Hi, My name is Mariam Khan, and I was born with Chronic Kidney Disease. I started having surgery for it in 2002, at the age of 5, and had my right kidney removed in 2022. In that course of 20 years, I had surgery over 20 times, and frankly I lost count. Then, in the midst of this, I was undiagnosed for 3 years with Perianal Fistulizing Crohn’s Disease from 2021 to 2024. In this time, I was in the operating room over 30 times. At 28, I have achieved what most will never endure in their entire lives: Surgery over 50 times before the age of 30. In this time, I lost my right kidney, part of my colon, my rectum, my anus, and I gained a permanent colostomy bag. I also almost lost my life 3 times in 3 years in 3 separate occurrences from surgical complications. All of this would be enough to make anyone want to quit. But I didn’t. For a long time, I thought I would have to move on and hide in shame of my Perianal Crohn’s Disease, especially as a South Asian woman. The stigma is overwhelming, and I have had family members ask me when I’m removing “the bag.” Instead, I decided to change the narrative. I owned being chronically ill. I shared my story through TikTok and Instagram and gained a community of fellow ostomates and fistulizing Crohn’s disease buddies. I started my own Podcast, “Shit Talk,” to connect with others going through IBD and chronic illness. I even started sewing custom ostomy covers, hence the brand, “Mates” (short for Ostomates!). I am always trying to find new ways to help inspire the chronic illness and IBD community to find confidence in themselves and their story. Connect with me if you want to partner for anything, set up a meeting, or even just talk to me!
Instagram and YouTube: @chronicallyillfluencer