Hi Webmaster,

Please post on the web site under Support Group Heading.

I want to notify you that there is a regular CCFA J-Pouch Support Group that meets 4 times a year at UCLA. We meet the 2nd Saturday of the month in February, May, August & November at the Ronald Reagan UCLA Medical Center from 10:30 am to 12:30 pm. The address is 757 Westwood Blvd., Los Angeles, CA. I'm attaching the flyer for 2009. We also have a Yahoo support site to e-mail reminders. Here is the link:

http://health.groups.yahoo.com/group/J-PouchCCFALA/

This group is meant to supplement the j-pouch.org group. Please do post our information on the j-pouch.org website under the support group heading.

Thank you,
Marie Nilsson

I urge people to be very critical in evaluating information at this website.
My first interaction with the moderator today resulted in my being advised that, given my condition - a familial polyposis syndrome associated with two mutations of my MYH gene - that I might reconsider my scheduled IPAA-JPouch surgery and instead explore an ileostomy, as otherwise "you will still have your anus, which can still become cancerous. I'm not sure if an ileostomy isn't better due to that risk...You may have a 100% chance of getting cancer in your anus, in which case the ileostomy would be the way to go."

I have read in numerous places, including in yesterday's L.A. Times coverage of Farrah Fawcet's death, that "anal cancer is distinct from — and much less common than — colorectal cancer." I understand my condition places me at no greater risk of anal cancer than anybody else.

I hope there will be valuable support offered at the new support group advertised here, but I do caution people to be very discerning about what you may read there, based on my experience today.

~~ Frank in NC ~~

I would like to respond to this message to give a background as to where I am coming from. But first let me say that I meant to suggest a thorough exploration of options, and certainly not that I meant to give medical advice. I apologize that my response was taken the way it was.

In 2000 I had a colectomy where 90% of my large intestine was removed due to huge clusters of polyps, adenomas (pre-cancerous polyps) and hundreds of pseudopolyps. My UC had been under control with azulfidine. The surgeon felt the UC & polyps were 2 separate issues. In a weak moment I agreed to the 90% colectomy rather than the j-pouch. As it happened, the UC went into high gear after the colectomy and I went on stronger & stronger medicine. I actually suspected FAP (familial adenomous polyposis), but the GI doc said no, I didn't have it. Also discovered at the colectomy was a cirrhotic appearance of the liver. I suspected primary sclerosing cholangitis (PSC), but the GI doc said no, because this is so rare (I have since been diagnosed with PSC, among other things).

I became very fatigued and had more & more problems with the UC, so in 10/2005 I had the first of 2 j-pouch surgeries (the pull-through or takedown was in 1/2006). I had an ileostomy for 3 months between these 2 surgeries. I also wanted to get rid of the colon cancer risk by having the j-pouch surgery. After these surgeries, I went to the J-pouch support group in Orange county, and the surgeon there seemed sure I had FAP. But I still haven't been diagnosed with that from my own doctor. I know I grow polyps in more than just my large intestine. I also know there is a lot of cancer in my family, including leukemia, kidney, bone, colon, and bladder cancer). Anyway, I wanted to get rid of the colon cancer risk and the UC, so I had the j-pouch surgery.

The decision to have the colectomy in 2000 was about the hardest decision I've made in my life since I felt fine and I had always feared the need for someday having surgery on my colon. But my father's father died of colon cancer. My father's brother died of colon cancer. My mother's sister had just died of colon cancer a few months before my surgery, and I knew that colon cancer was a horrible way to die. My UCLA doctor said that I had a 20% chance of already having colon cancer. He said without the j-pouch or colectomy, I had a 100% chance of getting colon cancer. So I finally decided the colectomy was the only way to go. The later j-pouch surgery was a relatively easy decision. Had I actually been diagnosed with FAP, I'm not sure if I would have been told to have an ileostomy instead of a j-pouch - that is something I would have asked the surgeon and or GI doctor. Having had an ileostomy for 3 months, I can say I prefer the j-pouch.

Note that those of us with a j-pouch are still at risk for anal cancer, and we are told to get the j-pouch and anus checked annually for cancer. This check-up is easier than a sigmoidoscopy or colonoscopy. I'm not sure what the risk of getting anal cancer is - I just know what the recommendation is for screening, and I follow it. I think the risk of getting the cancer is fairly small, but it's still there. However, this risk is mentioned for those with UC, not necessarily with FAP.

Note that I have chronic pouchitis of the j-pouch, so I am on antibiotics all the time. If the antibiotics stop working, then I'll need to get the ileostomy. In fact, my GI doctor has already suggested that I do this, rather than be on antibiotics all the time. So far, I've decided to keep the j-pouch, and I think Dr. Sack would agree with this, but I'm not sure. But should the day come when I have to get the ileostomy, that is no doubt what I'll do, even though I'd rather not.

The Los Angeles J-Pouch support group is meant to be a live support group with a facilitator and a colorectal surgeon present who is the one with the expertise. The accompanying yahoo support group is meant to be used primarily to send reminders of upcoming meetings. Members can certainly ask questions as well, but there are probably better forums to use to ask questions.

-Marie

Anal cancer can happen with FAP. I'm not sure about after colon removal. But when I had my colon and rectum out, I was diagnosed with both colon and anal cancer. I have FAP.

I'm sorry to hear about your FAP and cancer. I've always read that there is a 100% chance of colon cancer when you have FAP. I know I need to get my j-pouch & anus checked for cancer again.

-Marie

HI. I AM NEW TO THE SITE AND I FOUND OUT IN 2005 THAT I HAVE FAP. I HAD A HORRIBLE TIME FOR THE 8 MONTHS THAT I WAS SICK WITH THE FAP(HEPTIC FLEXURE CANCER). THEY CAME IN AND TOLD ME THAT I HAD THIS FAP AFTER MY COLONOSCOPY AND THEY SAID THE ONLY TREATMENT WAS TO REMOVE MY COLON. I WAS TOLD AT FIRST THAT I WOULD WEAR A PERMENANT OSTOMY, THAT WAS FROM MY GI DOCTOR. WHEN THE SURGEON CAME IN HE SAID HE WAS REMOVING ONLY MY LARGE INTESTINE AND THAT HE WAS PUTTING UP AN ILEOSTOMY.HE SAID HE WANTED TO DO THE J POUCH BUT I WAS SO SICK HE DIDNT WANT TO KEEP ME IN SURGERY LONGER THAN HE HAD TO . SO THAT IS WHAT I HAD. I HAD THE REVERSAL AND I WAS CONNECTED TO MY RECTUM. I HAD 2 POLYPS AT THAT TIME IN MY RECTUM. AT MY REVERSAL SURGERY THE DR TOOK THOSE OUT. SO IN 4 YEARS TIME I HADNT DEVELOPED ANY POLYPS IN MY RECTUM. I WAS SO EXCITED. THE DR TOLD ME THAT KEEPING MY RECTUM WOULD ONLY BE TEMPORARY BECAUSE THE POLPYS WOULD START TO GROW AND SO ON. WELL 6 MONTHS AGO I HAD A SIGMOID AND I WAS STILL GOOD. NO POLYPS AT ALL. THE DR SAID IT LOOKED WONDERFUL. SO THEN I STARTED HAVING PAIN UP INSIDE MY RECTUM AFTER MY HERNIA SURGERIES AND I WENT TO ANOTHER GI DR AND HE WANTED TO CHECK MY STOMACH AND MY RECTUM AND FIND OUT WHAT WAS CAUSING MY PAIN. I WENT IN AND CAME OUT OF THE PROCEDURE AND RIGHT WHEN I WAS WAITING TO LEAVE I SEEN MY DR WALKING DOWN THE HALL WITH PICTURES IN HIS HAND AND I KNEW SUMTHING WAST RIGHT, HE FIRST SHOWED ME MY STOMACH PICTURES. I HAD HUNDREDS AND HUNDREDS OF STOMACH POLYPS. I HAD 3 OR SO POLYPS IN MY DEUDENUM. THEN AFTER HE EXPLAINED ALL OF THAT HE WENT ON TO THE NEXT PAGE. AS SOON AS HE SHOWED ME THE PICTURES I KNEW WHAT IT WAS. I COULD SEE POLYPS IN MY RECTUM. AT LEAST 20 OR MORE. SOME WERE HUGE. HE SAID ONE WAS THE SIZE OF A GOLFBALL. AT THAT TIME I KNEW I WAS GOING TO LOSE MY RECTUM. SO I WENT TO MY SURGEON IN UVA MEDICAL CENTER AND HE TOLD ME THAT HE DIDNT THINK HE COULD DO THE J POUCH ON ME FIRT BECAUSE OF MY WEIGHT. THEN HE WENT ON TO TELL ME THAT WITH THE POLYPS GROWING AS FAST AS THEY DID WITH ME THEN HE WASNT SURE IF THIS WOULD BE A GOOD IDEA. HE SAID THAT HE WOULD STILL HAVE TO GO IN MY POUCH AND LOOK IN THERE EVERY 6 MONTHS BUT HE SAID SOMETHING ABOUT LOOKING BEHIND OR ON THE SIDE OF THE POUCH.(NOT TO SURE WHAT HE MEANT BY THAT) AND THAT SOMETIMES POLYPS CAN GROW AND THE DRS CANT FIND IT AND IT WILL GROW INTO A CANCER. SOMTIMES IT ISNT FOUND IN TIME.SO THE ONLY WAY TO COMPLETELY DO AWAY WITH THE CANCER RISK IS TO HAVE ALL OF YOUR COLON , RECTUM, ANUS AND THE MUSCLES REMOVED PRETTY MUCH.I DIDNT MEAN TO RAMBLE ON. LOL. GOOD LUCK TO ALL OF YOU. BECKY

Hi Becky,

I'm so sorry about your FAP. I can't quite imagine what you are going through, even though one of my primary reasons for my j-pouch was fear of polyps and adenomas in my sigmoid & rectum. I had a colectomy in 2000 due to adenomas, and the j-pouch in 2005/2006 (2 surgeries).

Best of luck to you.