CHRIS Sep 24 2022 3:40 pm
Does anyone have any post-op recommendations for APR (Barbie Butt) recovery?+ care 1+ hugs0thanked1+ prayers0
Recently I underwent successful pancreas-sparing duodenectomy resection surgery at Stanford University Hospital.+ care 3+ hugs2+ thanks0+ prayers0
Shortly after my AFAP diagnosis and successful total-proctocolectomy w/permanent ileostomy surgery I created an acronym for ADAPT: Attitude Determines the Ability for a Positive Transformation. My mindset is I tend not to think of things I'm unable to control, such as medical conditions. What I can control is my positive attitude and after five decades on God's green earth my positive attitude has brought me this far why change now.
Always For…+ care 1+ hugs1+ thanks0+ prayers0
CHRIS Jul 26 2022 11:19 pm
I had my colectomy with J pouch, temporary ileostomy for 6-8 weeks and then the ileostomy reversed in 2014. I’ve battled pouchitis for nearly 8 years. In the last year, I’m having severe anemia despite antibiotic treatment and iron infusions. Has anyone had their J pouch removed and went to a permanent ileostomy? Seeing my surgeon tomorrow for a consult to discuss options.+ care 1+ hugs0thanked1+ prayers0
Jaretta Jul 15 2022 4:53 pm
Hello I am new here. I am 40. I had my colon removed at 7 yrs old. I have a jpouch. I have always had polyps in my stomach, small intestine & jpouch. As an adult FAP continues to give me even more issues.
I had my thyroid removed in 2018 due to cancer related to FAP. Now I have a huge desmoid tumor in my breast which is related to FAP.
What’s so ironic is that I am the first person in my family to have this. I just seen a genetic dr here a…+ care 5+ hugs5+ thanks0+ prayers0
Honeybythelake Apr 16 2022 10:44 pm
I was looking through the RareCurate Places. Is there a way to add Mayo Clinic Jacksonville? I'd hate for people in the Southeast US to think they had to travel all the way to Minnesota.+ care 1+ hugs0+ thanks1+ prayers0
sullym Feb 17 2022 11:37 am
Hi just wondering if there is anyone on here who has had a total colectomy and total gastrectomy im 3 yrs post colectomy and 6 months post gastrectomy and finding it v hard to keep weight on would love some support pls+ care 4+ hugs1+ thanks0+ prayers0
LifesaPolyp Jan 30 2022 5:06 pm
My children’s book about fap is being published for rare disease day!+ care 2+ hugs0+ thanks1+ prayers0
LifesaPolyp Sep 27 2021 10:38 pm
I didn't think about FAP causing gall bladder cancer until I had my gall bladder removed this year
https://www.lifesapolyp.com/2021/09/the-unexpected-after-surgery.html+ care 2+ hugs1+ thanks0+ prayers0
LifesaPolyp Jun 16 2021 11:12 pm
Happy birthday to Carleton Myers who turned 95 today! He has FAP and 2 ostomies. His son helped me interview him for his birthday.+ care 2+ hugs0+ thanks1+ prayers0
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