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Recently I underwent successful pancreas-sparing duodenectomy resection surgery at Stanford University Hospital.
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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…Read more+ care 1+ hugs1+ thanks0+ prayers0 -
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.
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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…Read more+ care 5+ hugs5+ thanks0+ prayers0 -
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.
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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
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My children’s book about fap is being published for rare disease day!
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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.htmlhttps://www.lifesapolyp.com/2021/09/the-unexpected-after-surgery.html+ care 2+ hugs1+ thanks0+ prayers0 -
Happy birthday to Carleton Myers who turned 95 today! He has FAP and 2 ostomies. His son helped me interview him for his birthday.
https://www.lifesapolyp.com/2021/06/turning-age-95-with-familial.html
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I have ileostomy done 3 yrs ago and the cancer has spread to my lungs and pelvic area. I am going for a higher dose of chemo using chemo iv pump starting next week as surgery is not an option now. Has anyone on chemo iv pump now? What is the reaction to your body?
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