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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 0+ hugs0+ thanks0+ 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?
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About 2 months ago I started to have pain, gas and feeling bloated. My pain starts out in my lower back and then comes around to my stomach and abdominal pain and then goes to my left side and up and down my back. Has anyone had this before? I am in a lot of pain and it seems to get worse when I eat. Also I have a appointment to talk to my GI doctor tomorrow afternoon on video chat and I am nervous about what she is going to say.
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So I have a question about what people use for procedure prep? As expected I have yearly flex sig procedures to check on my pouch and what is left of my small intestine. The prep I have been using involves 2 duxalox tablets 2 days before the procedure and then the day before drinking a 32 oz Gatorade with 7 capfuls of Mirilax in it. Following that with once more 32 oz Gatorade with the same on the day of the procedure. And of course clear li…Read more
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janhibbins107
Hi I would try putting the miralax in giner ale or sprite after drinking a little bit of the gatorade. I also start drinking miralax about 2 hours after I eat breakfast I find that if I started to drink it when my doctor told me to I would get sick to my stomach so at 10 o’clock I drink 20 ounces of miralax in sprite and usually by 3 or 4 o’clock in the afternoon I have finished the miralax. Hope this helps
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LifesaPolyp
I am NPO after midnight the day before my scopes. I don't have my colon and am missing part of my small intestine which causes me to have short bowel syndrome
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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
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So 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+ prayers0+ care 0+ hugs0+ thanks0+ prayers0-
janhibbins107
If I was you I would rather be referred to a specialist that way they can explain to you what is happening to you. Hope this helps
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My 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?
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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.
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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
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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!
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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/
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Hi 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!
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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
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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
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