Brooke's J-Pouch Journey

As many of you who will read this know, my name is Dawn. I am the mother of three wonderful and unique children! Each of them are beautiful (and handsome) and has a separate way of showing their love and passion to the world. They are my entire world and I love them more than I can describe!My oldest and first born is Brooke. She has always been the headstrong, independent type. Brooke was active and played sports her entire life throughout high school and four years of college. She was always exercising and was a beautiful dancer as well. She didn't get it from me, but Brooke would give anything to travel - anywhere. Sometimes she can be a little hard to understand, but that is what makes her such a joy to come to know. Once you know her true self, you immediately see the soft side. However, being soft does not overshadow her strength. In 2013, Brooke began to experience some odd gastrointestinal symptoms. We decided to visit a specialist and had some tests done. Within a month, she was diagnosed with the autoimmune disease Ulcerative Colitis. UC is a disease when the body's immune system attacks its own large intestine; the body attacks itself without mercy. At the time, while symptoms were less than desired, the disease was mild. She started her pill regimen including daily doses of prednisone and began to learn to live with the process. Her life changed, but it seemed manageable. About a year later, things worsened. Symptoms returned and her body turned against her. Weight loss, strong intestinal cramps, the inability to hold bowel movements, chronic fatigue and the list goes on. Brooke was admitted for a second time and without any answers we contacted our second specialist. We decided to switch from pills to an injection that she would self-administer every two weeks. The Humira along with the tapering off of the prednisone would hopefully stabilize things and be the answer. That hope was short-lived. Another year passed and Brooke ended up back in the hospital with another relentless flare. Down 20 pounds, painful and bloody and countless bowel movements, no leaving the house, joint pain and fatigue. After tests this go 'round, Brooke was diagnosed with what was now Pancolitis and a more severe diagnosis of her UC. The disease had spread to her entire colon. Ultimately, we reached out to our next and final specialist in Greenville, NC. He was very concerned and determined to help her which was a glimpse of hope for us all. His main goal was to relieve her of the long lasting effects of the steroid prednisone and control her symptoms with a new IV infusion named Entyvio. He began scheduling her infusions for every two months and tapering off the prednisone. He could tell the prednisone was taking its toll - joint weakness and pain, swollen face, easy bruising, compromised adrenal gland, etc. The symptoms all around were innumerable. For the year that we spent with her doctor, she seemed to be taking a turn for the better. Until March of 2017, when she had the familiar sense that her body was turning against her again. The less prednisone that was prescribed, the worse her symptoms appeared. Brooke made the brave and firm decision to ask for surgery. This was the only cure and she was begging for it. Her mind was so clear and certain that I had no choice but to trust her. This is what has led us to where we are today....I write "us" and "we" a lot, but it has been all "her." This summary of medical events does not begin to summarize everything that happened and went wrong in between the hospitalizations and moments of pain. Brooke worked extremely hard in school and work to prepare for what she thought her life would be. She was accepted into the Physician Assistant program at ECU in 2015. These events led her to be released from the program and make a decision that was extremely difficult to put her health first. Additionally, it has been a constant struggle for Brooke to find and keep a job that would account for her medical shortcomings. It was difficult for her to stand or move around for long periods of time. It was necessary to have an accessible bathroom at all locations and at all times - an aspect that is very hard for people to grasp the importance of. Not many jobs offer these things. Although she has struggled medically, academically and financially, I have heard her remind herself that it could always be worse. I know this is true but I have found it hard to believe myself when I have had to watch her suffer and push through so much - being poked and prodded, pumped with drugs, passed around from doctor to doctor, vomiting while having to use the bathroom at the same time until she can't stand up on her own, lose so much weight that I can see her bones, cry when she is scared that she can't attend an important event because of her sickly state. It has been unexplainable from a mother's perspective. I am a nurse and I have felt so helpless during her struggle. As I mentioned before, Brooke has always been a bit stubborn and headstrong - even when she was younger. I believe this character is a large part of why she has overcome this nasty disease. On May 22nd, Brooke underwent her first of (hopefully) two surgeries at UNC Chapel Hill. Her entire large intestine was removed and she was given a temporary ileostomy on her right side. She has adapted well to having the bag and, although it is not glamorous, it has been a life-changer. Two weeks ago, she experienced a painful bowel obstruction that led her to another week's stay at UNC and, yet, another stay's medical bill. It was resolved after painful enemas through her stoma and insertion of an NG tube through the nose. Despite the complication, without her colon Brooke is already maintaining weight, eating foods she could not before, traveling more and living day-to-day with nearly zero anxiety! However, we are praying that on July 27th her bag will be taken away and her small intestine will be connected again to give her another chance at life. It is a possibility that a third surgery may be needed if the second opening shows a connection site that is still too inflamed. She is excited and nervous, but I trust that everything will go smoothly. If for no other reason but that Brooke deserves it. It has been a long time since I experienced the Brooke that was confident and always making plans. I am excited to see where her new life and body will take her. As a mother, I could not pray for anything more. I am sharing Brooke's story to educate those who may have not known about Ulcerative Colitis or that she had to battle with this disease at all since she never broadcasted it very much. I believe that community, friends and family are important during trying times. I am asking for donations to help support Brooke in her recovery. She is currently unable to work for an income and I can see how she worries daily about how she will be able to afford these surgeries, her bills or day-to-day expenses. I want her to be focused on healing and be able to enjoy her second chance instead of worrying about something as materialistic as money; however, it remains a necessity. There is so much more to life and I hope everyone remembers to never take health and life for granted despite any situation. As Brooke says even after experiencing moments of frustration, "Things could always be worse." Brooke is now part of the #NoColonStillRollin team and I want her to keep "rolling" smoothly. Please help me help her! Thank you all!