I’ve decided to keep my ostomy bag for the rest of my life – here’s why

Maybe I’ve always been sick. Maybe no one knew.

Ever since I was an infant, I’ve been on elimination diets. I couldn’t breastfeed, I had a hard time digesting different foods at different points in my development, and I always had a running battle with weeks-long episodes of diarrhea and constipation. What was fine yesterday may have forced me to be bedridden tomorrow.

When I was 13, things really began to go downhill. I would get tired from the littlest activities (I was also a cheerleader, Young Marine, and a gymnast at the time, so I just assumed it was too much on my plate). I quit all of my extracurricular activities except for marching band. I stopped eating dairy in high school, thinking it would help. I tried a vegetarian diet, a sugar free diet, gluten free… nothing helped. In fact, I felt worse. I saw a doctor who brushed it all off. He refused to do any testing and just said it was Irritable bowel syndrome (IBS).

I developed bulimia when I was 16. I thought if I could have strict control over what went into my body and when, it would help. My abdomen would swell for no reason and I would look 9 months pregnant, so I’d starve myself until it went away. Every time, I’d have uncontrollable diarrhea that would keep me housebound for a week. I wasn’t eating, but stuff was surely coming out!

“I developed bulimia when I was 16”

In college, I was an Auxiliary Officer at Penn State University. I met a girl there who had Crohn’s disease. I didn’t know about Inflammatory bowel disease at the time, so I did some research and thought “Wow, if this girl can do police work and go to school full time with THAT, I can do it too with IBS!”

I graduated college when I turned 22. I started my first real job, working with kids, and I had to take long bathroom breaks every 1-2 hours.. so no field trips with them, no extended outings away from bathrooms… it was hard. But I didn’t know what else I could do – the doctor kept saying it was IBS!

I moved to a new state when I was 23 and started grad school online. One year later, I was sent to the hospital with uncontrollable vomiting and diarrhea – it was all water… for HOURS. No one knew what was wrong, so they sent me home. Two weeks later, I began to bleed. This was the beginning of the end of my life.

I got a referral from my new doctor to see a gastroenterologist. He did my first colonoscopy in January of 2015. He immediately saw that it was IBD and didn’t understand why I hadn’t gotten a diagnosis before. He started me on Asacol first, then Delzicol when my insurance said “No.” I went home and did as much research as I could on IBD treatments… the pills, steroids, chemo infusions, surgery… I was hopeful that the medicine he’d given me would work, so I was convinced that chemo was in the distant future and surgery was never going to happen.

“I felt like I was dying… and I was”

I was taken out of work in February on short term disability, after almost dropping a resident at the nursing home where I worked (I’d almost fainted during the transfer from her wheelchair to her bed). For the next three months, my Delzicol was raised to 16 pills a day. I was also on 80mg of prednisone a day… weighing 130 pounds, that’s a lot of steroid!! He insisted it was a mild case, and I fought him tooth and nail that it certainly wasn’t mild – I felt like I was dying… and I was. In March, I developed a c. diff infection as well. When every one of those medicines failed to make any difference by May, he started me on Remicaid infusions, kept me on the prednisone, and sent me on my way.

I returned to work, severely anemic, dehydrated, and fatigued. But I pushed through it. The Remicaid felt like it was helping. The c. diff came back the first week of July. I couldn’t make it to work anymore and my coworkers had enough of covering my shifts – one even told me “We’re done riding your pity train. No one cares about your bloody poops anymore. You’ve been claiming you’re sick long enough. No one is sick this long. We’re not covering for you anymore.” Two weeks later, I was hospitalized with the c. diff and uncontrollable blood loss. When I called my supervisor and told her I was admitted to the hospital, her response was “Uhmm, do you, like, have an illness or something?” I was furious… but I had no energy to be snarky so I said “Yeah, I do. I’ll call you when I’m out.”

I became septic and spent a total of two weeks in ICU. They tried Entyvio while I was there, as well as a bunch of other medicines I don’t even remember. I was hallucinating constantly, in so much pain I couldn’t stay conscious, and praying for death.

Then they admitted they could not help me any further. They sent me via ambulance to a hospital 90 miles away with a colorectal team for emergency surgery to remove my colon. The surgeon said my colon was in such bad condition, he wouldn’t have been able to tell it apart from cottage cheese. My surgery was August 13, 2015.

My stoma wouldn’t “wake up” after surgery. I began to vomit bile in large amounts, so they gave me a NG tube. I also developed a hematoma in my abdomen the size of a canteloupe, so they gave me a perc drain. When my stoma wouldn’t work for a week, they also gave me a pic line with TPN for nutrition. I had a catheter and a drain in my rectal stump because I lost my ability to walk. I was in that bed for 3 full weeks before my stoma began to work. I was sent to ICU twice in these three weeks. My mom thought I was going to leave the hospital in a body bag… no one thought I was coming home.

“The hospital staff taught me how to walk again”

The hospital staff taught me how to walk again… I walked like a toddler, grasping for things on either side of me for balance, when I didn’t get a walker. Eating was incredibly painful, so I refused food for the majority of the time. My hair fell out over the course of the next few months.

By the time I was discharged on September 12, I weighed 92 pounds. I hated my new life, I hated how much pain I was in, and I hated the fact that I still had a perc drain. The perc drain didn’t come out until almost Halloween. After that, though, everything started to turn around. The pain began to disappear. I started to become more comfortable physically and psychologically. I started to study for my grad school final exam again… my mom and best friend never left my side the entire time I was recovering, which helped SO MUCH. They came with me to every appointment I had. I was learning all new things from the doctors and support groups I’d found on facebook. Then I named my stoma… I think, at this point, the old me officially died. The new me emerged.

I decided I wanted to keep Stella instead of getting a j-pouch. Stella saved me. I would not be here without the amazing colorectal team in Rochester, but I wouldn’t be me without Stella. It’s crazy how much one year can totally change a person… This time last year, I’d lost all hope, thinking “IBD stole my life.” But it didn’t – it made it so much better, if you can believe that. I began to raise awareness for IBD and other invisible illnesses by starting my own support group and sharing pictures of Stella with friends and family. I am also in the process of writing a book, which definitely would not have happened without these experiences.

Don’t get me wrong – I still have secondary IBD symptoms. Stella didn’t “cure” me. If I was given another colon, my body would attack it the same as it did before. I still get canker sores when I’m stressed, I am still anemic, and I still have chronic fatigue and brain fog. But they’re manageable now.

Thanks to Stella, I got to see my best friend get married – I was her maid of honor! My other best friend is going to have my first godchild this month. I’ve made so many friends who understand the struggles of living with IBD, some have ostomies and some don’t. But we all support each other in ways no one else could and I am so grateful I have them in my life.

If I was asked a year and a half ago if I would have been happy with a permanent stoma (it became permanent June 27, 2016), I would have laughed in your face. Today, I wouldn’t have my life any other way.

So good bye, Felicia, RIP. 1989-2015.
Welcome, Leelo and Stella, 2015-?.

Words by Leelo Martin

Author: leelothespoonie

Suffered from IBD since age 13, but didn't get a diagnosis or treatment until I turned 25... 8 months after my diagnosis, after one failed treatment after another, my entire colon needed to be removed in emergency surgery. My life has been flipped upside down, the old Leelo is dead, and the new, stronger Leelo has been born. I am a warrior.

One thought

  1. What you’ve been through is truly amazing. The real miracle, however, is how you can treat a once so-called best friend like shit. Most people who go through an experience like you have end up being anything but a lying douche bag. Congratulations on lowering the bar!

    Like

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