My Daughter, Honored Hero {The New Orleans Take Steps for Crohn’s & Colitis}

This story may be “TMI” for some people, but my goal in writing it is not to gross anybody out but to share something that is important to me and the families living with a condition known as IBD, or Inflammatory Bowel Disease. I assumed that when I was pregnant with my daughter, Makenna, she would be born a normal, healthy child. And I was blessed with just that. On July 25, 2006, I gave birth to my first child, a daughter, and I was instantly in love with her. She developed into an active baby that met all her milestones and brought us tremendous joy. So much so, that we decided to add two more kids to the mix and were living the life of a normal, happy family.

IMG_0888Soon after the birth of my third child, I noticed some blood in the toilet when Makenna used the bathroom. It wasn’t a lot but enough that it scared me and brought us into the pediatrician’s office on more than one occasion. After a few months of this, things went from confusing to scary. I looked into the toilet after my daughter used the bathroom and was shocked by what I saw. There was no way this amount of blood was “normal,” and she quickly made a turn for the worse. She started going multiple times a day, sometimes up to 20 times and all full of blood. We rushed back to the doctor’s office and after a colonoscopy, it was confirmed she had inflammation throughout her colon and that it resembled a condition called Ulcerative colitis. I was not familiar with this disease and was shocked when the doctor told me that she would likely be on medication for life.

Diagnosis :: Ulcerative Colitis

My pediatrician told me she had never seen this condition in someone so young. Usually Ulcerative colitis and its sister disease, Crohn’s Disease, appear in the second decade of life, not in a five year old. Both these diseases are collectively called Inflammatory Bowel Disease and can quite debilitating for somebody of any age. They cause stomach pain, bleeding, chronic diarrhea, anemia, stunted growth, and a myriad of other issues related to not properly absorbing food. But here we were with a diagnosis I had never even heard of and a daughter that just wasn’t getting better. We tried different types of medications that, on their own, were a band-aid at best. I eliminated foods from her diet that proved successful but was very challenging to stick with. Unfortunately, she ended up in the hospital needing fluids and a blood transfusion more than once.

Makenna stayed healthy for a few months before things began to go south again. The medications were IMG_1065not working and trying to continue with diet modifications was extremely taxing on the entire family. Just before Christmas of 2012, her condition worsened and she was admitted, once again, to the hospital for fluids and a blood transfusion. She wasn’t getting better; in fact, her health was deteriorating, and she ended up in ICU. I have never known such a feeling of helplessness and sadness. My strong, healthy girl looked thin and gaunt. She wasn’t allowed to eat for 10 days in order to rest her bowels and received her nutrition through an IV in her arm. She was also receiving high doses of IV steroids that didn’t seem to be helping at all. Even with these extreme treatments, there was still toilet bowls full of blood multiple times a day. Our options were slim. It was either try a medication that came with it’s own set of black box warnings or surgically remove her colon. I prayed for guidance and ultimately decided that if she wanted her colon out at some point in her life, that we wanted that to be a decision that she made and not one made for her. We moved forward with the medication, and thankfully, it turned out to be the best decision for us.

IMG_2061Makenna Today

Two years later, and Makenna is emotionally and physically strong, and she amazes me every day. She continues to take medication, and we stick to a strict diet most of the time, but it has allowed her to play sports, attend school, and just be a normal kid. Although, I wish I could take away this condition, her diagnosis has also brought positive changes to our family. We have met some awesome people, made changes toward a healthier lifestyle, and we never take a day for granted. We have also become involved with the Crohn’s and Colitis Foundation of America, an organization dedicated to raising awareness, providing research funds towards finding a cure, and organizing patient centered support programs.

New Orleans Take Steps for Crohn’s and Colitis

Take Steps for CrohnsThis year, Makenna was named the Take Steps Honored Hero for the annual New Orleans walk. The walk takes place Sunday, April 19 at Audubon Park. Last year, over $50,000 was raised, and this year, our goal is even higher. I feel strongly that a cure can be found within Makenna’s lifetime, and I have made a promise to her that I’ll do everything I can to make that happen. For more information about the walk or how you can help Makenna and the 1.4 million people like her, please visit their webiste or contact Robin Kingham at rkingham {at} ccfa {dot} org.

About Kristin

photo-9Kristin, a New Orleans native, is the mother to one daughter, Makenna, 8, and two sons, Julius, 6, and Adrian, 3. When she is not busy playing chauffeur, chef, playmate, or event planner for her three kids, she works as a Certified Pedorthist at Foot Solutions, a local comfort shoe store. She enjoys running, cooking, and reading and can’t imagine raising her kids anywhere but in the Crescent City and close to her and her husband Tim’s family.

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