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3 months after AP resection

newguy1
Posts: 4
Joined: Jul 2011

Hello all... I finally became a member of the site after reading stories and situations for a long time... I had an AP resection April 21 2011 at the age of 41 due to rectal cancer. before that they tried to shrink the tumor with radiation and chemotherapy. It shrunk but the surgeon thought the best thing to do was to take the entire rectum out and sew up my rear end. I'm happy with his decision... It's comforting knowing that if it returns I did everything possible. I'm currently, taking xeloda 500 mg twice a day.. God has spared me from the nasty affects of this drug so far.. Thank you God. I'm still trying new products and I'm excited about the new product from convatec called vitila or something like that it may help with my main concern that I listed below... By the way... they think they got all the cancer and my my lymph nodes 29 or so all came back negetive.

My main concern is the noise my stoma makes... I start teaching high school students again in the fall,

if I posted this in the wrong spot please forward it to where it should go... buzzard you are my kind of guy...

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

The product you are refering to is Vitala™ Continence Control Device. I took a survey on this product. While it seemed to have some benifits, unless your insurance will pay for it, it can get very costly if used daily.

As for the noise from your stoma,some of it can be controled by watching what you eat and some will just happen anyway. I have found that close fitting clothing helps to control how much noise escapes to be noticed by others.

Any way, high school students are a funny bred...they might think it was cool...just don't let them start a compitition with you!

Best of luck with your students and your stoma.

Marie who loves kitties

taraHK
Posts: 1961
Joined: Aug 2003

Welcome! Sounds like things are going well for you these days, medically. I also have a permanent colostomy (almost 8 years now) -- and I work full-time -- with students (college age). Most of the time noise isn't a problem. But when it is, I just say 'pardon me!". Depending on where your stoma is, and how much warning you have (I sometimes have a nanosecond) you can also try that trick of pressing your elbow firmly against your stoma - sometimes works well! Are you a candidate for irrigation? (maybe you are already using?). Some are not -- especially after radiation to the butt region -- but I was -- that helps a lot with output issues, including noise (but doesn't totally eliminate noise).

I hadn't heard of the Vitala product -- just checked it out on the Convatec site-- looks interesting -- thanks for the tip.

good luck to you

Tara

ps not with my students, but with my teenage sons - who tease me all the time (I love it) I get to tell them -- well at least my f*rts don's stink! (due to the filters on my pouch and minicap). You probably don't want to resort to that in the highschool classroom, though! :)

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

My stoma was only temporary but at first it does want to sing, but it does quiet down after some time has passed. And yes, watch what you eat. Gasy foods can be very loud. Having a stoma is hard to control the noise. If you feel something coming, you can always put your hand over it to muffle the sound. Or you could always blame it on you being hungry and stomach growling. The xeloda never affected me so I'm glad you are dealing with it well.

Kim

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm glad you decided to join and participate fully in the board. Sounds like you're doing pretty well! Good luck when you go back to teaching!

*hugs*
Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Newguy,

You and I were both diagnosed at age 41- the difference is that my rectal tumor shrunk completely away with radiation & I opted along with my surgeon to not do the surgery. I did have a recurrence in the rectum and have been dealing with all the pain and issues that goes along with that- including lots of bleeding, mucus, and diarrhea. I thought I could deal with that until it started causing pain. Now, my onc doesn't want me to have surgery cause he doesn't want me to go off chemo for the 10-12 weeks that I supposedly have to stop chemo for the surgery. He's worried too much tumor growing could happen in my liver and lungs (which I've had numerous mets to for awhile).
So, in some ways I'm glad I haven't had to deal with a colostomy all this time but, on the other hand, I probably wouldn't have had this recurrence if I had the surgery to begin with.

Hang in there... I can't give any stoma advice since I don't have one. Oh- we have teaching in common too- I taught (elementary school) for 18 years up until my diagnosis. The summer I was diagnosed, I had put in for a transfer to middle school where I was hoping to get a job teaching a core class of Language Arts and Social Studies.
I'm sure some others with stomas can give you some good advice about appliances, brands to use to help with the stoma noise. Best wishes to you-

Lisa

newguy1
Posts: 4
Joined: Jul 2011

Thanks everyone for advice... I like the pardon me and continue on the best...Food does make a huge difference for me... Chicken Chicken Chicken really calms me down... It sounds so much better than what i say now... which is Oooops...It's very comforting to know there are other people like me out in the world. I must say that my perspective on life is so much better now than before I got sick... I'm appreciative of everything I encounter... Good to see teachers still doing their job with a colostomy.

It seems like the doctors could just hook up a valve with faucet or something on the stoma....maybe that new product will do the trick... Thank goodness my insurance is good I never thought my pills for every two weeks would have a price tag of four thousand dollars.

Also, I've finally decided (at least for now) what product works the best for me. I tried Hollister and their two piece system comes off too easy for me, filter is lame. Convetec two piece system the flange is really weak and does not stick good, filter is lame... I was worried with both of these products everytime I stood up with a bloated bag that the increased pressure due to bending would pop the bag off

Coloplast Sensura system is the best I've tried so far... great filter lasts at least 1 day (I agree they need to make better filter though)and the best part is the locking system... no way is the bag going to get pulled off accidentally... it fits tight then it has a clasp that even locks it down tighter...

Also, I turn the bag horizontal and put this belt thing on and it holds it tight to my body.

djm_2010
Posts: 52
Joined: Dec 2010

Hello new guy, were in the same boat, I have been diagnosed with rectal cancer last Aug 2010 and had my surgery after my chemoradiation last nov 11,2010. I also had a permanent colostomy and had finished my chemotherapy with xeloda and oxaliplatin last may2011. I had 7 sessions of xelox therapy. I had no adverse effect with my chemo except for my 7th session wherein I had erosive gastritis and pancytopenia so my onc cancelled my last session. Any way I'm doing well now and had recovered and my appetite is already returning. I have already adjusted with my colostomy although there are times when I get turned off by it. But this is better than having the cancer come back. I have been using convatek ang hollister alternately but I am more accustomed with convatek. Have you visited the site of ostomysecrets, they have great underwear for support ESP the classic wrap. I don't even use the belt because of it's great support. My stoma now seldom make noises except early in the morning where my output is at it's maximal production, he he. I just leave the house later at around 9-10 am. Even when I was having chemo I was working at least 3x a week. Now I work full time but at least takes a break 1-2x a week. I had my ct scan and all of it is negative. There is alive after cancer and it's still a wonderful life with new friends and a better perspective in life and with God. Take care!

jomar
Posts: 11
Joined: May 2011

My tumor has also shrunk down but my doctor says to get the bag. Do you know of any statistics for these tumors coming back with no surgery?

djm_2010
Posts: 52
Joined: Dec 2010

My tumor has also shrunk significantly to almost 1 cm but still opted for surgery. The radiation effectis just temporary and the tumor will definitely come back after a few months ( 6 mos- 1yr). The purpose of the radiation is to make the OR easier and possibility of avoiding having a bag and also to downgrade your staging. Mine before the radiation was stage 3a but after surgery was downgraded to stage 2a. Recurrence is higher for rectal cancer than colon cancer and once it returns it's very difficult to operate again. Better remove it while it's early than late and have just one operation than being opened up again. You can PM me if you have any further questions.

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