FAP - multiple polyposis

kickerrn

I am a 38 yr old woman who was diagnosed with colorectal cancer last dec. It appears I have a FAP - which appears to be the first in my family. I had pre-op radiation & then had a total colectomy and protectomy with the formation of a permanent ileostomy. I am now undergoing chemo. Anyone else out there with FAP?
Barb

mrslacsr

I am a 36 year old woman who at the age of 12 had part of colon removed for FAP. I have just been diagnosed with rectal cancer in Jan.02. I have had chemo and radiation to shrink the tumor . I am currently waiting to get my strength and weight back up so that they can do a CT Scan and then I will talk to my doctors' about surgery. I am very afaid because they have already told me that I have to have a complete colostomy and I don't know what to do or how to handle this news!

kickerrn

mrslacsr said:

I am a 36 year old woman who at the age of 12 had part of colon removed for FAP. I have just been diagnosed with rectal cancer in Jan.02. I have had chemo and radiation to shrink the tumor . I am currently waiting to get my strength and weight back up so that they can do a CT Scan and then I will talk to my doctors' about surgery. I am very afaid because they have already told me that I have to have a complete colostomy and I don't know what to do or how to handle this news!

Just remeber that if you have to have a colostmy it can be no big deal depending on how you look at it. In my case I realized it was a choice between living with an ostomy and not living at all. Basically, no choice at all. Because I am a nurse maybe the thought of the ostomy wasn't so hard for me to accept. My family and I now joke about me being a real "bag" lady. lol. My ten year old son thinks it is funny that I am pooping while we are out. I am currently halfway through my chemo. I had a PICC line in but developed a bllod clot around it so now I am on blood thinners. Just remember that the clostomy is a lifesaver in some cases!! let me know how you are doing.

mrslacsr

Yes Barb, I have a FAP,also. I, too have been diagnosed with cancer - rectal. I was just diagnosed in January of this year. This is all new to me. FAP came to me from my dad's side of the family. I am one of six kids - 3 girls and 3 boys. FAP only hit my sister and I. I am the first to get cancer! I have already had chemotherapy and radiation. I have had a CT Scan done just a couple of days ago and I am now waiting to see my surgeon so that we can go ahead and schedule my surgery. I have already been told that they can get it all but that they can't put me back together, which means that I will have to have a permanent colostomy. How do you deal with your colostomy? I don't know of anyone around my town that has one and I am very nervous. I sure could use some of your input and how you are dealing with this. Thanks in advance for any help that you can give me on this.
Michele

kickerrn

mrslacsr said:

Yes Barb, I have a FAP,also. I, too have been diagnosed with cancer - rectal. I was just diagnosed in January of this year. This is all new to me. FAP came to me from my dad's side of the family. I am one of six kids - 3 girls and 3 boys. FAP only hit my sister and I. I am the first to get cancer! I have already had chemotherapy and radiation. I have had a CT Scan done just a couple of days ago and I am now waiting to see my surgeon so that we can go ahead and schedule my surgery. I have already been told that they can get it all but that they can't put me back together, which means that I will have to have a permanent colostomy. How do you deal with your colostomy? I don't know of anyone around my town that has one and I am very nervous. I sure could use some of your input and how you are dealing with this. Thanks in advance for any help that you can give me on this.
Michele

I guess I deal with my ileoatomy by realizing I am basically the same person just with different plumbing. lol. I think you wuold be surprised to know the number of people that have ostomies.I hear the Queen Mum was one of us. Just focus on the fact that this is how you can keep living. You can do everything that you did before once you have your ostomy. I am slowly returning to my Taekwon do trainig and in the fall hopefully will return to sparring- with a sheild over my stoma. I think the biggest thing is to realize the oatomy is a lifesaver and accept it. Because I am a nurse I alreay had experience with sotomies before I had one so that may have helped me. As my husband says no one knows about unless I tell them. My kids joke about me pooping in a bag. Try and get hooked up with a good ostomy nurse - they are gret for helping you get over the initial hurdles. Also for the first while once you find a appliance that works for you stick with it. Post if you need to vent- I'll be here to listen. Take care, Michelle! Barb : )

Windypep

Hello Barb
My mom had a partial colectomy at the age of 15 due to FAP she endured every 6 months of having more polyps removed until the age of 31. she is 54 now. At that time it was decided she had to have a ileostomy. I am her only child and I have screening colonoscopy's yearly and so far no polyps. Thank god! My mom has really not had many problems with her stoma. She calls it "rosebud". Last year my mom attend a local focus on health and she had some labwork drawn, turns out that her hepatic profile was all elevated. She went for addtl labs and ct abd/pelvis, hida scan and gallbladder us. Only to find out that her bile duct was dilated. She was then scheduled for a ERCP and thats when she found the malignant tumor at ampulla of vater. We took her to Cleveland CLinic for a whipple procedure and when the path report came back it said she had 2 malignant tumors one at the ampulla of vater and the other in the duodenum. Both were stage 1. She was very lucky. I am finding out that people who have FAP get cancer again in other mucous area ex: small bowel, duodenum, ampulla of vater. My mom also has fundic polyps that line her stomach. Would like to her more from you and how you are feeling and doing.