I'm a 20 year old woman, recently diagnosed with Familial Adenomatous Polyposis (FAP). It runs in my mothers side of the family. I had a feeling I was positive for it for a while, but got my results back in March that, I do infact have the gene as well. It's been an difficult adjustment period and it's really hard for me to not just think of myself as a person with a disease, or tat i "basically have cancer". I'm a soon-to-be college graduate, so that's stressful already so when you throw FAP on top of all the other daily stresses I have, it's just really hard not to be completely overwhelmed. 
I got my first scope at the beginning of the month;Colonoscopy and a EGD.  I had an anxiety attack up until they knocked me out, I woke up during the EGD, and they had to drug me twice so i ended up super sick afterwards. They found plenty of polyps, and removed some for biopsies. I'm still waiting for my follow up appointment, but they said in my results that they're planning the surgery right now....and I'm so scared for that. I have no idea what to do, or expect. Even though most of my family has been through this, it all seems so new and terrifying now that it's me having to do this. This could change everything

Original Post

I’m sorry to learn of your recent diagnosis.  My FAP diagnosis was almost 40 years ago and I was one of the first to get a j pouch at Mayo Clinic.  Although I had some very stressful events in the years following my surgery, I came out OK in the end (pun not intended).  Even though I had to make some modifications in my lifestyle, I was able to fully participate in activities I enjoy, including alpine skiing in the Rockies, equestrian competitions, swimming and international travel.  I have had regular scope exams, both upper and lower, and am cancer free.

You are fortunate to have an early diagnosis and can be assured that there have been a number of improvements in j pouch surgery since it was first introduced.  Following surgery, you will experience a period of time while your body adapts to its new plumbing.  You will find numerous posts on this forum that address recovery from surgery and complications that *may* occur.  With FAP, it is essential that you have regular scope exams as recommended by your doctor.  Please feel free to send me a PM with any questions that you have and let us know how things are going.  Best of luck to you!


Hey Bill thanks for your words of encouragement. One of my bigger worries is that I'm a up and coming Aesthetician and my career requires me to stay in one spot for long periods of time and I don't really have the option to jump up and run to the bathroom if need be. .. so i guess that'll be fun to figure out. 

Hi Queen,

Or do I say " you highness"?

You are terrified and that is normal. You are also very young and at the beginning of your life so it is particularly frightening.

Surgery is scary for a rookie, even for an old hen like me who has done this dozens of times, I freak out as the date approaches. ..so vent, rant and let all of your fears out. 

Once you get past it and are on your way to healing you will feel more optimistic.  

I worked full time standing on my feet in a souvenir store (7 days/week!) while going to night school (for 7 years!!!) And other than really bad periods I was fine.

You will manage and prosper... most of us find a balance and go on to live perfectly (or imperfectly) normal lives.

You are alive, you will survive and you will be able to manage just fine.



Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.