Hi Guys,
I have cancer of the colon and also a bad gene which gives me 75% risk of getting this cancer. Anyway, i have 3 optionsby the way i am not up on all the medical terms yet so please excuse me)
1,stoma, i think its called ileo aswell. (the bag on the side.)
2, j pouch, ileoanal pouch.
3 just having the bad bit removed and a reconnection and having yearly colonoscopies to check for polyps.

option 3 is kinda where i'm leaning to. but the doc says if he takes away the colon then once its gone i have no risk of getting cancer there as its gone. makes sense. but what is life really like with a j-pouch?
My job is on a boat and i swim alot scuba dive and find my self in places like remote islands etc where there just are no toilets.
when you go to the loo is there alot of liquid or just a small amount and very often?
what would you do ? risk it and leave the colon and haveregular checks and maybe in the future there might be another option or just have it removed and have a j pouch and be done with it?
I have my operation on the april 4th and need to make a descision soon.
Please give me some advice,
Thanks,
by the way i have just turned 37 and this is one ofthe reasons the doc says removal is better as i have many more years in front of me ( hopefully) and high risk of getting the cancer again, if i was older they would just remove the bad bit.

Hi...I just had the colon removed last week due to 14 years of severe UC. Don't have a J pouch yet, so I can't speak to that. I will say that my Dad has had colon cancer. His first surgery was done with a re-section and 2 months later, the cancer came back and another surgery. A few months later, he had blockage/adhesions and a third surgery was done. He really suffered and had chemo on top of it all. It is your personal decision, but for me..knowing family history, as much as I hate having the stoma for now, I know I will never be at risk for colon cancer. I am 54 and have always been very active. You are a young man with many many active years ahead of you. Maybe a second opinion from another doctor? Good Luck.....

Marlinman,
You do have a lot to think about and some big decisions to make. As far as the options you mentioned, you may end up having both numbers 1 and 2. If you get a jpouch and you don't have everything done in one step surgery (I had mine done in three) then you will have a bag on your side but it should be temporary.

There are several people on this site that live very active lives with the bag and the J pouch. You might have to learn how to go without having a toilet but it's manageable. My boyfriend sails and wants to take me out for a few days. His boat is not the type that has a bathroom so he is just going to get a bucket or bedside toilet and then I can empty it when I need to. There are several people here that hike and camp and can give you tips on going outside. I know there were even sites posted that sell travel/camping toilets for outdoors. You may do a search to find those.

If it were me, I wouldn't want to mess around and risk getting cancer again. I wouldn't trust that they would catch it in time and before it spread somewhere else. Life with the bag or the pouch can be very good. I've had my j pouch for 8 years now and most people, unless I tell them, have no idea that there is anything "wrong" with me.

Get as much information as you can and make sure you are speaking with good surgeons that are experienced in the ostomy/ j pouch creations. God Bless.

Marlinman,

I'm sorry to hear about your situation. It can be tough to make the decision, being as though you have choices and none of them are positive changes. I was in a similar situation about 2 years ago, but it was also a little different. I don't have a gene that caused my cancer, rather my cancer was caused by 14 years of Ulcerative Colitis. I did develop cancer because of the UC and the argument for J pouch surgery in my case was that if we did a resection of the portion of my colon that the cancer was in, there was a high probability that it would come back in other areas of my colon in my lifetime. And the scary thing is that colonoscopies, however often we have them, cannot be 100% reliable and always detect the cancer at an early stage. So, for me, it would have been a bigger risk to leave the colon in and just proceed with a resection than I was prepared to take. In your situation, it may or may not be different.

My first thought was that I didn't care about the possibility of a return of the cancer as much as the thought of having a J pouch or ileostomy. I didnt' want to be "held back" with bathroom or bag issues. But, after much consideration and several Dr.'s consults, I made the decision for a J pouch. Overall, it hasn't been as bad as I thought it would be. It is amazing how well the human body and mind can adapt to changes.

As for your particular situation, I really can't give you a lot of advice because I'm not familiar with the gene that is said to cause cancer. I can just sympathize and offer my rationale for having my surgery. And I can also suggest that before deciding on a permanent ileostomy (if you were to choose that), it might be a good idea to at least try a J-pouch first. You can always try a J pouch and revert to an ileostomy if it doesn't work out well for you, but you cannot go from a permanent ileostomy to a J pouch as the anus is removed in that surgery. I do hope that a choice is made clear to you very soon. There should be some more folks along shortly to offer some more feedback.

Rick

Marlin,

I don't have cancer, so I can't speak to your situation exactly (former UC patient). I do know there are quite a few cancer patients who have posted on the board, so make sure and look around a little (use the Find feature). You do eliminate the cancer risk by taking it out - that much I do know :-)

As for your job - you will be fine after a period of adjustment. It will probably take you 3 months to a year to get to a stool consistency and frequency that is amenable to your job (that's how long it takes most people to adjust). I am 38 (just turned) so I am close in age to you, and I average 6-7 times a day in the bathroom. Usually:
- After getting up
- Around 1 pm (sometimes another time prior to this)
- Around 3-4 pm
- Then 6 pm, 8 pm, and 10 pm

If you follow the same type of frequency, hopefully that gives you some idea of how it would be on the boat/islands. And my poop stopped being very liquid around 3-4 months out.

If I were you, facing potential cancer down the road, I would probably go ahead with the j-pouch surgery while I was healthy. It would eliminate the risk, and give my family some peace of mind.

Marlinman,

I am a 29 year old male. I was diagnosed with colorectal cancer in June of last year. I had tumors at both ends of my colon and was told that removal of my colon was the only choice I had. I had the surgery in August with J pouch construction. Then a week later I found out that 1 of the 58 lymph nodes that were biopsied during the surgery was cancerous. I was going to need chemotherapy so I was sent to an oncologist. I began a 6 month regimen of chemo in October and just completed it last week. I feel very good now. I will see my surgeon in may for the takedown. Also, my cancer is probably genetic as well; FAP I've been told. Having your colon removed is the only sure fire way of getting rid of the cancer because it can't return if you don't have a colon. Best of luck, and let me know if you want my email adress if you have anymore questions about this issue. I'll help you out if I can.

Hi Marlinman, I didn't have cancer, but I had UC over 20 years, and my cancer risk was increasing. I was having scopes every 3 to 6 months because my colon was narrowing. I found it physically and mentally draining to be checked so often, and I finally had surgery. The jpouch is not perfect, but it's pretty close to it. Most people do very well after a small adjustment period. Personally, I would rather have the whole colon removed rather than having additional surgery, and then maybe needing chemo. It's a tough decision, keep asking questions, maybe it will help make it a little easier.

Good Luck,

janna

Thanks everyone for your answers. Its great to know there is this community here, its good to hear it from the horses mouth so to speak.
still not sure what i'm doing yet though ! like Janna said i'll just keep on asking around!
Thanks again,
J.