Living Over a Decade with UC
Last updated: December 2022
I was first diagnosed with UC in 2012, but only after several years of a misdiagnosis of IBS did I consider this could be something far more. 10 years and 2 surgeries later I am still working towards understanding and managing my IBD symptoms.
The disease never seems quite the same.
Going from a bleeding colon, to an ostomy, to a j-pouch, you are forced to relearn your body’s needs and control how it poops! 10 years ago, as I lay in a hospital; scared, confused, and completely lost, I never fathomed my life would be transformed by my disease. I knew it would be difficult but I never imagined it would take hold of my life in so many destructive ways. I could never hold a job, I found myself completely bankrupt after so many hospitalizations and medications, and many times not having the proper care to take hold of my symptoms instead of them controlling me. It has been an arduous journey and there are many days I ask myself “Why me?” and other days, feel proud of all that I have accomplished. Besides, not many people can navigate the medical system the way I can after all I’ve had to endure on that front. I think a lot of you know exactly what I mean.
But I survived.
I have finally come out of my early recovery period after my recent ileostomy reversal surgery (4/28/2022). After a series of bowel inflammation, two bouts of C Diff, pancreatitis, and navigating a literal briefcase full of medications I am on my way to returning to the workplace and building my life back up.
You may have read a lot of studies lately about autoimmune diseases like IBD being linked to mental/emotional/physical trauma. As a survivor of childhood abuse and domestic violence, ulcerative colitis was inevitably the outcome and an additional battle I fought, alone, for over a decade of my life. I understand the struggle of feeling like all of these dark personal aspects of your life can make you interpret yourself as a complete outsider to society and for me those were the demons I fought practically all of my life.
Connecting with others who understand
I did find a way to open up and connect to people despite those parts of me. Finally, reaching the peak of acceptance for what my IBD means to me and how I can live with it has opened new channels and I am ready to be amongst others without fear of rejection. As much as I appreciate the people in my life, I am looking for communities of people with IBD who have gone through similar things I have so I can share these experiences with a fellow warrior! I have come to realize that I have so many questions that even my doctors can’t answer and besides, no one knows the experiences of IBD better than a person who lives with it! I am very glad I found this forum and I hope to discover more communities I can connect to as well. Thank you for having me.
What has been the most helpful for managing IBD symptoms?