I feel very honored to be a part of the Intense Intestines Foundation team and blog. I wanted to share the “About Marisa” part on here as well.
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Right before she was about to head to a national swim meet in Florida, Marisa was diagnosed with ulcerative colitis. At the age of 13, she never heard of the disease before and was extremely unprepared for the journey that was ahead of her. Having grown up an incredibly athletic, happy go lucky kid, who loved nothing more than to be out and about with friends and family, Marisa had no idea how much this diagnosis would impact every fiber of her being.
Marisa’s disease came on suddenly and with a vengeance. After two years of never really achieving any period of remission, being in and out of the hospital and trying a wide range of medications, Marisa underwent her first surgery to remove her entire large intestine. The following year and a half was spent dealing with numerous complications, infections, fistulas, abscesses, and at the end of it all left her with a permanent ileostomy.
Once the reality set in that the ileostomy was indeed permanent, Marisa did everything humanly possible to rid herself of the bag. She did a ton of research, called every doctor available, and pretty much spent every waking available moment doing everything she could to get her parents and surgeon to see that living with an ostomy forever was not feasible for a 16 year old girl. Marisa always maintained that at the end of the day, she needed to know she did everything she could before resorting to life as an ostomate.
After trying multiple and failed attempts to have a continent ileostomy (also known as a kock pouch, where there was no external appliance needed), Marisa finally gave in to living her life with a permanent ileostomy at the age of 24. The decision to end the fight against the bag was an extremely difficult one, but definitely the smartest thing she could have ever done. Having an ileostomy has made her health a lot more stable, giving her the ability to connect with fellow IBDers and ostomates, something she says has been truly “life changing” for her.
Marisa has now been focusing her advocacy efforts on showing those people who are battling Crohn’s disease and ulcerative colitis that they don’t have to go through this journey alone. She tries to depict the real picture of what life is like as an IBD/ostomy patient and acknowledges that she, too, struggles sometimes. But with the help of others in the community, loved ones, and a heck of a lot of inner strength and determination, Marisa feels as though we can help each other get through all of the emotional, physical and social challenges that come our way.