“I hope that if this is you, that you hold onto hope that things can get better.” – Amy story
I thought of myself in wildlife metaphors when I found out I had Crohn’s Disease. I felt like the weak antelope that natural selection should pick off. God said not so, I have ten or more years of pain ahead for you! I dragged my sorry self through my twenties to the age of twenty-five. I was in incontinence nappies leaking yellow fluid from a fistula by that point and any food I ate had me in a world of pain.
On Valentine’s Day I visited my local emergency ward and refused to eat again until they fixed me. I could not face the pain; I preferred to starve. I went three or so weeks on a glucose drip with no solid food and begged for an ostomy bag. They mercifully gave me a loop ileostomy, which is where your poop comes out a hole in your body into a bag. It looked horrific, but it worked. I felt like me again with that bag, like I could go places instead of just the nearest loo. I was married and had our son, however the injections (Humira) they had me on were paused in the third trimester of pregnancy and I wonder if that led me to go downhill. Who knew that even with an ostomy dealing with all the crap your dysfunctional colon still wants to torture you?
By my early thirties it was clear that the colon had to go. I had my colon, rectum and anus removed, with twelve stitches sewing me shut on the back end. It took a year to heal properly. The hardest part was the adhesions which kept resulting in extraordinarily painful bowel blockages. I was also grieving that this surgery might mean we were done having kids. I wasn’t done.
It was a miracle that I got pregnant again a year or so later. Our daughter was delivered by C-section because my bowel blocked up at 37 weeks and I was again barfing through an NG tube. They unhooked an adhesion through the caesarian opening, and from then until as I’m writing this my health has been good. My little girl is walking now.
I’m still here. I can’t believe I’m still here and I’m so thankful for my husband and my beautiful kids. I’m also so grateful for my surgeons, medical teams and good people around me. This illness has been like a rollercoaster through my worst nightmares, but today I am not in pain. I’m thankful that at my lowest God did not let me give up. There were many times I wanted to.
I hope they discover why young people like me are increasingly being afflicted with this humiliating illness. And I hope that if this is you, that you hold onto hope that things can get better. They have for me.
You can read Amy’s blog about here journey with Crohn’s disease here.