I am Gina Hulsaver. I was dx with UC at age 29 after i had gotten married. My son was 4 and I was thrown for a loop!
Some mild cramping, nausea, joint pain, D(today at 230am)
I have been dx for 7 years now. I started with asacol and canasa, which worked perfectly for 6 !/2 years. Then I had THE flare! The one that puts us all in the hospital! (only cause I tried to fight my symptoms for 1 year) During that 1 yr I drank wine, ate cheese, lived on ensure during symptoms. I lost almost 30lbs in under 3 weeks. I was put on tpn, and forced to get a chest port (portacath) to get remicade in the hospital. I was told my veins were bad…yeah they collapsed them all by using them to feed me tpn!!!! Talked about surgery said if the remicade didn’t help i would loose my colon and there was no gastro surgeon at this hospital so i would’ve ended up with a baggie for good. Wasn’t having that so I took the remicade every 8 weeks i go> Ive had 5 IV’s of it so far. Last night I was awoken with cramps sweaty and panicked knew i had to poo, yep it was d no blood though which is a plus for me. Have been eating crappy, pizza turkey jerky burgers cookies candy. I cant afford the Gluten Free diet i dont work for obvious reasons and we only have a budget of $100 a week for a family of 3.
Getting scared and frustrated how do poor people survive with body in tact???
Luckily I have a good Husband who hasn’t left yet, and a wonderful son who is very understanding and took on many chores of the house that have currently been dropped over the years. We just bought a new home in July very exciting! I was asked by a neighbor to put her son on the school bus which i was so happy to have a chore i thought i could handle, but today i feel awful and am scared to tell her after only 1 week i am feeling ill already! Its only morning for 1 hour so I might tough it out for as long as I can. I did explain my disease to her as i try to do with everyone, and with everyone because i look healthy thanks to covergirl and garnier fruictis (lol) I get the “yeah right you’re just lazy ” look. Remicade actually gave me hard formed poo, something i haven’t had in 6 years, its just times like today i get down and frustrated and scared, and the surgeons voice is in my head “youre gonna loose your colon, bags are not that bad” I do not want a baggies or surgery I want so bad to be normal again whatever that is! I just got my infusion on Friday, its Monday so i hope my body is just playing catch up. Of course the nurse who put in the I.V. said she got a blood return, oops lost oh got it again and hooked me up so i hope the meds actually went in the vein. Looked into the wheat free diet….EVERYTHING has wheat in it and we arent allowed fruits or veggies unless canned which have preservatives, everything has gluten, and gf stuff in the market is very exp. most of the time i just dont eat like today i had a half of bannanna….im getting very sick of those! Im still anemic cause iron gives me ….yes…cramps and d. the only person i know!!!
Where I’d like to be in 1 year:
written by Gina