At 13 years old, my life started changing dramatically when anemia set in and I found myself falling asleep while sitting up, as well as becoming dangerously skinny despite eating normally. My mom took me to see a doctor to get checked out; his immediate conclusion: disordered eating.
My mom and I had always been close, and she knew I didn’t suffer from disordered eating; therefore she advocated for additional tests. After being referred to a gastroenterologist who ordered a colonoscopy test, it became evident: Crohn’s disease.
Some live with Crohn’s disease for years without knowing it; I consider myself extremely fortunate that my diagnosis came quickly. Yet this news wasn’t good: Crohn’s is an incurable disease with no cure; although there are several treatments and ways of managing symptoms, once someone has it they have it forever.
And I had an especially severe case. Every morning at an ungodly hour I would need to wake up early in order to release whatever accumulated inside of me – an effort which involved starving myself and not drinking water, in an effort to limit how often my body needed the bathroom; even then my body sometimes lost control, necessitating pads in my underwear as protection.
My condition worsened during my teens. Although I took various medications for relief, none proved effective; as a result, life became increasingly limited for me. Although some close friends knew about and accepted my illness (with humor!), getting through school days was never pleasant: thirst and hunger often ensued because if not avoided at the expense of bathroom use.
I received a special laminated pass from the nurse’s office that allowed me to use the bathroom at my leisure — an uncommon and beneficial perk; students could normally only leave class three times during each semester to use the restroom!
But my pass did nothing to address what was going on inside. My gut was an absolute mess and some days, rectal bleeding would force me out early from school.
After graduating high school in Chicago, I relocated to Michigan for college where life quickly turned for the worse. A feeding tube was implanted into my stomach but failed to heal correctly so blood and pus leaked out all over my clothes – prompting a visit to a doctor, who smelled my site but quickly dismissed me by saying, “It doesn’t smell infected”. Unfortunately I have met some extremely dismissive physicians since then.
Thanks to my campus health center nurses, they quickly recognized my staph infection and administered antibiotics as therapy.
But my illness had become too intense to manage and I wasn’t receiving adequate care in Michigan.
One local doctor suggested I return to Chicago in order to receive care, so I decided to drop out of college and return home so as to undergo ostomy surgery – an option always on the table but often left as a last resort owing to its intensity and serious nature – particularly among younger women due to scarring fallopian tubes or changing uterine position, which could affect fertility or worsen menstrual cramps.
But by then I was so ill, there really was no other choice than undergoing major surgery.
My large intestine, which no longer resembled its original organ form, was surgically removed. The end of my small intestine was routed through what’s known as a stoma; a red circle protruding half an inch out from my body that drains into an ostomy bag to collect waste.
After having surgery, my health immediately improved and I gained 30 pounds that were sorely needed, yet adapting to an ostomy bag took time and adjustment, both physically and emotionally. Ostomy bags are not often celebrated by society; most find the concept gross. While I understand having waste collected outside your body as strange, people unfamiliar with them seem to have vast misconceptions of them; many think they are bulky clear bags filled with waste that ooze around inside of you!
Ostomy bags may once have been bulky and cumbersome, but today they have shrunk significantly and flattened out considerably. You can now also get something known as a Stealth Belt to provide support and keep the bag snug against your body so that there is no sloshing and you can better conceal it beneath clothing – these belts even come in fun colors to make the experience more pleasant and build up my confidence! Overall they make this experience more comfortable while using one has helped build my self-esteem significantly!
Since my ostomy surgery nearly 15 years ago, I’ve fully accepted and embraced my ostomy bag as part of my body and am no longer ashamed to have one – no different from any other part.
Acceptance of my body has not been an easy path; my mom has been an invaluable ally and support from day one. Additionally, I am actively engaged with an amazing community comprised of other ostomy bag carriers who support one another while giving each other strength. In addition, I perform extensive advocacy work aimed at helping younger ostomy bag carriers connect socialize and have fun!
My ostomy bag hasn’t solved all my health issues related to Crohn’s, such as joint pain, fatigue and chronic anemia; for which I require regular iron infusions. Furthermore, I’m at a high risk for sepsis which could be fatal.
Life with Crohn’s disease can be trying and confusing; and ostomy bags may seem strange at first. With time and maturity comes understanding that they’re simply another means of going to the bathroom – I try my best to remain positive, grateful, and focused on giving back as best as I can.
I take great pride in caring for and cherishing my body, even with its many scars and deformities.
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