Patient Comments: Gardner's Syndrome - Share Your Experience

Have you been diagnosed with adenomatous polyposis? Please share your experience with Gardner's syndrome.

Comment from: suethom, 75 or over Female (Patient) Published: April 03

My father had Gardner's syndrome, and passed away at 60. I was diagnosed with it at age 21, had 3 benign tumors, and had semi-colectomy. Between age 21 and 42 I had millions of polyps removed. At age of 42 they were showing more rapid change, I chose to have an ileostomy, and thought I would live to my 50s or 60. I am now 75, and I feel great! My brother and 2 sisters older than me didn't have it. All are living good lives. My thanks to wonderful doctors. The doctors didn't know if I was starting or stopping Gardner's syndrome.

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Comment from: Steph, 45-54 Female (Patient) Published: November 07

I am from a family of Gardner's patients from my father's side. At 10 I started having semi-annual tests done, at 13 years of age they found many polyps, by 14 I had subtotal colectomy leaving only 9 inches of colon, and the colon removed was loaded with polyps. I got by until 23 when I needed an ileoanal anastomosis, J pouch. I had cauterization of adenomatous changes in tissue in Ampulla of Vater area needing a temporary pancreatic duct stent. After 25 years of having a J pouch, it failed due to scar tissue from chronic pouchitis and a pouch outlet obstruction requiring an ileostomy. I am still having annual EGD and bowel scopes, now through ileostomy. I have a strong family history of duodenal cancer and thyroid cancer. One of my relatives had a Whipple procedure for cancer, another had a Whipple prophylactically where I had only the cauterization done of the area. Close surveillance is the key.

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Comment from: Katie2010, 19-24 Female (Patient) Published: January 31

My mother passed on her Gardner's syndrome gene to me and one of my brothers. I got tested for the disease with the rest of my siblings at a young age. At the age of 13 I got my first colonoscopy. It showed only 2 or 3 polyps. Now, at 21, I have undergone my 5th colonoscopy and first endoscopy. The results showed around 100 polyps in my stomach, and about 100 more in my large intestine. Many were biopsied, and I am currently waiting for the pathology results. The doctor said we should begin to think about surgery.

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Comment from: IRENE, 65-74 Female (Patient) Published: February 20

I am one of five children who were diagnosed with Gardner"s Syndrome. At the age of 19 a colectomy was performed on myself and all of my siblings who were all under the age of 20. After 10 years it was decided that we should all have ileostomies. Sadly only two of the five children survived after a number of years. The eldest and the two youngest all died under the age of 38. Gardner"s syndrome was traced back to the female side of the family.

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Comment from: Katie, 25-34 Female (Patient) Published: June 19

I was diagnosed at 15 with Gardner's syndrome (GS). I'm just one of three to have it. My mom was one of five girls to be diagnosed. She and two of my aunts are surviving with ileostomies. I have a J-pouch.

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