This post was inspired by the story I shared with the Crohn’s & Colitis Foundation of America’s call for IBD stories during IBD Awareness week, Dec. 1-7, 2017. By sharing my story, I can help make #IBDvisible, giving a face to these diseases.
I was diagnosed with ulcerative colitis in fall 2015.
That year I had put off tests and doctors’ visits, as I was uninsured at the time—but after months and months of bleeding, I was severely anemic, had lost a lot of weight and was going to the bathroom more than 10 times a day. I didn’t know it, but my life was in shambles. I felt totally unstable, as I was marginally employed and very stressed about finances. When I look back at photos from that time, I can’t believe I kept a smile on my face despite how much I was suffering.
After a multiple-day hospital visit and colonoscopy in 2015, my new-to-me GI doctor told me about my diagnosis. Flash forward to my most recent appointment that marked the year anniversary of that diagnosis. My doctor couldn’t believe it had only been one year. In that short time, I’d tried a host of medications, suffered the extreme side effects of steroids and withdrawal in an attempt to control inflammation and symptoms. I’d undergone a second colonoscopy, and together we decided to try a biologic, which, in tandem with an SCD-inspired diet and lifestyle, has helped me achieve remission.
Coming through this initial experience with UC has made me a stronger person, and it has dramatically changed my life. I realize what it means to really feel good. I’ve learned to be more patient, and to have faith in myself and my community. It’s enabled me to see how mentally resilient I can be; how gentle I need to be with my body (and mind); how important it is to practice healthy self-care; and that it’s OK to feel broken and vulnerable.
I realized the value of nutritious, cooked food, stress relief, and great sleep. I’ve built a good relationship with my doctor, which required a lot of trust, especially while on medications that could do damage—but also help me heal.
UC has shined a light on the most important people in my life, including my boyfriend, our families, and my closest friends, who support me through it all. Most importantly, having an invisible disease has helped me see and understand other people’s struggles and suffering, visible or not.
I accept that remission and flares may come and go. There may be bad days still, with slow progress and challenging decisions. But I try to move forward with confidence and an attempt at grace…especially when my family deals with me on prednisone!
I look forward to greater research on the potential and long-term effects of the newer IBD therapies, especially as they relate to women and gynecologic issues. I’m interested in seeing more studies about IBD connections with other immune-related illnesses, including alopecia, dermatitis and arthritis.
I encourage anyone with IBD, or any chronic condition, to find someone else with the disease to talk to. That’s one of the single best things I’ve done this last year—connect with the IBD community, through friends, acquaintances and online forums.
Relating to someone else, especially with a disease that affects the not-talked-about bowels, is incredibly helpful. It’s a relief to know I’m not the only one dealing with a gut disease that at times can rule my life.
I try to take initiative in my care. I strive to be assertive and inquisitive with my medical team and family. I acknowledge and let go of what may be beyond my control, and I carefully work to change what I can control.
Do research. Get support to try different approaches and think outside the box, especially about your lifestyle. The seemingly dramatic changes I made and rollercoaster of meds I tried were worth it. I believe I’m a different person because of UC, but overall, I think I’m a better person, too.