My journey started 2 1/2 years ago. I was diagnosed with an extremely rare medical condition known as MUTYH-Associated Polyposis. It is a recessive gene malformation that puts me at a high risk for various cancers including colon, esophageal, gastric, duodenal, thyroid, kidney, and ovarian. MAP roughly affects .02% of the general population.
After 2 years of managing an overwhelming number of colon polyps, mostly adenomas, I elected to have a Subtotal Colectomy in January 2018. 10 days post op, I returned to surgery for a leak. This surgery required me to have a jejunostomy in place. Within a month of that surgery, I started exhibiting symptoms of a Recto Vaginal Fistula. Testing confirmed my worst nightmare.
Since February 2018, I have been on endless rounds of antibiotics, TPN, (Total Parenteral Nutrition) and daily infusions of fluids. I stopped taking TPN because it is too expensive. Now I just have daily infusions of fluids.
Managing the jejunostomy is nearly impossible. Everything I eat and drink generally is “out” within 10 minutes. Staying hydrated and nourished is a battle. My absorption problems are difficult even when I get hungry and thirsty. I am now losing at least 10 pounds a month.
I will be going to Cleveland Clinic for another surgery in December. Dr Kessler is hopeful that he can repair the fistula and redo my initial rectal anastomosis. He also is going to “try” to give me a regular ileostomy so that I can absorb nutrients.
I have health insurance. However, I am responsible for 30% of the cost of treatment through Infusion Solutions and Cleveland Clinic. At this point, I cannot even make payment arrangements.
I am currently working. It is with great difficulty to stay healthy enough to do so. However, I am a fighter and I am trying very hard to continue.
So...... I very much appreciate prayers. This battle is far from over. If you can donate, God Bless you.
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