I was working one day and I felt dizzy. I passed out and ended up in the hospital. Then my stomach and bowels shut down. I went through many doctors. Some said it was in my head. I was accused of being a drug seeker when I cried in real pain. I ended up being operated on many times. Unnecessary surgeries from uneducated physicians trying the quick fix. I was desperate for a cure when there isn't one. I ended up in icu many times with line infections from my picc lines and feeding tubes. I weighed 85lbs when God worked through a nurse at Baptist hospital named Jeanne to save my life. She gave me the name of a doctor who sent me to, "the Gastroparesis magician", Dr. Thomas Abell.
I saw Dr. Abell in 1995 and in 1998 had my gastric stomach stimulator placed. It got me off of a feeding tube after almost two and half years. It was truly a miracle moment for me. I met and saw many patients that were just like me! Dr. Abell was caring and actually listened to me. I ended up having a partial colectomy by Dr. Lahr in 2000 to fix the lower half. Both of these doctors were sent by God to help me and others like me. I truly believe that ! I am now 45 yrs old and have had a total of 45 stomach surgeries. I feel like I should have a zipper put in my stomach!!
Over the years I have struggled but nothing compared to hearing my daughter and son both had it. I felt like the breath was knocked out of my body each time. Raven was diagnosed at 12 and is now 22. She has had pacer surgery and a partial colectomy all by age 14. My son is 25 and is seeing Dr. Abell soon about a pacer. We all have GP from another rare unnamed disease that we all share. A mutation in our Chromosome ten that is being studied by Dr. Abell and Doctors in Sweden.
Now is the time to keep pushing awareness and advocating for research dollars. I, my Gp sisters and brothers, have been screaming for help for anyone who would care to listen. We have a difficult time getting sponsors or people to sign petitions or bills such as #HR2311 that would help those of us starving to death in a room full of food. We need to talk about what it's like to go to Christmas dinner or Thanksgiving and not be able to eat. Sometimes we can't go at all because the smell of food will make us sick. We can't go to restaurants and socialize. We can't go to the movies because many of us have to be near a restroom or we might vomit on someone accidentally. Many days we are incapacitated with pain from rotten food in our bellies. Some days we are constipated and in pain. We are lucky to have any good days at all.
Gastroparesis effects our relationships and friendships. Do people not understand that it is like having the flu 365 days of the year?? We are alienated and left alone to a monster of a disease with no cure and little research. It feels like a rat inside of my tummy and days with severe pain. Gastroparesis is not an illness that can be tied up with a pretty little bow. There are many diagnosis that come with it. I have lost MANY friends to this illness. That's why I have been advocating since 1995. We are seeing change but we MUST raise our voices as one. We must never be afraid to show the true face of GP. We deserve help and an #ALS moment for our cure. I am praying you have compassion towards our community and that many will #TakeABite4Gp for those of us who can't!
Will you consider joining Stacy's group at: My GP Monster
Join the Take a Bite 4 GP campaign Facebook group: Take A Bite 4 GP