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The Invisibility of UC
Jun 20, 2017
Hi peeps! A little about my story. I was diagnosed with ulcerative colitis in summer 2010 at age 19 (after over a year of misdiagnoses). I have gone through every FDA approved medication for the condition and I'm currently on Entyvio (IV) and Simponi (anti-TNF). Those are the biggies. I have tried medical cannabis which currently has not been helping unfortunately because it has helped in the past. I have taken every type of steroid I can think of, with side effects that were worse than the UC symptoms. Except the pain. The hardest part of this is the invisible pain that is impossible to explain to others.
These days I don't look unhealthy on the surface. I've regained color in my face, and my hair has stopped falling out. So the component of being unhealthy on the inside but to others, I look healthy; it has been very difficult. Inflammatory Bowel Diseases I think are the most invisible illnesses that I have come across. Even at my worst, I just looked exhausted and malnourished. Water weight caused swelling from all the meds and I was in pain all day and especially all night long. Thankfully things have improved slightly over the past few months, mainly thanks to Entyvio and some lifestyle/environment changes I have made.
I am hopeful for this new treatment option of a fecal transplant. I will post updates about it, hopefully starting soon!!