My situation was a little different than most of these. I found out I had colon cancer on
Dec. 3rd and had my colon removed on Dec. 30th. I had to have it removed because of an old history of UC. I had no symptoms for about 19 years but the doctors told me that if I didn't have the whole colon removed the chances of the cancer coming back was extremely high. So now I have a J-pouch for about the last 3 weeks. As I have said before I have really had trougle with gas pains. When I had the bag I put on 12 of the 24 pounds I had lost. Yes, the bag would be difficult to get used to but I really ended up feeling good and ate almost anything. I guess from what I'm reading hear in this forum the J-pouch should get better and the gas pains should stop. They just come and go at times and when they come it ruins about a 24 hour period of my life.
The other issue I'm facing is that the oncologist is recommending that I do 6 months of a chemo treatment. Differing opinions on which type of treatment from 3 different oncologists. My stage was 2A, it wasn't in the lympth nodes but was in the blood supply to the colon, that is why they want me to do a maintenance chemo. My chances of this cancer not coming back somewhere in my body is about 80%. If I do the chemo it goes up to about 83-84%, Just not sure if that is worth the suffering and pain you go through with the chemo. I was 175 pounds and was very healthy when they found this cancer, so it is really difficult for me since I wasn't sick . Has anyone had a similar experience? Stew

I'd think that the gas pains should eventually subside as this is likely part of the adaptation period. Also, you may want to notice if you can tie excess amounts of gas to consumption of certain foods. We all have gas via swallowing air and such, but some foods may tend to increase the amount of gas individuals experience.

Six months of chemo for 3% or 4%. I don't know your situation, your sentiment, and doctors, but I think I'd have some hesitation about enduring the potential toxicity/side effects for that incremental increase. Personally, I'd look into nutritional approaches and lifestyle modifications in an attempt to increase the odds of the cancer not returning.

What chemo regimine are they recommending for you? I'm curious to know as I had chemo and before I open my mouth I would like to know what they are recommending for you first.

Chuckus, two of the oncologists are recommending that I take an oral chemo called Xeloda for a 6 month period. the other oncologist is recommending full chemo through the veins every two weeks for 2 hours and wear a pump for 48 hours afterward. This is also for a period of 6 months. This chemo is 5FU and maybe Folfox, which can be pretty tough. Not sure what to do at this time. thanks for any thoughts and help. Stew

I'd hate to be in the 20% and say "I guess I should have done the chemo..."

Stew - my story is similar to yours although things were prescribed in a slightly different order for me...
I too had a history of UC but was nonsymptomatic for years when I was diagnosed with colon cancer last May. My tumor was stage 2B - not in the lymphnodes but it had left the wall and was growing back into another section of my colon due to proximity. The doctors felt maybe I had been miss diagnosed earlier and possibly had crohns instead so they took all but a foot of my colon and left me with a temporary ileostomy while I did six months of chemo to kill off any random cancer cells that might have been floating around. The chemo was no picnic but it certainly wasn't torture either - I did 6 hours of oxciliaplatin (sp?) and went home with a pump of 5FU for 48 hrs. every two weeks. That ended in late December. By then my team of doctors had discussed my diagnosis with many specialized teams of doctors to decide if infact I did have UC - they decided to say I have undetermined colitis and went back in in early February to remove the rest of my colon and do step one for the j-pouch. I am still recovering from that surgery and still living with my bag. I have not experienced the gas pains you speak of since I am not there yet but from what I have read here it does get better - most say it can take up to a year for your body to adjust.

I guess I am posting just to let you know that for me - I opted to do anything they suggested to prevent a return of the cancer - at 48 with a freshman in high school and a freshman in college I want to do everything I can to be here for the as long as I can. I am going on faith that this j-pouch will let me lead a fairly normal life again - I know it will not be the same since I wasn't one of the ones suffering with active UC but I want to get as close as I can.
Just wanted to let you know you are not alone. Keep us posted as to your decision!

quote:

Chuckus, two of the oncologists are recommending that I take an oral chemo called Xeloda for a 6 month period. the other oncologist is recommending full chemo through the veins every two weeks for 2 hours and wear a pump for 48 hours afterward. This is also for a period of 6 months. This chemo is 5FU and maybe Folfox, which can be pretty tough. Not sure what to do at this time. thanks for any thoughts and help. Stew

Stew,

Have they explained the potential side effects to you of all the treatment options, etc..?

What are YOUR expectations of side effects?

How many Oncology opinions have you gotten?

Again, before I open my mouth I would like to hear what you think first.....

Just to let you know I was on Chemo for nearly a year myself.

If you'd like, we can take this to a Private Message if you'd like?

My gas didn't settle down until I restructured my diet and did a course of Xifaxan (antibiotic) to reduce the baterial overgrowth. I recently did a 10 day course of the Xifaxan. I stopped probiotics during the antibiotic regiment. Once off the the antibiotic I immediately started a good dose of probiotics. I think it has helped tremendously. I had takedown on Dec 22 and was suffering for a couple months with the gas issue especially going into the pouch. Stay away from these foods which will help reduce gas: eggs, veggies, dairy, greasy foods, sugar, breads. The sugar and breads are a big one cause they feed the bacteria. I've been eating a more of an style asian diet...lots of brown and white rice. Stick to Clean food. Restaurants cook with stuff you don't know what's in it. PM me if you have any questions. I've been seeing a nutritionist and it helped alot.

Mischelle: Thanks for your thoughts. I'm almost 3 weeks from takedown. It has been a struggle with periods of gas and just going to the br alot. I have put on a couple of pounds but it isn't easy. The hardest part is that I wasn't sick when all this happened and as I told you before had no symptoms for over 19 years from UC. I'm really concerned with starting chemo soon due to the fact that I'm still pretty "sick" from the second surgery. I can't imagine making myself feel worse with the chemo effects. I have been told of some side effects from the Folfox and 5FU, which ones did you experience? At least you still had the bag on during this time so you probably didn't really feel the diarehha?

The oncologist is recommending that I go in and have 2 hours of Folfox every 2 weeks and wear a pump with the 5FU for 48 hours. Is it difficult to shower with the pump on your side? How did you feel when you got done with your 5 house of treatment? Could you work and operate normally? How did you feel after the 48 hours of 5FU? Did you have any time during the 6 months where you felt OK? Were you able to eat and maintain your weight??? I do have a lot of questions as you can see. I have 2 sons in college and a wonderful wife. I want to live to a ripe old age and experience all the earthly joys the God has given us. thanks so much for your help. Stew

Chuckus: I have met with 3 different oncologists, 2 of them are recommending oral chemo, Xeloda. The last one who is from Indiana Med Center recommends that I have the Folfox and the 5 Fu treatment because my cancer cells were poorly differentiated(sp). I have another appointment with him on the 25th of this month. My first surgery was on Dec. 30th so my window of time for treatment might be closing. They would like you to start within 3 months of the first surgery.
He has told me some of the possible side effects. I'm still pretty "sick" from the takedown surgery and can't imagine starting chemo when I feel like I do right now. Not sure if I can make it through if I have a bunch of other side effects. Still trying to learn my new plumbing features!! How did you handle the chemo and what type did you have? thanks for all your time you have taken and your help. Stew

Stew, I was diagnosed with rectal cancer in August. The placement of the tumor would of left me without enough colon to attach a pouch to, so prior to surgery chemo and radiation was a must for me. I had continuous chemotherapy of 5FU for 6 weeks and along with chemotherapy I had radiation therapy Monday-Friday. It was pretty rough in the end of my treatment, but working closely with on Oncologist, she made it manageable for me. I slept a lot, and took quite a bit of medication.

I had my 2 step surgery in November and I'm still trying to figure out all my 'new plumbing'. Right when you think you have it figured out, something changes. Flexibility is a must! Please feel free to contact me if you want to chat or have questions.

Lena, thanks for your response. I'm just afraid to do the chemo so close to my takedown since I'm still recovering from that surgery. They want me to start chemo toward the end of March, I'm trying to get used to my new plumbing also. thanks for taking the time to respond. Stew

Stew, here's my 2 cents worth.

Our diagnosis are similar, except I had thousands upon thousands of polyps in my Colon and my rectum was decimated by cancer. I had NO lymph node involvement whatsoever.

I elected to do the 5FU treatment and NOT Folfox. I knew that IF we didn't see positive results, we would goto the Folfox though.

I actually had few side effects......loss of memory, thinning hair, didn't lose weight and couldn't gain weight and some other minor stuff.

I'd say, give the 5FU a try.......FIRST, then try a "heavy hitter" like FolFox IF you guys don't see progress.

The Xeloda is similar to 5FU, albeit a bit different.

I also noticed that my stool was more "formed" during Chemo......but that was also somewhat caused by the anti diarrhetic I was taking and naseau meds. Make sure that IF you have ANY side effects you tell your Oncologist, they CAN AND WILL help with that!

Keep me/us posted as I am curious how/what you take and how it works out for you.

Best Regards,

Charlie

Chuckus: thanks for your advice. I found out the other day that my cancer cells were moderately differentiated and not poorly, which makes a difference on the treatment recommendation. I think I'm just going to have to do the 5FU and not the Folfox. I have an appointment with the oncologist this Thursday and I'm going to push the Xeloda which is basically 5FU. Right now I have no cancer in my body so this is just a "maintenance chemo" to make sure if there is any cells floating around that this should get rid of them. I pray to God that it will if there is any. How are you doing with everything? Thanks so much for all your help. Hope to hear from you soon. Denny

Hi,
no advice, just another story. I got my j-pouch on account of colon and rectal cancer (one each way, but not FAP) - one affected lymph node. Still have the ileostomy so can't really talk about post-takedown stuff. I had 6 or 7 months of oxaliplatin and xeloda (the oral 5FU). Diarrhoea is one of the side-effects of xeloda - makes dehydration a big issue (I was hospitalised for that at one stage), especially as it's hard to keep your fluids up when you can't tolerate anything cold (I think that's the oxaliplatin - can't remember, sorry). I can imagine that diarrhoea would be particularly unpleasant with a new j-pouch. But as with so many things, you're trying to balance the short-term against the long-term. At least the short-term doesn't last forever!
Good luck with it all, Carolyn