My first symptoms began to occur in April 2019 while I attended a close friend’s wedding. I did not think much of it at the time, as the symptoms/pains were not initially consistent. I chalked it up to eating or drinking an item that did not agree with me or the stress from wanting to start a family. It was not until I had started to lose significant weight over a couple of months span, leading to a scary, blackout moment. This would inevitably change my life as I knew it.
I had been to the E.R. two times between April and June, leading to a few follow-up appointments with a G.I. specialist, and was officially diagnosed with Ulcerative Colitis in June 2019. After being prescribed four or five different medications, none of which helped much aside from some brief pain relief. Others began to make comments about my weight loss, which I did not see at the time, but I was losing weight quickly and was fatigued almost every day. As I finished getting ready one morning in August, my husband Chris, came in to say goodbye before he left for a company golf outing. As he approached me, I felt woozy and unbalanced until I blacked out. Barely catching me before I hit my head on the tiled floor, he cradled me, shaking me, calling my name, and even though I could hear him, I could not respond. Chris picked me up, carried me to the car, and drove me to the E.R.
(Chris) Excited about my day of golf ahead, I went to kiss and say bye to Tina. Immediately, I could see something was wrong. Protection mode kicked in, and I ran to her, catching her as we both went to the ground. Not knowing exactly what she was experiencing or the effects of what was going on, I felt it best to drive her to the hospital. While driving, I am still trying to get Tina’s attention in hopes she will regain consciousness. I put a cold, wet washcloth on her neck and gained a glimpse here and there, enough that she was able to muster the strength to drink some Gatorade until we arrived.
As I am now sitting in the hospital bed, finally admitted after my third visit in six months, I realized that I was dealing with a serious problem. I had not shared many of the issues and feelings I had been enduring, both mentally and physically with Chris or anyone for that matter. I was scared and worried about sharing these things that were so invasive and personal, things I never imagined I would have to discuss with anyone else besides my doctor. Not knowing how I was going to come back from this or if I would ever feel “normal” again made me break down into tears. I finally told Chris and my family everything I was experiencing. As the pain-filled days dragged on, anxiety began to overwhelm me as it became evident that the doctors were just doing what they could to keep me comfortable as each day went by. On day four in the hospital, the lead doctor came in and said that they had done all they could at this time to help with the tools, tests, scans, etc. that they had used and conducted, and it would be necessary for me to be transferred to another hospital.
(Chris) I knew Tina had been dealing with stomach pains on and off again, I just never knew how bad it truly was consistently as she has a high pain tolerance. When she finally told me the extent of the pain and the symptoms she had been dealing with, I felt terrible that I did not pick up on things sooner so I could have tried to help in more productive ways. At this point, all that mattered was I would do whatever Tina needed from me to help, support and care for her as this was a journey we would both be living, albeit different paths, she would not be alone in her fight.
After a day and a half of sitting around waiting for my transfer paperwork to be finalized and a bed to become available I was moved to the University of Chicago. Upon arriving, I was very stressed knowing that we would be running more tests and hoping to help me feel better. However, the first nurse I met was so helpful, sincere, and sweet stating that they had the best doctors and most advanced research for those suffering from IBD. I was in great hands and would be just fine. I was finally able to breathe and feel the weight of all the stress leave my shoulders. I was given my own IBD team of doctors and students who were very thorough and brought me a sense of comfort. After a handful of days, I was put on new medications that allowed me to manage my symptoms and I was able to go home. I was finally able to sleep in my bed for the first time in eleven days.
While I was at the University of Chicago, the doctors established that I would need to be put on a biologic called Entyvio, and I would receive infusions every 8 weeks for the foreseeable future. The first concern that came upon me was, “Will I be able to get pregnant and start a family if I receive these infusions,” “If I do get pregnant, will I pass this disease onto my baby,” and “Will I go into a flare during my pregnancy/will being pregnant make my disease worse?”
(Chris) Thankful does not begin to describe my feelings for the University of Chicago doctors, as they were incredible in not only how they treated my wife, but also in how quickly they were able to help. Tina and I had many plans and wishes to have a family, and those plans quickly came into question. We were happily reassured that our plans did not have to change, but the path may be slightly different from the “traditional” expectations. Separately, the concern of passing this disease on to future children cannot be controlled, and this weighed very heavily on Tina. I knew that whatever decision she was most comfortable with, I would be there to support her.
I have been receiving Entyvio infusions since October 2019, and this has allowed me to live a “normal” life compared to that of my pre-diagnosis. Chris and I have participated in Take Steps since 2020, and both became volunteer board members in 2021, before stepping away in 2023. I am beyond thankful for the support that Take Steps, the volunteers, and all the doctors and nurses have provided me in my journey living with this disease. I also cannot thank my company enough, for their understanding and support, allowing me to take the time necessary to rest and recover before returning to work, while also making sure that I was compensated during that time so the stress of impending medical bills would not be so overwhelming. Most of all, I appreciate my husband, Chris, for all he has done for me throughout this journey, as we quickly were put to the test of our wedding vows, “in sickness and in health!” As of today, I am happy and proud to say we have welcomed two beautiful daughters, Shay and Leah, who have joined us in our fight to support Take Steps and the Crohn’s and Colitis Foundation so that one day a cure may be found!
(Chris) This journey of ours is not unique on the face of it for anyone who battles or cares for someone with Crohn’s or Ulcerative Colitis, but it has been unique in what our story has been. I am incredibly proud of Tina, in both her desire to raise awareness and funds for the foundation as well as her focus on keeping herself healthy and keeping me in the loop on changes to her health as they arise. As a supporter and caregiver, I have made it a focus of mine to not just care for Tina and her health but to also highlight Take Steps and the Crohn’s and Colitis Foundation. Whether it has been through everyday conversation, sharing social media posts, or fundraising, I take every opportunity I can to bring attention to the benefits offered to others like my wife by this foundation and its efforts. I finally had the opportunity to start my own team through my job in 2023, and in doing so, Tina and I were able to double the funds we raised in 2022. We are looking forward to this 2024 year, continuing our mission of support and awareness, and truly hope that our story will connect with others.
