-
Recently I underwent successful pancreas-sparing duodenectomy resection surgery at Stanford University Hospital.
+ care 4+ 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…Read more+ care 1+ hugs1+ thanks0+ prayers0+ care 1+ hugs1+ thanks0+ prayers0-
Tasha Manning
I love this! Thank you for sharing.
-
-
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+ care 1+ hugs0thanked1+ prayers0-
Aussie45
Personally I cannot imagine wanting traverse the original surgery. If I were you I'd have it brought back to a stoma and simplify your life. FAP causes enough issues to deal with. I am missing so much else and I give thanks for each day. I have to get hydration infusions weekly now and a use a drink called ROAR over ice that hydrates -- and keeps my kidneys alive. This past year has not been great due to thyroid and pancreas issues but those…Read more
-
-
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+ care 5+ hugs5+ thanks0+ prayers0-
teheller
Glad you're receiving better care! If you don't mind sharing, do you know which codon your mutation occurred? Our son is also de novo and we read that 1309 was the most common for de novo (which is where our son's mutation occurred). Thanks.
-
Heather Guy
I am 43 , my dad and his brothers and sisters and mother all have it, I am 1/4 children that has it. Only one of my dads sister is still alive. I had a standard colectomy at 18 prophylactically, I had thyroid cancer at 20 that was in lymph nodes, I have polyps everywhere in my stomach and finally got the duodenal adenoma under control with Celebrex 400mg 2xday (make sure they check your duodenum with ercp) I have enough to get by without a bag …Read more
-
Pav2uk
I was on same boat the only and first person in my family 22 years ago . Had total ileostomy and now whipple surgery due to Pancreatic cancer in 2019 I’m all clear x
-
Heather Guy
Yeah I’m tried to avoid a whipple my ercp is normal now. I eat Celebrex like candy basically and eat healthy and follow up blah……. Good to hear your doing well.
-
-
-
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+ care 1+ hugs0+ thanks1+ prayers0-
LifesaPolyp
-
LifesaPolyp
I tried to send the question through the contact us but it won't accept any of the anti robot codes I enter.
-
-
-
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+ care 4+ hugs1+ thanks0+ prayers0-
westcoast18
I understand that eating smaller meals may help and instead of 3 meals a day try 6 . May need to avoid sweets and or milk products. Keeping a journal of what you eat and what effects are for couple weeks might help to see if you need to tailor your eating habits. Protein power smoothies, dense meals like oatmeal,banana and peanut butter,noodles with Alfredo sauce, hard boiled eggs as examples. Might try nutritional supplements such as: Boost,Car…Read more
-
Aussie45
You need to find out the specific "best weight" range -- It allows two important things--- 1 - danger zone if you should get sick you won't have enough to support the illness. 2- the high end that is pushing the envelope of non safe weight in relation to the energy you need to expend to support the weight.
I am almost 8 years out and have been very pleased with this but I am now having major thyriod and electrolyte issues..
IF the foods d…Read more
-
-
My children’s book about fap is being published for rare disease day!
+ care 2+ hugs0+ thanks1+ prayers0 -
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
https://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
https://www.lifesapolyp.com/2021/06/turning-age-95-with-familial.html+ care 2+ hugs0+ thanks1+ prayers0 -
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?
+ care 3+ hugs0+ thanks1+ prayers1 - load more
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences.
More information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.