~OYC Trailblazers~ Mollie’s Story: Living la Vida Latina with Ulcerative Colitis & an Ostomy

By Mollie Tinnin

My journey with chronic illness began my senior year of high school after a violent assault left me hospitalized with life-threatening injuries. At the time, I received eight units of blood and during the treatment of the injuries I had sustained, the physicians discovered I had ulcers in my intestines. The treatment of both these injuries and my ulcerative colitis have been complicated in that they both are intertwined and affect each other even until this day. I’ve tried several medications, such as Mesalamine, but with the scar tissue and the ulcers both being in the same location, medication has not been very effective for me. Surgically, I started with a sigmoid resection about ten years ago and ultimately I received an ostomy last year, which was made permanent early this year by a completion proctectomy, when my rectum was removed.

During my completion proctectomy, my sacral nerves were damaged causing permanent urinary retention. Our bodies are so complex and one of the things I didn’t know until after my surgery is that the sacral nerves run directly lateral to the rectum and that about 30% of patients who undergo abdominal surgeries experience some sort of post-op urologic disruption. I’ve been told that while a permanent disruption isn’t common, it’s more common that one might think. That being said, treatment of urinary retention has really made a lot of advances and I’m in the process of getting a pacemaker of sorts at the base of my spine that should take the place of my sacral nerves and hopefully restore function to my bladder.

MY OSTOMY JOURNEY

When my ulcerative colitis flared a year and a half ago and I was told that an ostomy was my only option, I was really angry. I didn’t know anything about ostomies at the time except that it involved a bag on the outside of the body that collected bodily waste. Because of my lack of education and awareness, I thought it would be noticeable to everyone around me and that it would severely limit me in life. I had no idea how freeing it would actually turn out to be. My biggest fear going into surgery was that my ostomy would change me for the worst, but what didn’t occur to me is that that change would become a positive, life-altering force.

Mollie with hubby & Ollie the Ostomy Bear after surgery

When I first found out I needed an ostomy, I attempted suicide. I was involuntarily committed to a psychiatric hospital and while I was very angry and resentful at the time, I reflect back now and I’m honestly so grateful for my recovery and what I learned from that experience. Life without a chronic illness is hard enough but with a chronic illness, you get the added stressors of treatments and the cost of medical care. And it all gets to be too much sometimes. As difficult as it was to walk away from my family and career for a week to address my mental health, it was definitely necessary to take the time to just focus on my coping skills, my feelings and finding medications that help me cope with my emotions. I used to be so ashamed of my mental health history but in the last year, I’ve really started to open up about it. I think it’s so important to maintain an open dialogue about mental illness because I feel that it’s truly become an epidemic in our country.

MANAGING CHRONIC ILLNESS AS A LATINA

As a Hispanic woman, I feel fortunate that I was adopted into a Western culture because I don’t believe I would have gotten the care I needed otherwise. I’m grateful that I can now use that foundation along with my ethnic background as a platform to advocate for others in the Latino community who may not feel that they have a voice. When I think about barriers to healthcare in the Hispanic community, my first thoughts are the language barriers and the lack of health insurance but in reality, the barriers that the Latino community faces are very similar to those that our society as a whole faces.

The Hispanic culture places a great deal of value on family, specifically privacy and respect, which in my opinion, can become a huge barrier to care. This is because generally speaking, Latino families function as a unit in which they safeguard private issues, such as medical concerns, and utilize holistic home remedies to treat these health issues. And this cultural aspect of keeping it within the family and using complementary therapies can make it very difficult to seek medical attention when necessary. All this coupled with the language barriers and lack of insurance make it even harder to access medical treatment until things become an emergency.

WHAT COULD BE DONE DIFFERENTLY?

Also, there is a huge emphasis on respect of elders and family in my culture and I think this is where there is the biggest opportunity for healthcare professionals to make a difference. We, as patients, should have a seat on our treatment teams. We should be treated with a holistic approach instead of the current approach in which we are treated based on each specialty area with no communication between specialists. We alongside our caregivers/families deserve to be treated in a team setting with an emphasis on getting to know the patient as a person and not just as a diagnosis. We, along with our families, should have a say as to which treatment approaches might work best with our lifestyles, cultures, etc., and not just based on what that doctor specializes in or on what might be most convenient for them. There should be an involved discussion, a shared decision between doctors, patients and families. And I believe this kind of approach would also lead to a better quality of life for many patients because we will feel heard and empowered in the process, and that, in turn, could help to improve our mental health as well.

If there was one thing that I’d want to share with others facing similar health battles, it’s that there is a light at the end of the tunnel. At the end of the day, it’s our choice—we can either grow from our experiences or choose to remain despondent. I did not believe going into my treatments and surgeries that there would be life after illness and I’m so grateful that I was wrong. These experiences have shaped me into who I am and have clarified what I want from life. I was able to walk away from an industry I love to pursue an industry where I can make a difference and give back to those who so generously donated blood to save my life. Since then, I have become an advocate for the community, a member of Girls with Guts, a non-profit for women living with inflammatory bowel disease and ostomies, and a volunteer for Youth Rally, an organization that hosts kids and teens living with bowel and bladder conditions.

So, when Tina asked me how I own my ulcerative colitis, I said by believing in myself and by challenging myself every single day to do the things that society or my own depression told me I couldn’t do as an ostomate. And I can say with all honesty that life with chronic illness and an ostomy has been so much more fulfilling than the life I had been living before.