PJS Fighter
Hello all,
My name is Tonya and I am from Evansville, Indiana in the US. I am currently 27 and was diagnosed when I was three years old. I was actually at my first dentist visit and the dentist saw the freckles on my lips and told my parents that that was a sign of a colon disease. Back in 1993, my small town did not have many doctors so I was sent to an oncologist who knew nothing of the syndrome. The doctor told my parents to love me as long as they have me because I wouldn't be around very long. Obviously, PJS isn't a short term life span. My parents found the Cleveland Clinic, which is about a ten hour drive from my town. They have been amazing with my care.
I was five when I have my first intussusception and then another in my teenage years. I have since had two babies and the pain of my intussusception was far worse than contractions from giving birth. There is no true way to explain the feeling of an intussusception. Its like your guts are being ripped apart while there is something grabbing your stomach and squeezeing the life out of you.
I have had colonoscopies and EGDS every few years for polyp control maintaince. I typically have 11 - 20 polyps removed every two years. Along with my intussusception surgeries, I have also had what is called an open procedure which is where they cut through your abdmonial wall, about an 8 inch incision just like my other two surgeries, and make small cuts in your smalll intestine and invert it. Then they take out every polyp that they come across. I would not have this surgery again, even if my life depeneded on it. I spent 13 days in the hospital, had two code blues called, and many other issues. I ran a temperature and high heart rate. They state it was from anxiety, which who wounldn't be after sharing a hopsital room with a stranger and your husband ten hours away.
At the age of 23 I had my first mammogram. They found many areas of concern and had 4 breast biopsies. Three turned out to be cysts but one was a pre-cancerous tumor. Luckily, we caught it before it caught me. I had the tumor remove.
My husband and I spent the next year trying to get pregnant, even with the help of fertility treaments, we were having no luck. We switched doctors then to find out that I had a tumor in my uterous. I had a trans-vaginal surgery in which they removed the tumor. We had to wait three months before trying another round of fertility medicines and on our next try, we were pregnant. The tumor was bengin, thank God. We ended up being surprised with our second pregnancy only 6 months after the birth of our first.
So now, after being pregnant for so long, I will be having my first breast check up in July since my breast tumor was removed so please say a prayer that everything is clear.
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