I have used this forum a lot over the last two years but I haven't posted anything. My family says I should talk about
my story, so I thought I would post it here.
I was diagnosed with ulcerative colitis shortly after I turned 25. Within a few weeks of my diagnosis my condition went from occasional pain and diarrhea to constant pain and 25-35 bowel movements a day. The antibiotic treatments for the UC gave me a bacterial infection called c diff. I went to a specialist in my area and began treatments, but they would only treat my c diff. or my UC at one time. This caused a 6 month period of constant inflammation and damage to my colon . Nothing was working for me until I was on Remicaid, but I continued to get c diff. infections every other month so I couldn't get a continual dose. I ended up going to OSF (Saint Francis) in Peoria, IL to be treated by a team. They treated both my UC and c diff. and they suggested a fecal transplant. A fecal transplant is essentially when they put other peoples stool in the colon of a sick person to balance out the bacteria. It sounds barbaric, but was effective for a few months. After 16 months of fighting UC I went in for my second fecal transplant, which promptly was deemed a failure.
I went into emergency surgery that week and they took out my entire colon and gave me a colostomy bag. In my mind I had lost. I lost my job, had to sell my house and live with my parents, ended my relationship with my long term gf, and I thought I would never be able to have a normal life again. We decided that I couldn't live with an ostomy, so I went in for two more surgeries to have a J-pouch created with my small intestine. I was hospitalized for 6 months off and on and underwent 2 surgeries to reconnect my bowel to my intestines. It has been the hardest year of my life.
I am still having some issues, but I can live a relatively normal life. I only go to the bathroom 3-6 times a day now, and I decide when to go. I in the process of getting my old job back, and planning for my future. I have put the rest of my savings into starting my own business, so I will always know I have a job waiting for me. I'm building a Family Fun Center in my home town.
I know UC is expensive. My meds were $30,000 a month just to keep me alive, and the year of my surgeries my insurance paid well over $1 million. This community has helped me keep my sanity in one of the worst times of my life. Share the story and know it is ok to talk about
it. The worse thing you can do is let the questions and anxiety build up inside and complicate an already unpleasant disease.
Thank you and God Bless!
Post Edited (mstrduff7) : 5/29/2018 7:17:10 AM (GMT-6)