Monday, June 16, 2008

A beginning

On June 4th, 2008 I was diagnosed with Familial adenomatous polyposis (FAP).   This is a really good site to learn more about the disease.  It is suppose to be an inherited disease, but I am the first in my family.  Lucky me, I'm a spontaneous mutation.  
I went in for a routine colonoscopy.  I had IBS like complaints accompanied by blood in the stool for many years.  Yes, yes, I've mentioned this to many doctors. All whom pretty much blew me off.  One even told me that is was not blood I was seeing in my stool, but spaghetti sauce.  How I'd like to run into that doctor now.  Anyways back to the story. . . my now wonderful GI discovered hundreds of polyps in my colon.  Since then I have also under gone an upper endoscopy, which discovered even more of these precancerous polyps in my duodenum.  (The duodenum is where the small intestines meet the stomach.)

At this point, the medical procedures we believe I will under go are:
  • A total colectomy with a temporary ileostomy.  During the surgery the entire colon and rectum are removed and a temporary ileostomy is made.  Also a J-pouch will be made using the last 8 inches of my small intestines. I will temporarily have a colostomy bag while the new plumbing heals.
  • Duodenectomy   This surgery will hopefully to be preformed at the same time as the colectomy.  It will remove polyps from doudenum.
  • The Take Down.  This surgery will be performed as soon as I heal from the 1st one (or two), probably 8-12 weeks (if I am lucky, and I think I am do for some luck).  They will remove the ileostomy, and I will begin using my new j-pouch.  The j-pouch will allow me to have stool movements from the anus like a normal person.  However, unlike a "normal person" I will have 8-10 watery movements per day with a few of those being at night.  Great.  
I still have a lot to learn and understand.  I will probably have four more doctor visits in the next two weeks.  A visit to a special GI, an office visit w/ the surgeon to perform duodenectomy, another office visit with the colo-rectal surgeon who will preform the colectomy, and another upper endoscopy/ultra sound to get a better look at the polyps.  

I'll update as I learn more.  This is enough for one day, besides I'm missing Weeds.  



Anonymous said...

Happy Birthday Steph: You made us "Proud Grandparents 29 years ago. Today that pride
for our grand daughter is even greater. Your courage, love and inspiration for others is unequaled. Your simply "The Best".

Our love and prayers are with you daily,


Pup & Mimi

Anonymous said...

You were always the brave little one from what I remember you as. Swimming laps underwater at the YMCA at the age of 2. You didn't use your arms though. You just held your arms straight at your sides, kicked like a dolphin, and steered with your head. It was just a blast watching you go!! Randy and I loved babysitting you long ago and we wish we could hang out with you now. It sounds like you have a pretty good idea of what lies ahead. So go get it done!!!We love you! Happy Birthday...package is in the mail...arrival Thursday. Love, Aunt Pam and Uncle Randy

Anonymous said...

Wow, you are such a strong cookie. If I had just an ounce of your courage I would be happy. I am glad to be able to hear what is happening daily since unfortunately I cannot be there daily. I want you to know that I am here for you all the time and any time. You have taken care of me and looked after me since before I can remember and I want you to know that I will do the same for you. I love you and know that if anyone could could handle this, it would be you. Think happy thoughts, like Nicki always says think about fuzzy pink bunny slippers and you will smile. Happy Bday again! Lots of Love, Jess oh and Bri Guy says, "Hi and happy birthday!"

Anonymous said...

You don't know me but I am a friend of your aunt Debbies. She sent my your blog add. Deb told me about you and and last week I called her to ask how you were doing, she told me about your blog then.
My name is Renae and my dad had colon cancer about15years ago. It was caugth early enough that it was able to be resectioned.
So I was very pro active about going and haveing a coonosopy. My oldest brother wouldn't go. So finaly I gave him the phone number to the Dr. and told him if he didn't make an appointment I was going to do it for him. He finaly went and it was not good. He passed a little over 3 yr ago.
I am a very out spoken person when it come to having a colonscopy.
I have other cancers in my family and tell people to get every thing checked.
Don't forget to laugh it's half the battel.and rembemer that there are people praying for you. Even if they don't know you personally. Keep the good fight.

Bonnie said...

Hi Steph,
You don't know me, but I was emailed your blog because I've set up a number of alerts through my Gmail account. I have FAP with extra colonic manifestations too, although I'm considerably older than you (53).
I'm not the first person in my family to inherit the mutation, but I AM the first to know the diagnosis.

Lisa said...

Hi Steph: you don't know me, but I wanted to give my support. I had a total colectomy with an ieal "s" pouch less than 2 years ago, I would be happy to chat with you and let you know my experience. My experience started with stage 4 endometriosis, and after a total hysterectomy,and appendectomy at 25, I have had 5 surgeries in 6 years now for my intestine, my large intestine stopped working, so had it removed, and it was heaven for 9 months. Then suddenly my world came crashing down as now my small intestine is barely working. I am in real trouble now. I am a photographer and have recently started a site something something positive. Maybe something to distract you for a few minutes if you want to check it out. You are in my thoughts. Happy to chat anytime. I know the courage it takes to live this kind of life. When you think you can't do it anymore...some how you just can. You can do it! :)
Cheers, Lisa

Chitown Meg said...

Hey there- Read your blog thru Beth's site (cmykgrl). I have ulcerative colitis. Check out my blog. I work for the CCFA. If you ever want to share stories I would love to!!!

Travis and Shawn said...


My wife and I have started a foundation, the F.A.P. Foundation, to support people with hereditary colon cancer disease. Yes, it is called the F.A.P. Foundation, because when I originally got the foundation incorporated, I had intended to just raise money to support F.A.P. research. But since then, our focus and direction, as well as the community we wish to support, has broadened.

That being said, the first item of business for us is to start a website compiling educational, financial, and social resources presently available, in addition to offering a social platform for patients and caregivers to connect.

We launched a fundraiser today on StartSomeGood to raise $10K to develop a robust patien caregiver portal. The link is:

I was wondering if you would share it on your blogsite. You can also check us out on Facebook:

and on Twitter (@fapfoundation). Finally, there is a video we produced for the fundraiser posted on YouTube:

Any help promoting the foundation and the fundraiser would be greatly appreciate. I am also available if you would like to chat about what we are doing at the F.A.P. Foundation.

You can email me, contact me through Facebook, or call me at 334-740-8657