This week’s post is written by the lovely Danette Ray. Thank you, Danette for your contribution and for sharing your story!!!
My gut story is a very interesting one. I am a pastor of a very wonderful church in Philadelphia, the proud mother of four wonderful and educated children, the grandmother of three, the oldest daughter, a friend, a sister, and a fighter of IBD. In 2012 while preparing to graduate from college is when my journey began at the age of 49.
I knew I was healthy never sick, never get colds while everyone is always coughing and sneezing around no not me. As a pastor I was always visiting someone in the hospital, praying for someone to be healed, but me a picture of health so I thought. I only shopped at whole foods honestly the only market of my choice because I couldn’t eat from anywhere, very picky about my food choices, herbs and probiotics. I thought I was investing in my health properly and I was.
As I approached fifty in the month of October 2012 one of my closest members of my church in her forties died of cancer. Her and I were very close she helped publish my first book and very artistic like the Colitis Ninja. I started going to the bathroom a lot and not able to hold food. I thought it was the stress of her passing, concerned I thought it was something minor. In December I had a fiftieth birthday celebration but was afraid to eat at the party. I weighed in December 124 pounds but by the end of January I had lost 20 pounds then in February more and I kept declining in my weight, oh and then the bathroom visits were excruciating. I could not eat anything not even brushing my teeth without the toothpaste feeling like it was tearing my belly apart. Doctor visit after doctor visit, oh your anemic, you have hemorrhoids. I went to my nose and throat doctor because my face hurt all the time. The eye doctors because my eyes stayed red and were painful, neurologist because my head hurt all the time. It was crazy. Nothing’s wrong, everyone said. I could barley walk by the end of February because I had become so malnourished that it hurt to walk on the bottom of my feet.
Finally I ended up in the hospital, and of course they could not find anything wrong, the many hospital stays still the rapid weight loss nothing. My daughter and I started looking on the internet researching my symptoms and found ulcerative colitis, I said I think I have this. Once again being rushed in an ambulance back to the doctors I tell them I think I have ulcerative colitis, the bathroom trips, the bleeding, not being able to eat the joint pain everything, they said, “You’re too old to get that. It usually does not start at your age.”
They recommended a colonoscopy that I had out patient it wiped me out getting to the clinic in time because I was dying and did not know. My body had went crazy from the prep and quickly I was gray, my heart rate was plunging and my body was getting ice cold, they wrapped me like a mummy and just my eyes and mouth and nose were out, my mother was praying, “Lord take me not her!” I was numb. I was rushed again to the hospital they found I did have ulcerative colitis and then next portion of the story begins.
Medications worked temporarily a year later my colon burst, my body was septic and the doctors said if we don’t get your colon out you will be dead in three hours. I argued for them to fix my colon not to take it but when I woke from surgery it was gone. The surgeon said it looked like it had been diseased for 20 years.
This year is the first since this began that I have been more active, I still have more surgery not eager, but hey, what’s a girl to do?! I’m grateful to be alive, I’m grateful for the guts to keep fighting IBD and I pray for a cure. I don’t know your gut story but for everyone who fights IBD we definitely all have one.