Jeni's Story

My name is Jeni. My story is kind of unusual. I am a survivor and the child of a survivor of colon cancer...

When I was 6 years old, after several misdiagnosis, my mother was finally diagnosed with familial polyposis. She now has a stoma. She was told that once I reached puberty that I should start being tested for the same thing since it is hereditary. When I was 11 years old I started noticing blood in my stool and very painful bowel movements. As I had seen what my mother went through I was afraid to tell anyone about my problem (part of me knew I had it and thought that if I ignored it it would go away).

At age 13 I was admitted into the hospital for an unrelated problem. The day before I was to be released my mother told the Dr. that she wanted me tested. I was and the results were positive - I had polyps growing in my colon. The doctor also informed my mother that if I did not have one of two different surgeries I would not live to see 14.

My doctor (Dr. W. Bode) was my ANGEL. Even though I was only 13 years old, he suggested to my parents to leave the choice of the surgeries up to me so that I felt I had some control over the situation. I chose to have the J Pouch. As it was the beginning of the school year, it was decided that I would go have the surgery that summer and over the next 3 months until that time I would go into the hospital to have the polyps scraped out (yes, it is as painful as it sounds). Five weeks after my first scraping I was readmitted into the hospital again. Another test revealed that the polyps had grown back twice the amount, so from then on for the next 7 months, every month I went in for the scraping.

That summer was the first of two surgeries, the first giving me an temporary ostomy. I literally went into the hospital weighing 165 lbs and one month later walked out weighing only 95 lbs.

My second surgery took place three months later giving me the j pouch.

For years I had very low self esteem because of the scars that the surgeries left on my body but then at age 18, I met a man that looked at me and said, that to him, I was still beautiful and did not turn away when I told him that any child I had might very well have the same problem as I have. We were later married.

A couple of years later I was looking into the possibility of having children. I was informed that it was not a good idea and that it could kill me. One Dr even tested me and said that because of the surgery I would never have children. I then went back to my old Dr B for his advice he informed me of the pros and cons and what I needed to do if I were to become pregnant.

On February 16th 1997, through cesarian section, I delivered a baby girl. She was premature (by 1 month) and only weighed 5 lbs but in all aspects she was very healthy. The Dr that delivered her said that because of all the scar tissue I should not have been able to conceive and that now I needed to have a complete hysterectomy so as not to have anymore. Well, you know what I say... They said I couldn't have my lil' girl and God saw to it that I did and if I am meant to have another then so be it...Wait till after my next one is born then I will have the hysterectomy.

I have since found out through family that my grandfather, great aunt, and some others in my family have also had and died from the same thing I have.

Also a note about my surgery, apparently the surgery that was done on me when I was 13 is no longer being done on those with FAP because there have only been two success stories (me being one) in all of the patients. Up until very recently I have lived for 15 years without any problems but I fear that it is not so anymore for I am experiencing the same symptoms as before and am trying to find a Dr that specializes in my surgery in my area.

I will keep you informed. If anyone would like to contact me for any info I might have or would just like to talk please let me know, email me at mjwade@tabletoptelephone.com , desert_rose_72@hotmail.com or jmowade@hotmail.com. I am also on ICQ.

I would love to chat with others like myself.

UPDATE!

Well all here is the update.... on May 20th '02, to my wonder and joy after 8 months of waiting, God granted me with my new joy (a lil boy). When he was born the Dr informed me that it was now unadvisable to do a complete hysterectomy due to the fact that all the scar tissue had sealed my uterus and the j-pouch together.

Well After about 2 years of constant problems that would not subside I finally relented and in Dec '02 I went to see a new Dr. After several tests I have been informed that yes, the polyps (which have not turned cancerous at this point) have started growing back but that now they are not just in my large intestine but have begun in my small intestines, stomach, and throat, but because of where they are at they feel like it is unwise to remove them other than to go back to the scrapping procedure. This has done nothing to relieve the pain or stop the constant bleeding I have. It was also explained to me that yes the polyps can and most likely will turn to cancer. We are now in a waiting game. Until then I have to get scraped every 6 months.

I don't mean to sound foreboding about this at the time of my surgery(it was supposed to be the cure all), I was told that I would never have to worry about polyps again. Then 17 years later I find out they're back and the Doctors were wrong. I should have been going back to the doctor for check ups every year and it wouldn't have gotten as bad as it has.

So I guess what I am trying to say is if you have familial polyposis then PLEASE go back to your doctor every year even after you've been told not to worry!

As before if anyone has any questions or just wants to talk to a fellow j-poucher please contact me at jwade@tabletoptelephone.com (Honest I am not as foreboding as this update may sound).

Jeni

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