I have Crohn’s, and it caused two small fistulae, one of which never healed — so I know what an absolute horror it is to have a disease open up a hole in your body. When I first learned about the disease and what it could do, my naturally pessimistic mind was convinced that I would need a colostomy, and that scared me to death. Of course, millions (?) of people have had colostomy and they’re just fine, so I would have gotten used to it eventually, just like I got used to the permanent perineal fistula.
Perhaps what’s most shocking about your story is how young you were when it hit you. When I started getting Remicade in 2002, I rarely met young people at the infusion center…but as time went on, it became more and more common to encounter a woman in her early 20s — or even teens — or a man not even 30 years old. I can’t even imagine what it was like for you at 11 or 12.
Thanks for telling your story. Today, everyone I meet has a relative with Crohn’s, or at least knows someone who has it — but only those of us who have gone through the worst of it can truly appreciate how difficult it was for you and how courageous you have to be to tell your story and in doing so relive that suffering.