How ostomy surgery gave Tina Aswani-Omprakash her life back and the impact these surgeries can have in IBD treatment.
Originally published on IBD Social Circle’s Blog
It is estimated that approximately three-quarters of Crohn’s disease patients and a third of ulcerative colitis patients will need surgery at some point or another in their disease journey. What’s often not discussed enough, though, is how many of those surgeries will lead to ostomies. So, what is an ostomy and how does it help patients with inflammatory bowel disease (IBD)? According to United Ostomy Associations of America (UOAA), ostomy surgery is a lifesaving procedure. It allows bodily waste to pass into a medical device known as an ostomy bag on the outside of the body via a surgically created stoma (a portion of the intestine protruding from the abdomen).
Colostomies and ileostomies can vary in location based on the location of the affected part of the colon.
So, why are stomas created in IBD and how do they help alleviate inflammation? Oftentimes, when there is severe inflammation and ulceration in the intestines that may not be easily salvaged with medications, it is recommended that patients undergo surgery to remove the diseased part of the intestine. Sometimes, in that process, it can be recommended that a patient receive a temporary stoma for several months to allow the intestines to heal properly before things can be reconnected.
For example, in patients with ulcerative colitis, it is often recommended that patients consider a 3-stage J-pouch surgery. A J-pouch is an ileoanal reservoir, meaning an internal pouch created from the small intestine in a J-shape that allows for the collection of stool. After the colon is removed, oftentimes a temporary stoma is placed so that the body can heal before J-pouch construction and defecation.
In other instances, a more permanent stoma is given to patients who may develop more complex disease (e.g., perianal fistulizing Crohn’s disease) where there is significant damage to the rectosigmoid region and there may be inordinate pain for the patient to defecate. A permanent stoma can also be a patient’s choice and doesn’t need to be a result of failure after failure of multiple medications in IBD. Remember, surgery is a treatment option and something to be discussed with your HCP and care team.
But the thing to note is that ostomy surgery is often viewed as taboo, which may automatically make it a last resort in the minds of many patients. Cultural factors and marriageability concerns can intensify the stigma against stomas. As a South Asian American woman, for instance, having ostomy surgery was so culturally taboo for me that I waited until it was an emergency to finally have the surgery. I was told nobody would marry me, and I was very afraid that I’d be discriminated against and that my family would lose respect in the community.
Life with an ostomy took some getting used to, but it certainly wasn’t the end of the world. I still remember waking up after emergency surgery in 2008 to this little red button-like creature on my abdomen moving about behind the ostomy bag. After I told my boyfriend (now husband) that the stoma looked like a Mr. Snuffleupagus, named after the Sesame Street character. Even though I was initially a bit scared of my stoma not knowing what to expect, I quickly adjusted. Cleaning it and putting a new device on it every 3-5 days became a ritual for me. So, when it came to reversal time, I began to grieve at the thought of losing my stoma (“Mr. Snuffleupagus”), which I associated with giving me life again.
Even as I had a J-pouch created and ostomy reversed, I developed inflammation in that ileoanal reservoir too that led to multiple complications known as fistulae, which are a debilitating aspect of inflammatory bowel disease, and led to my diagnosis being changed to Crohn’s disease from ulcerative colitis. While this was extraordinarily devastating, it did ultimately mean being reversed back to an ostomy again, which felt like a relief at the time.
I have had a few stomas over the years due to a variety of complications. But to my surprise, my ostomy didn’t just save my life—it made me feel alive again every single time I had surgery.
Since surgery, I feel more myself than I have in years. I got married, I can eat, I can travel, I can attend the weddings of loved ones. I can go swimming; I can take part in sports again. And most of all, I don’t have to rush to the bathroom and feel drained in doing so. I truly feel as though I have my life—and the real ‘me’—back again and better than ever.
And, in all of this, I learned that sometimes we must trust the process, trust the science, to eventually learn how to own our conditions. So, own your Crohn’s (or your colitis!), own your ostomy, and don’t let stigma prevent you from living your life on your own terms.
