Please welcome Shawn Bethea to the Living Well series!
Shawn suffers from Ulcerative Colitis and has lived with it for pretty much all her young life (she first started getting sick when she was around 11 years old).
As the years passed, she began to get more and more exhausted and started noticing more scary symptoms (like passing blood). She had difficulty keeping up with her classmates and felt very confused, scared and embarrassed so hid her symptoms for years. Eventually her symptoms became unbearable. She had frequent trips to the ER but nothing ever came of them. In her senior year of high school she was taken out of school more often which eventually led to her hospitalization at Levine Children’s Hospital, where she was finally diagnosed.
About Ulcerative Colitis
Ulcerative Colitis is an Inflammatory Bowel Disease that largely affects the Colon and Rectum. The immune system usually works to defend the body and fight against infection and things that try to cause the body harm. However, because Shawn is auto-immune, her immune system basically does the opposite. Instead, it attacks her body’s good cells, which in turn causes the inflammation in her Colon and Rectum.
Shawn’s symptoms are wide reaching include extreme abdominal pain and urgency, passing blood and mucus while using the restroom, Anaemia (due to the significant loss of blood), fatigue, frequent bathroom usage, severe dehydration, difficulty swallowing (the list goes on!).
Ulcerative Colitis is treatable but there is no cure.
Shawn’s life is impacted but not controlled by her illness
Suffering from such a life consuming condition can be very isolating. For a long time, Shawn tried to hide it, avoided friends, outings and social events for fear of being judged, not understood or getting sick.
She basically separated herself from the world.
Colitis became her life.
Life with her condition has been extremely hard. She’s had around 6 surgeries in total and has lived with an ileostomy (following removal of her colon) for 6 months. Before getting the ileostomy, she tried all sorts of diets, tests and procedures and, at one point, was taken off solid foods completely.
Now, her life has taken a complete 360. Since her last surgery, she lives such a better life. While her condition does still have major impacts (ie. she still has to manage her diet, takes medications, gets tired, etc), she has much more freedom than she did. She can now at least go out with friends more than she did. She can eat most of what she wants (just has to manage portions and avoid certain things like soups) but she usually chooses not to drink. She instead drinks a lot of water to help with… everything really!
Her life is much better now, it’s just all about finding a balance.Life is much better now, it’s just all about finding a balance. Click To Tweet
Today her illness still impacts her life a great deal, but she no longer allows it to control her life.
Shawn is also able to work nowadays since she doesn’t have as many appointments and surgeries as in the past. In the past, she managed working by taking it one day at a time. She had FMLA as support as well as a supportive employer. FMLA is the Family and Medical Leave Act in the US that gives eligible employees a certain amount of time out of work each year for certain eligible conditions and circumstances (with no threat to their job). There were several occasions where she needed to be off for months at a time but thanks to her benefits and the support of her employer it did not impact her job in any way.
Acceptance helps get you to a better place
Surgery has played a major part in Shawn’s progress. It’s helped her to get a handle on her life.
She’s learned to accept her condition which she now realizes is huge. Previously, she would skip medications or not follow treatment plans as advised. She’s now accepted that she has Ulcerative Colitis and she’s accepted that she does need to take medications to continue progressing.
She also tries to think positive, focusing on the good things in her day or what’s planned for the future. She’s found that stress causes flares and no one needs that!Stress causes flares and no one needs that! Click To Tweet
Shawn’s condition has taught her things she never imagined learning at such a young age. Through the surgeries and living with an Ostomy she’s learned what it really means to love herself and how to truly take care of herself.
More than that, she’s learned how strong she truly is!
Stay strong and never lose hope
Shawn would tell others with her condition (or any other condition in fact) to stay strong and don’t give up hope. She never imagined she could live the life she lives today. She never imagined she could have so much freedom and live with such little pain but it is possible. Just stay strong, find a good physician, a good support team, and learn what works for you!Stay strong and don’t give up hope. Click To Tweet
What the future holds?
Shawn is excited for her future. She hopes to continue her advocacy work in any way she can. She always looks for ways to improve and relishes opportunities to learn from other patients. She is also looking forward to finishing her degree and managing her own business while continuing to grow her blog.
Thanks so much Shawn for sharing your story. It’s so inspirational and fantastic that you are in such a better place.
To find out more about Shawn, check out her blog at MoreSpoons.com.
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