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Adam's Story :
Back when Adam was 25 years old, Adam was diagnosed with Ulcerative Colitis, also known as UC. Ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis) is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly. It was treated with a myriad of medicines for years up until it was no longer under control and the medicinal resources had been expended.
Adam's first severe Flare-up of UC was in August of 2011. From then until now, he has been hospitalized to help treat the symptoms of his disease more times than we can remember. Come February 2015, we had exhausted our last medicinal options to treat his UC. Our next option was the complete removal of the large intestine. On March 18th of 2015, Adam had his large intestine removed and a J-Pouch surgery performed. He was very ill going into surgery and his immune system was down. He ended up with an infection at the connection site which made him septic. Luckily, he had been under the care of doctors from multiple specialties, heart, infection control, gatroenterology and nutrition. He went through a lot after that infection.
After over a year and a half of trying to treat a tenacious infection, his surgeon decided it was time to see another surgeon for a second opinion and possible entire J-pouch redo. We then came to the Cleveland Clinic and met Dr. Feza Remzi. He immediately knew what was causing Adam so much difficulty and was willing to help. The only condition was that he had accepted an offer for a job he could not refuse at NYU Langone. If we wanted the best surgeon in the World for this surgery, we would have to go to NYC. Adam and I knew there was no other choice for us to make. He would have the best and we would travel to The Big Apple for it.
So that is where we found ourselves in November of 2017. The Big Surgery: J-Pouch redo and in 8 weeks to return for the takedown of his ileostomy so he can live his life bag-free...but it didn't quite work out the way we had hoped and the second redo failed, along with the failure of another surgery where a new pouch had been created.
The infection would not heal, and eventually led to the permanent placement of an ileostomy. In June of 2020, we came back because the infection grew significantly and was limiting Adam's mobility and quality of daily life. Though we hoped to wait as long as possible, due to Covid-19, it became necessary to get to New York as soon as possible for yet another surgery.
In January of 2021, the abscess/sinus tract reappeared, but this time draining outside of the body. It was a huge blow. We are back here in July of 2021 to begin to fix it, this time with a multi-specialty surgical team including both colorectal and plastic surgeons. It has been brought to our attention that Adam's case is one of the most difficult ones they have ever seen, which is why this battle continues today.
Chronic illnesses, like this one, have a way of depleting the good energy out of you. We have felt it more times than we could ever have imagined. Today, we still see the future as a positive one. Life will eventually get back to normal. We're going to be stronger than ever when this has reached its end. We have each other and an abundance of love in our lives. That's Adam's story...and our story.
Thank you for being kind, compassionate, and supportive during this long journey.