acceptance,  advocacy,  awareness,  caregivers,  coping with flares,  hydration,  living with IBD,  Ulcerative Colitis

OYC Trailblazers: Celebrating Melissa’s J-Pouch-versary

And February’s OYC Trailblazer is…wait for it…Melissa “Mush” Willner! This month marks one year since Melissa had her ostomy reversed and her j-pouch became fully functional. So what better time than now to have Melissa share her story? Here goes nothing… 

Chris & Melissa

Ulcerative Colitis has been a part of my life for over 20 years now.  I first learned of my diagnosis at the age of 7 in the 2nd grade. While my young mind was preoccupied with stickers and Rugrats, I was also learning about colonoscopies and mesalamines. My sleepovers were interrupted by enemas and I took my first doses of mesalamine crushed up in my bowls of Cocoa Pebbles. 15 or so pills a day soon became standard for me. Nevertheless, I thrived at being a child.

When I was in the 4th grade, I experienced my first serious flare-up.  I was put on the infamous Prednisone.  I was gifted all of its most desirable side effects: moon face, frequent urination, a ravenous appetite, and significant bone loss. Nonetheless, Prednisone worked as did most of my medications for many years. I got through high school and college with manageable flare-ups. I remained unaware of just how ruthless IBD could be until the summer of 2016.

Melissa on Prednisone as a child

That summer was packed with exciting milestones.  I moved into my first apartment with my boyfriend, Chris. We adopted our puppy, Bucky, and I started my new job as a Mental Health Consultant. It was also the summer I experienced my most vicious flare-up. My new gastroenterologist started me on the well-known biological medication, Adalimumab. Unfortunately, I didn’t have the outcome shown in TV commercials where patients do so well that they can visit farmers’ markets and enjoy baguettes.

Chris, Bucky & Melissa

My symptoms exacerbated. I was using the bathroom 20+ times a day, primarily excreting blood rectally. I had frequent accidents and wore diapers to survive outside of my apartment. Eating became painful and I rapidly lost weight. My body was tired and beat down.  Nights were disturbed by bathroom visits and abdominal pain. I started to subsist on apple sauce and my mom’s chicken soup.

On March 23rd, 2017, I was sent to NY Presbyterian. After spending the day in the ER, I learned my colon (a/k/a large intestine) was crumbling inside of me. I spent that night on a hospital bed wedged against the wall of the ER hallway. For most of the evening, I was serenaded by the sound of a man detoxing across the hall. This was the first of 8 hospital stays that year.  Infliximab failed, a 9- day Cyclosporine infusion was unsuccessful, and I was diagnosed with medically refractory ulcerative colitis. My health continued to decline. Following a bout of thrush, fever, and relentless vomiting, I was informed that we had exhausted our options.

On July 25, 2017, I had my colon removed in what would be a 3-stage surgery over the course of the next 7 months. When I woke up from surgery, I whispered to my dad, “Is it gone?” And to my delight, it was. I had been gifted an ileostomy. At first it was hard to look at my stoma and overwhelming to clean and change my bag, but I adjusted well to being an ostomate and soon came to truly appreciate Chaim, my new stoma.

Even though my body radiated in surgical pain, I could see the sun was shining after what had been a very cloudy year. I remember looking into a full-length mirror soon after surgery and my reflection was unrecognizable. I think in that moment I truly realized that ulcerative colitis had been killing me. And to see that I was very much alive again after surgery left me with an excitement to join the world again colon-free.

After 3 fairly blissful months, I arrived at the hospital with Rachel Platten in my ears. Surgery #2 was not without complications.  My rectum was removed, and my j-pouch was created in what was a 7-hour ordeal. Immediately after discharge, I was rushed back to hospital with a bowel obstruction.

For the next 3 months, I became well-acquainted with the staff on the 14th floor of NY Presbyterian. The output from my new stoma was dangerously high. I suffered from severe dehydration. Walking was nearly impossible without alarming heart palpitations and loss of breath. I was being showered and dressed by my mother. My weight had dropped to 84 pounds. I was living on Ensure and 16 antidiarrheal pills a day. It was impossible to function unattached to IV fluids. Nevertheless, I was optimistic that surgery number #3 would improve my health.

Melissa with her siblings in the hospital

Initially, my j-pouch came to be known as Semore. But after my recovery, he became JP, a grumpy, irritable old man who had a mind of his own. I used humor to get through the hardest days back then and still reflect back trying to keep in mind how far I’ve come since then.

I am now about a year out of surgery number #3 and I am still learning to use and understand my J-pouch. J-pouch life is not without its challenges, but it’s my new lease on life and I’m certainly living it! I look at my scars when I need to remember to enjoy the air I’m breathing.

Melissa with friends after surgery

I am truly in a different place than I was prior to surgery. I feared “re-entering” the world after surgery. My focus was largely on getting well, and now the world has opened to me again. I’ve accepted my new “normal” and I’m grateful for having an army of family and friends who have supported me to become me again. There are no words for the love my parents have showered upon me.

Melissa & her family at the 2018 Take Steps Awards Party

Something I’ve come to realize in my journey with colitis is that everyone always seems concerned with “acquiring” happiness. But I’m discovering happiness in just being. Being alive and as healthy as I can be. So, when Tina asked me to share how I own my colitis, I said through humor, through taking in the simple joys in life and making them as magical as can be. And that’s the message I want to impart to all IBDers, especially children and teens: take in the love and support from family and friends and keep living your lives and being who you are despite this disease. <3

Melissa with family & friends at the Brooklyn Take Steps Walk in 2018. She was named the Honored Hero for Brooklyn in 2017.

~Love, light & peace always~

**I’d love to feature you on my page! So, if you’d like to share your story via OYC Trailblazers, please don’t hesitate to reach out. <3

Tina is a health advocate for patients living with chronic illnesses and disabilities. Via her writing, social media and public speaking engagements, she spearheads public health causes, including those creating awareness for inflammatory bowel disease (Crohn's & Colitis), life-saving ostomy surgery and initiatives supporting global women's and minorities' health. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance. She owns her chronic illnesses and disabilities and her goal is for you to as well!