UC & IBS: “I felt like I was the only one dealing with this painful and embarrassing condition.”

Hello, Molly! Thank you so much for agreeing to share your story with the Carenity audience.

Could you start by sharing a bit about yourself? We'd love to know more about your background, interests, and hobbies.

I was born and raised in Vermont. After completing my undergraduate degree in Public Communication in 2011 I moved to Atlanta, GA and have lived here ever since. In 2016 I received my Master of Public Health degree in Healthcare Management and Policy. I have worked in healthcare or public health for the last decade and counting. In 2018 I created my advocacy platform Better Bellies by Molly to empower and educate IBD and IBS patients while advocating for health policy reform. I enjoy group fitness classes, dancing, being in nature, reading, traveling, and spending quality time with the people I love.  

Can you describe your journey with Ulcerative Colitis (UC) and Irritable Bowel Syndrome (IBS)? When did you first notice symptoms, and what led you to seek a diagnosis?

Not long after I moved to Atlanta I began having unpleasant GI symptoms such as gas, bloating, abdominal cramps, abdominal pain, fatigue, extreme bowel urgency, major increase in bowel frequency, fatigue, blood in my stool, and a general feeling of being unwell. Once I began bleeding when I pooped, I knew something was seriously wrong and went to my primary care doctor, who then referred me to a gastroenterologist. The first gastroenterologist I saw performed an unwelcomed rectal exam, curtly told me I needed a colonoscopy and promptly left the room. I had just moved to Atlanta and didn’t know anyone, therefore had no way to get a ride to a medical procedure on top of everything else I was feeling. I was sick, scared, and alone. I ended up flying back home to Vermont to have my first colonoscopy and then returning to Atlanta. Then I got the call that changed my life. The gastroenterologist that performed my colonoscopy called and told me I have ulcerative colitis, there is no cure, and that I would likely need to be on medication for the rest of my life. At age 23 this was terrifying, daunting, and at the time felt insurmountable. I then needed to find a gastroenterologist that would actually help me feel better and help me get my life back/find my new normal. It took a while but finally I found a Physician Assistant to help me start to feel better. After about a year living with ulcerative colitis and still having persistent GI symptoms that my provider didn’t think was due to my UC, I was then diagnosed with Irritable Bowel Syndrome (IBS). 

Ulcerative colitis (UC) is a type of inflammatory bowel disease (IBD) which is characterized by chronic inflammation of the digestive tract, specifically the colon/large intestine and rectum.

Irritable bowel syndrome (IBS) is a GI condition also impacting the large intestine/colon and is characterized by a group of symptoms with no visible change in the lining of the intestine. 

While these conditions share some symptoms, they are very different. 

Did you face difficulties in getting a proper diagnosis and treatment for your conditions? 

I received my diagnosis pretty quickly after I went to the doctor with a myriad of GI symptoms with an emphasis on bloody poop. Finding a healthcare provider to listen to me, take me seriously, not dismiss my feelings or symptoms, and help me feel hope for a healthier and happier future was a frustrating process. It took going to see several GI providers before I found “the one” that was a good fit for me. Once I established care with a provider I trusted I was able to focus on getting better and I still work closely with the same provider today. 

What treatments have you tried for managing UC and IBS? How effective have they been, and what side effects have you experienced?

I have tried many formulations of mesalamine in all forms (oral and rectal). I still take mesalamine orally, via enema, and suppositories. I have also tried various forms of budesonide, steroids, antibiotics, supplements, alternative/naturopathic medicines/supplements, vitamins, celery juice, many different diets amongst other things. What I have found the most helpful for me is a combination of medicine and lifestyle habits such as focusing on stress reduction, exercise/movement, balanced nutrition, ample rest, mental health support via therapy, dancing/doing things that bring me joy, connecting with people who support me, and always advocating for my health. 

The side effects I have experienced most have been gas, bloating, fatigue, and headaches.

How have UC and IBS affected your daily life and mental health? Could you share some of the physical and emotional challenges you’ve faced, and the strategies you use to cope with these challenges?

Life with UC and IBS impacts every aspect of life. Both of these conditions have a serious impact on both physical and mental health. The stress, anxiety, and depression that I have experienced due to feeling ill, fearing I won’t make it to the restroom, or simply trying to keep up is a constant challenge. Every day can be different as life with chronic GI conditions is a bit of a roller coaster. Some of the strategies I use to cope are focusing on: 

• stress management
• exercising/movement
• eating as balanced as possible
• getting ample rest
• mental health support via therapy
• taking walks
• enjoying nature when possible 
• dancing
• confiding/connecting with close friends/family/fellow patients

What are some common misconceptions about UC and IBS that you wish more people understood?

I don’t think the general population truly understands what it is like to live with either UC or IBS. I think they think it just involves pooping more and this lack of awareness can be detrimental to people living with either condition. I wish more people knew how these conditions can cause severe and intense bowel urgency leaving us patients with seconds or minutes to get to the toilet or else we will in fact have an accident. I wish bathroom access was better and compassion from broader society for things like experiencing urgent diarrhea was better than it is today. Part of why I began spreading awareness about these conditions was in hopes that people would become more compassionate and quit making fun of normal bodily functions such as farting and pooping and have more compassion for others when their bodies are ill. I want to live in a society that is understanding, compassionate, and supportive of people regardless of how their body functions. 

How important has the support from friends and family been during your healthcare journey? What advice would you give to others on how to support loved ones facing similar health challenges?

Support from friends and family has been priceless. There really aren’t even words to describe how helpful it has been. I have come a long way from being all alone in a city not knowing a soul to having quality friends I can rely on and an amazing husband who always has my back. The support my parents gave me at the very beginning is something I will never forget. Their support has never waivered I have just grown to be more independent and empowered in taking care of my health. The support from near and far makes me feel so thankful and grateful. 

My advice to others on how to support your loved ones is to learn about what they are going through by both researching and asking meaningful questions to the person you love. Try to be compassionate and understanding, and support them in the way they wish to be supported. 

You also found support and community through your Instagram page. How has connecting with others online influenced your journey with UC and IBS, and what kind of impact has your advocacy had on others?

When I was first diagnosed with UC I had never even heard of it before, so I certainly didn’t know anyone else that lived with it. At the time I felt like I was the only one dealing with this painful and embarrassing medical condition. I was too afraid to talk to anyone about it and could barely say, “ulcerative colitis,” without getting choked up. After living with my conditions for 6 years in isolation I created Better Bellies by Molly and began sharing my story on social media. I quickly realized I was not alone, and in fact am in really good company with amazing people all around the world being impacted by the same conditions. Between getting involved in leading in-person support groups and meeting other patients online I found community, understanding, compassion, and energy to help keep me going on my advocacy journey. 

Connecting with others, sharing tips, and advocating for change has helped me grow into the empowered patient I am today. I am proud to be a leader in the IBD and IBS space and am thankful I gained the courage to share some of the most vulnerable aspects of living with these conditions with the hope they will help the next patient. 

What are your hopes and aspirations for the future, both personally and for the wider community affected by UC and IBS?

I hope that we uncover a cure for GI conditions including UC and IBS but of course not limited to those alone. I also hope to continue advocating for health policy reform and to get legislation passed that puts the control back into the hands of the patients and providers for optimal patient outcomes. I hope we achieve greater health equity across all disease states. I hope for a more compassionate and understanding world that makes life with chronic GI conditions easier and less scary. I hope for improved treatments with less side effects. I hope for more research into alternative treatment options, the impact of IBD on the female body over the lifespan and for greater funding for all things IBD and IBS. 

Do you have any final words of advice or encouragement for others dealing with similar challenges?

• You are NOT alone.
• Get connected with other patients.
• Find your new normal.
• You can still have a healthy, happy, whole life with these conditions.
• Your diagnosis doesn’t define you.
• You are a warrior.
• Nobody knows your body better than you, so advocate for it.

A big thank you to Molly for this interview!

 Don’t forget to check out her Instagram page: @BetterBelliesByMolly

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Take care of yourself!