LOTS OF QUESTIONS

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

CINDYROSE
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/17/2008 2:10 PM (GMT -7)   
I AM NEW TO THIS SITE AND HAVE SOME QUESTIONS about HAVING A COLOSTOMY. I HAD SURGERY F8 YEARS AGO FOR COLORECTAL CA. AFTER RADIATION AND CHEMO I HAVE HAD A PROBLEM  WITH MULTIPLE BM'S. IT LASTS about 4 HRS. OF UP AND DOWN. USUALLY IN THE EVENINGS KEEPING ME CLOSE TO HOME. OFCOURSE THERE ARE SOME ACCIDENTS DURING THE DAY. I HAVE NO WARNING . I AM TIRED OF NOT EATING IF I HAVE SOME WHERE TO GO OR THE TIMES I AM SOMEWHERE AND HAVE TO LEAVE. I ALWAYS WEAR A DEPENDS AND CARRY SPARES WITH ME.
  I AM SERIOUSLY THINKING about HAVEING A COLOSTOMY AND THINK IT WOULD HELP ME SO THAT I COULD GET OUT MORE. 
  HAS ANYONE OUT THERE HAD THE SAME EXPERIENCE AND FEEL THE COLOSTOMY WAS THE BETTER CHOICE. I HAVE NO PROBLEM WITH HAVING IT JUST NOT SURE IF IT WOULD BE HELPFUL. THANKS FOR LISTENING. MOMMA idea   

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 8/17/2008 2:48 PM (GMT -7)   
Most of us have ostomies due to crohn's or colitis but with some similar symptoms you are having. Personally, I had no life pre-ostomy and now I do! It makes a world of difference.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/17/2008 2:56 PM (GMT -7)   
exactly what she said, lol.
I didn't have cancer i had UC but i still lost 8 years of my life. I had surgery april 2007, and it took a while to recover, but i am back to my old self finally! if you read some of my other posts, you will see i have been up to some wild stuff, and having tons of fun!!!
so far, noone has noticed, even through swimming, dancing together, i even finally for the first time (this isn't something to be proud of i dont' guess though0 got drunk for the first time in my entire life! I could not have done that without this bag, otherwise my friends would have been out having fun and there i would have been, like you, on the toilet, or in so much pain i couldnt' do anything.
it's so awesome to be able to go out to eat, and to go to the mall whenever and to take my son to the park or even to take a simple trip to the grocery store, you dont' realize until you can do those things how much you missed out on.
good luck to you!

CINDYROSE
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/18/2008 1:31 PM (GMT -7)   
THANK YOU FOR YOUR REPLIES. I AM STILL NOT SURE IF I SHOULD GO AHEAD OR NOT. YOU KNOW THE SAYING "YOU KNOW THE DEVIL YOU HAVE, NOT THE DEVIL YOU MIGHT GET" IT JUST GETS SO FRUSTRATING AND I WORRY THAT THE BAG WILL FILL UP OR BURST WHEN I AM OUT SOMEWHERE. ALSO WORRY about THE SURGERY ITSELF. I READ about LEAKAGE FROM THE RECTUM IF IT ISN'T CLOSED. THERE ARE JUST SO MANY UNANSWERED QUESTIONS.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/18/2008 4:28 PM (GMT -7)   
i wrestled with the devil you know theory alot also, in fact i would say the same thing you are saying.  I finally overcame it by looking at it like this.
i KNEW (without one doubt) that i HATED my life the way it was, i was unhappy and sick all the time.  I looked around and i saw that i MIGHT not be happy with surgery.
So to me, that Might far outweighed that knew.  You realize what i am saying, i don't think i explained it well, lol.
 
You can wear it along time without it exploding, i sometimes go 8hours without emptying.  when i am going out, like with friends or something and dont' have to worry about it filling up, i take a few immodium and some gas-x and then i don't have much output and gas.  So no worries there!
you can have your bottom sewn up and then you won't have any leakage, i will tell you the truth to me not having a butt hole anymore washarder to come to terms with than not having a colon, i just thought that was weird, lol.  now, it cracks me up when people will make the joke, "what you got stuck up your butt?"  or jokingly say, "go stick it up your butt"  and they don't know, and i just almost roll on the floor laughing!!!
 
Anyway good luck!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 8/19/2008 2:19 PM (GMT -7)   
Hey summer ---- has anyone ever called you a "pain in the a@@"??? Now you can answer "NOT anymore!!!" Sorry, just couldn't resist!!

CindyRose,
Have you spoke to your surgeon about these concerns? What has he indicated to you?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


CINDYROSE
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/19/2008 3:40 PM (GMT -7)   
PEGGY, HAVEN'T TALKED TO THE SURGEON YET. I AM JUST THINKING about IT. MY GI DOC AND RAD. DOC TOLD ME TO THINK about IT IF I AM STILL HAVING SO MUCH TROUBLE. I AM NOT SURE THEY UNDERSTAND HOW DEBILITATING IT IS. I HAVE COPED THIS LONG BUT TALK about BEING A PAIN IN THE @##. HA. I AM TIRED OF COPING. JUST WANTED TO GET SOME INPUT FROM PEOPLE WHO HAVE BEEN THERE. THANKS., CINDYROSE

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 8/19/2008 6:11 PM (GMT -7)   

CR,

I think Summer may have posted a response similar to what a lot of us thought AFTER having the surgery and getting on living our lives after our recovery.  What good is having plumbing that is painful?  Yeh, there are some risks, like blockages, adhesions, etc.  And yes, there are some risks in getting the correct pouching system/fit for some folks.  It can be trial and error, and in errors here, it can be messy.  But Without pain.  You can certainly control come of the output with the diet you choose too.  And, if you want, there are meds to help with that as well.  Knock on wood, I cannot remember the last time I had a bad leak.  Most of the time, it is because I am pushing my wear time.  I get 5 days between changes.  When I push it cuz I'm too lazy to change it, or for whatever reason it isn't adhering quite as well as normal, then I am taking that risk.  I can feel it tho so it's no big surprise.

 Personally, I didn't have a choice regarding whether to have my surgery or not.  I was literally dying, malnourished, dropped to 82 lbs.  Enough about that.  Bottom line, I would NOT go back to living in that kind of pain 24/7 IF I had the choice.  It's been 24 years for me last month!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/19/2008 7:24 PM (GMT -7)   
i change mine on a schedule, every sunday and thursday, my reason for that was that i always worked on friday and saturday and by sunday the actual bag and cloth stuff smelled like grease, lol. And i do it on thursday cause friday is my fun night, and i like to make sure it is a new seal, but you should never change and then leave right away,lol. so i don't like to change on friday and then be out for 8 hours! how much woudl that ruin a party, lol.
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 13, 2017 11:39 PM (GMT -7)
There are a total of 2,905,189 posts in 318,842 threads.
View Active Threads


Who's Online
This forum has 158204 registered members. Please welcome our newest member, arycqmiu.
223 Guest(s), 4 Registered Member(s) are currently online.  Details
Scaredy Cat, gfields, up4thefight, ExplosiveKittens