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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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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
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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
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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.html
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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 1+ 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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