So i am 17(18 in September)and have fap and i just recently(a week or so) got diagnosed with thyroid cancer and i dont know how the surgery will affect me- i have until the end of August to get the sugery per the doctors orders- they said i hopefully wont have to have a drain but still
+ care 1+ hugs1+ thanks0+ prayers0So confused about dr. asking me what I want to do when I do not understand my test results. I am supposed to know if I want to be referred to a specialist or wait another 6 months and have another EDG done. Most dr. in past just tell me what I need to do. Any knowledge of these results. I know The four fragments not good. Any suggestions welcome. Thanks
Microscopic Description
Sections through A show focal enterocyte atypia suspicious for adenom…Read more+ care 0+ hugs0+ thanks0+ prayers0I need support for my 11 old year old grandson diagnosed with FAP. I'm a single, retired woman, age 64, and his legal guardian. I have little support. I need help dealing with this diagnose and his care. Thank you kindly, Nadine Dias
860-886-0313:home and 860-884-7564 (cell).+ care 1+ hugs1+ thanks0+ prayers0My total colectomy, jpouch, and ileostomy bag surgery is next Thursday is there’s anything I should do right now to help prepare for it? Does anyone have any useful tips for this?
+ care 2+ hugs1+ thanks0+ prayers1+ care 2+ hugs1+ thanks0+ prayers1- Aussie45
you might want to testa bag out so you know what to expect - I did and it was helpful ...also tested the adhesives etc... so much easier if you know what to expect and what to do
Stay positive in all your thinking, relax and know that you are giving yourself the chance to live and be free again of your problems. May you have a safe and easy time of it -- and don't over do.... - Community Mgr.
Hi Lily- I hope recovery has been going smoothly! It takes time but every day, you get a little bit stronger. I am sure you now have a whole bunch of tips to share with future F.A.P.ers about to undergo this surgery.
Hello, randomly specific question. I had my colectomy about 9 years ago, and am doing well. I have gotten into surfing for the last two years, and I am surfing pretty much every day for an hour or two. I don't get board rash on my stomach, but I do get it over my scar (I have a "7 shaped" scar that goes up to my belly button and goes sideways towards where my ostomy used to be). I think my scar rash is happening because the scar is more de…Read more
+ care 1+ hugs0+ thanks0+ prayers0+ care 1+ hugs0+ thanks0+ prayers0- Community Mgr.
Any improvement? I can't say I've had a scar-related rash (although I believe I have keloid formation). Have you checked with a dermatologist? Fingers crossed you've found a solution as it's hard to imagine not being able to go surfing given your backdrop!
Thank you to the FAP community for your ongoing support. We are thrilled to introduce a new tool to help patients and caregivers find and connect to clinical trials. The Clincal Trial Finder can be found here for all FAP members: https://www.fapvoice.com/clinical-trial-finder/
+ care 3+ hugs0+ thanks2+ prayers0Hi there! I had a total colectomy 3 years ago. I’m still have issuing controlling my bowel movements... I am a nurse and it’s so tough to try to keep close to a bathroom while trying to care for others. What meds have worked for y’all to slow things down? I’m currently on Lomotil and Hycosamine but am starting to need more and more to have a normal day. Thank you!
+ care 3+ hugs1+ thanks0+ prayers0+ care 3+ hugs1+ thanks0+ prayers0- kiwidoc
Hello; Sorry to hear about the issues. My usual advice is to try liquid Imodium (loperamide) up to 2 to 4mg a half an hour prior to meals and at night. You can add lomotil to this at the same dose range.
A more satisfactory way might be to eat strategically...doing most of your eating when you are at home.
I am assuming that you have an ileorectal anastomosis. Bowel function after IRA is usually better than what you describe leading me to susp…Read more - Cheri
I have a j-pouch and had the same issue with lomotil, I'd need to take more to have the same affect. What ended up helping me is taking probiotics - give your digestive system more bacteria to break down your food and slow down your food digestion. It's not an overnight cure, it took me a month or so to greatly reduce lomotil. I take only a few a week depending on what I eat. I also eat foods that 'feed' my bacteria like fermented foods - kim…Read more
- Rubyinn
I have a J-Pouch since 2017 and I cannot take any of the recommended meds because I have a terrible reaction to codeine or anything related to it. So in my case, I have to control my bowel with probiotic and foods. I had to start with the BRAT diet and then work my way toward other foods. I found that if I increase my fiber (don't over due it), it makes a big difference. And over time, I have found what works and what doesn't for me; everyo…Read more
- + care 0+ hugs0+ thanks0+ prayers0
It’s been probably about a year since my last comment on here. Hello all, when I first found this site I was 15 years old, turning 16 in a month and having my complete colectomy in about 2 weeks. I was terrified. And I commented on this site acting strong and curious in what was to come. Honestly I was terrified, and after all my surgeries were done I was depressed. About a year ago I commented on here again being almost 18 I felt enough time h…Read more
+ care 17+ hugs5+ thanks4+ prayers2+ care 17+ hugs5+ thanks4+ prayers2- Cece
Hello Nic
You are absolutely amazing . Thanks for sharing your story and pictures you look so awsome. I am inspired by you.
Thank you🙋♀️❤🌹👏👏👏👏👏💪👊👍👍✌ - LifesaPolyp
You're doing awesome!!
- thomas.m.attard
You're awesome, you're inspiring, you give meaning to the lives and work of those of us who work with kids and young adults with FAP, stay strong
- Kirsten Sandoval
Thank you for sharing this, Nick. I'm going to share this with my 13 year old son and 18 year old daughter that have FAP and feel like nobody (outside of family) knows what they're going through. Thank you for honestly sharing your journey, through the ups and downs. You're an inspiration! Hope you have continued healing. 🙂
- Nick W.
Thank you! I continue to heal and grow stronger every day! I hope all the best for your kids. Remind them that life will go on, maybe not the classical way but it continues on🙂
I had j pouch surgery along with complete hysterectomy including both ovaries 14 months ago. I have a polyps that has engulfed the end of the ampulla in the duodenum, removing it will also involve removing a little of the ampulla and putting in temporary stints. I can't do the procedure now because I recently was put on blood thinners due to a 90 % blockage in an artery .my question is diet. To keep my bowels under control I do best eating eve…Read more
+ care 4+ hugs1+ thanks0+ prayers1+ care 4+ hugs1+ thanks0+ prayers1- Dan D
There are some great resources re: diet right on this platform! I did a quick global search (magnifying glass on the left navigation bar and the term "diet") and found several: https://www.fapvoice.com/rcuratenew/foods-ok-eat-j-pouch-surgery/
- LifesaPolyp
Since you tolerate meat, poultry can be cut up into small sizes that would be easy to eat on the go and be alright without being warmed up. There's pouches/cans of tuna, some even flavored that would be quick. Deli meat. Hard boiled eggs, egg salad sandwiches, tuna/chicken salad by itself or as a sandwich, baked egg cups, frittata, peanut butter
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Hi Nadine, I'm a physician involved with plenty of children with FAP, what kind of support do you need, I'm happy to set up a time to talk free of charge, and without going into case-specifics. My e-mail is tmattard@cmh.edu.
Hi Naydeen- Caring for someone with F.A.P. is absolutely stressful and you have found a great community to get support. I am a 31 year old living with F.A.P. and am happy to connect if you want to talk or not talk about dealing with this disease. Don't hesitate to reach out.