Remission is the goal for anyone diagnosed with IBD. The journey to achieve it, however, is long and winding. The first milestone for those with IBD is getting the diagnosis (another long and winding road; and a story all unto itself). The harsh reality of an IBD diagnosis sets in with the words, “there is no cure.” Enough said, onto mission-remission. The road to remission is marked by things like steroids, 6-MPs, biologics, surgeries, and more.
For our gutsy kid, remission finally came 18 months after diagnosis by starting Remicade infusions. Deciding to use this drug on our daughter was trying but necessary. No longer could we bear to see her so fatigued – at times she could not stand – or clinching her stomach in severe pain. Nor could we allow her to live in fear of bathroom accidents at school. We did not want her to endure another round of oral steroids or have another hospital stay. Asacol and Azithioprine only brought brief respite. What’s a parent to do?
With Ulcerative Colitis, every day she is sick is another day her colon becomes damaged; each day she is sick increases the chance of her colon needing to be removed. So Remicade it is. The agony of the decision and the stress of the first infusion led to exhaustion, for me anyway. But for our gutsy kid, she gained a new lease on life. The very next day she was energetic and happy. Out of the blue she exclaimed, “I feel so good!”. I asked her, “When was the last time you felt this good?” She paused, reflecting deeply for a moment, and responded, “Since 3rd grade.” At this time she was in 6th grade.
Our gutsy kid spent three years in pain and lost three years of her young life to suffering – mostly in silence. Even through her pain and suffering she strove to be all that she could be; competing in equestrian sports, participating in school sports, never complaining and seeking normalcy at all costs. We are proud of her bravery. We admire her tenacity. We are grateful to her medial team for giving her childhood back to her.
How many gutsy kids spend too much of their lives suffering in silence because of IBD? Too many. Thanks to the ImproveCareNow Network and the participating care centers like ours, more kids can achieve remission sooner and get back to the business of simply being kids.