By Tina Aswani Omprakash, as told to Stephanie Watson
In 2005, I was fresh out of college and had just landed a prime job on Wall Street. My life should have been peaking. But inside, I felt decades older than my 21 years.
I’d had strange symptoms since I was about 8 years old — joint pain and eye issues that had no obvious cause. Now I was also getting bouts of digestive symptoms. I had acid reflux, and I bounced back and forth between constipation and diarrhea.
I went to my primary care doctor, who sent me a GI specialist. In June 2006, I was diagnosed with ulcerative colitis. Because the disease was only in one part of my colon, it didn’t meet the criteria for Crohn’s disease, which can occupy any part of the GI tract.
Working Myself Sick
I was working a high-pressure job with pretty extreme hours. The stress of my job was making me sicker and sicker.
I had constant diarrhea. I was bleeding. The only way I could eat was through a PICC line in my arm. By early 2008, I was down to just 85 pounds.
My disease had progressed to the point where I needed surgery. Without it, there was a good chance I’d die. I had emergency surgery to remove my colon on July 4, 2008, which left me with an ostomy bag on the outside of my body to collect waste.
It was a rough few years. I started to develop hard growths called nodules on my skin. I had eye issues and joint pain. Everything in my body hurt. At the end of 2011, I developed my first fistula — an abnormal tunnel between my rectum and vagina that was caused by inflammation.
My doctor told me they thought I actually had Crohn’s disease, not ulcerative colitis. For the next four years, I was in and out of surgery. I developed several more fistulas. One was so close to my spine that it threatened to paralyze me.
In the spring of 2015, my doctor put me into a clinical trial for a new biologic drug. It took several months to work, but it closed up my last fistula and put me into remission for the first time in 10 years.
Managing Crohn’s Disease on the Road
In 2016, I started volunteering with the Crohn’s & Colitis Foundation, co-facilitating their Women’s Support Group. That’s how I became an advocate. Over the years, I’ve learned a lot about my disease and how to manage it.
One of the hardest things about living with Crohn’s is the constant urge to have bowel movements. My doctors prescribed anti-diarrhea medicines, but I also discovered a few tricks on my own.
I found that sitting on a heating pad or in a warm sitz bath prevents the muscle contractions that give me that urgent need to go. When I ride in a car, I sit on a cushion to prevent the urge.
Another thing that has helped is deep breathing and meditation. I’ve had to do a lot of that to calm myself down. I find that constantly thinking about my disease makes it worse. Focusing on something else helps.
For a long time, I had such severe bathroom anxiety that I wouldn’t leave the house. I discovered that I could get out as long as I packed a bag in case of accidents. I wear a diaper and bring along extra diapers and underwear. I also carry baby wipes and cream to prevent irritation. And I locate the nearest bathroom at my destination and rest stops along the way before I leave.
I also carry snacks with me. Having to go to the bathroom constantly can leave you feeling hungry.
I sometimes travel to conferences around the country and overseas. I pack everything I think I could possibly need when I go. Because I had an ostomy, I need to carry a lot of extra supplies. I’ll make sure I have 2 weeks of medication. I always double the amount I’d normally need for the length of time I’m traveling. You never know when you might get stuck.
I also carry a letter explaining that I have an ostomy device. It helps when I have to go through airport security.
Getting My Health Back
Twenty surgeries and a few near-death experiences later, I’ve finally been able to get some semblance of my life back. I’m working toward my Master of Public Health degree.
My Crohn’s disease seems to be in remission. Although my health still isn’t perfect, it’s much better than it was. Over the last 15 years, I’ve learned a lot from having IBD. Most of all, I’ve learned that you can’t take a day of life — or a day of health — for granted.