Hi all... Thought I would check in and let you know that I made it thru surgery again... For those of you who do not know, or remember my last post a couple of...
Linda, All I can say is wow! You and your family have really been through it with this disease. I am glad that you are doing better and scared at the same ...
Steve, Where do you get your curcumin/Quercetin pills? I found tumeric and quercetin at the vitamin shoppe, but no curcumin and the quercetin is seperate. ...
Linda, Good to know a person can be around with this for 40 plus years. Sorry to hear it runs so strong in your family as well, though. I have dealt with this...
Darlene, The "curcumin/quercetin" pills that I take are only available through a doctor's office. The brand name that my doctor uses is BioVita Anti- ...
Darlene, I forgot to mention the pills that the Clevlenad Clinic gave me ... they are curcumin (500mg each) with quercetin, bromelain and papain ... and I...
Patrick........ When I was diagnosed there were only 7 other known families in the U.S. that were diagnosed... and me! It seems that I am a mutation! <grin>...
Thanks, Kathleen! All I can say is hang in there. Mother always told me that things could be worse so I have held on to that. Believe it or not, I have seen...
I have gardners syndrome and have been taking clinoril for 13 years with good enough results that I haven't had my colon removed. I have my next colonoscopy...
Hi Holly, What's clinoril and what's your current age? Sorry to hear about the pain from the accident. I think its normal to have pain from something like...
Hi Jon, I am pretty sure clinoril is another name for sulindac. And Holly - I thought I had already replied to this but I don't see my post - I must have...
Linda, I've still found new Drs. being 'intrigued' by this. Some still make me feel like a guinee pig, all new things to research. It can be so humorous at...
Patrick, I'd like to clarify something for you, just becuase you do or do not have CHRPE (Eye Pigment Issue) is no indication of whether you do or do not have...
Patrick, The eye pigments do not always show up in GS patients. I don't have them, nor does my daughter and grandson even tho both me and my daughter wears...
Hi, Sheila, yes, you're right, I take aclin instead of clinoril but it's all sulindac. Your post went to the desmoid group. :) As I said there, there is a lot...
I recently had my one year scope/check- up and some of the biospy results that came back from the ampulla (sp?) and duedeneom (sp?) had adenomas. I have...
Charlie, Bingo! You are right, because my family is that exact example. My brother has GS and the CHRPE; my sister has GS and the CHRPE; me <lol> has GS and...
Linda, One positive (if it is true), as I have read and been told this doesn't 'skip', so the Bro's being clear means the Nieces are. Did they do a jpouch on...
Charlie, I appreciate your 'chime'. I figured that to be true as well as read it in the past, but their father is 'clear' all around and I have read that this...
Romi, I am so sorry about you and all of us in this damn group. Short story: My brother, sister, son, 2 nieces and 1 nephew have this damn terrible weird ...
Romi, On the ulcer issue, they have been watching ulcers in my jpouch for about 6 years now (jpouch 12 years ago). They keep biopsying them but have found...
Patrick, I'm assuming by "clear" you mean that you've had the genetic testing and they found your mutation, then he had genetic testing and they didn't find...
Kathleen, In part, your surgeon was partially correct. The small intestine eventually begins to do some of the same functions the colon once did, however, it...
Romi, Part of why we must be very vigilant and watchful is because of this type of thing. Adenomas are Pre-Cancerous polyps and part of what makes FAP/GS...
Hi Patrick, Just wanted to clarify something. You say with the formation of a Jpouch all possibility of polyp reacurrance is gone. Unfortuneatly, this isn't ...
Linda and Patrick, Linda, glad you are doing well after surgery, sounds like you have been thru it also. Patrick, just to let you know you can live a long life...
Romi, I agree with Charles ( I think he was his post), the worst thing you can do is dwell on the subject, it doesn't do any good. Make sure you have your...
Hi Romi, Hang in there - it is a lot to absorb. I have only been diagnosed a year before you. Had a collectomy Oct 04, I have a large polyp at the ampulla, &...
