case of leaks, which happened anyway! I thought this was something I would never be able to adjust to or manage. No one had prepared me for the changes to my body nor did I process that I might not see my body without a stoma bag again.
Even though it was initially a challenge, I eventually adjusted to it. Learning to love myself and regain confidence has been such a journey. Having an ileostomy has made me appreciate and understand my body so much more. I honestly do not know where I would be today without my ostomy. It amazes me to see part of my intestine on my belly every day! It has given me a much better quality of life; one that I didn’t know I needed or could even attain with the way I was suffering. I am now able to eat most foods without worry, (as long as I chew well!) and my bowels are the healthiest they have ever been. Having my stoma means I no longer worry about looking for the nearest toilet when I go out nor do I have to spend so much time on the toilets. I can travel freely without the feeling that I will constantly be in pain from food, and I can wear my favourite clothes without feeling self-conscious about my belly.
Having a stoma affected me on so many levels culturally as well. For me, it seemed like a more nuanced experience getting diagnosed with endometriosis as a person of colour. One of my first experiences of disclosing to a male doctor that I was suffering with my periods was ‘“well, it’s normal for people of your ethnic background.” I was also told by another doctor that “typically the Asian community has heavy periods.” What does that even mean? And how is that any justification for the pain I was feeling? I was too young to understand the term medical gaslighting so I remember just laughing it off. But, now, I realize how damaging those words were for me and are for other women of colour. This contributed to me having to wait nine years for a diagnosis. It was even more shocking that this ‘advice’ came from doctors who were the same skin colour as me.
In spite of how I was treated medically, I have been so blessed to have been well-received by the ethnic community when speaking about my endometriosis and my ostomy. Being of North African and Asian descent, I started sharing my story as I couldn’t find anyone like me, of an ethnic minority, suffering with endometriosis and with an ileostomy. I was so concerned about the religious impact of what having an ostomy meant for me as a Muslim woman and what my family and friends would think. But they have been incredibly supportive in helping me to break down cultural stigmas. I know not everyone is so fortunate. I’ve spoken with so many who feel unable to share their story because of cultural barriers so I hope that I can provide them an outlet through my story.
Living with an ostomy has been nothing short of life-changing, emotional, yet empowering. I want anyone and everyone who has upcoming stoma surgery to know that it will be okay and it is not the end of the world. While it takes some time getting used to, there is so much more life beyond a bag on our bellies, and we can still achieve so much in spite of it. I truly believe that we are never given more than we can handle and I am so thankful that my ostomy has allowed me to have a better quality of life. It may be a love-hate relationship with my stoma, but I wouldn’t have it any other way today!
Follow Tanya’s journey on Instagram: @tanyalivingfree
Tayna Aumeer is a Guest Blogger for Girls with Guts