TinaFish wrote:Hello, everyone. I'm reading about these things in a lot of peoples' signatures. Can you please tell me, if you had one, whether it was temporary or permanent, and if it had to be permanent, then why? I'm so sorry for asking personal questions; I'm just scared and want to be prepared in case I need the procedure.
What's it like living with it? I've seen photos on the internet, but I think that it could make life so difficult.
#3 - Do you have any control whatsoever as far as when the waste goes into the bag? I mean, do you have the ability to "hold it" for any length of time, or does it just go into the bag whenever it wants to?
#guess what I really want to know is... do you EVER get a break from wearing the bag? If so, for how long?
Thank you so much. Please don't be offended by the highly personal questions. If anyone is offended, I apologize in advance.
#3 had me laughing
. As I tell people, I have as much control as a bird, none at all
And no I am not offended, if anything I am more than willing to talk about it. Many doctors and people in general have picked my brain on this subject over the years. I feel like I am educating people as I believe there are many false myths out there regarding a colostomy.
My permanent colostomy gave me my life back. Radiation destroyed 2/3 of my rectal muscles. I was tied to the toilet for HOURS if I ate a anything. Many days I did not eat until I knew I was home for the day. Sometimes that was 3 or 4 in the afternoon.
My worst day prior to my surgery, wake up in bed knowing I had to go NOW. I only have seconds, did not make it. Sat on the toilet for 20-30 mins, thought I was done. Got in the shower to clean off, had another accident in the shower. Tried to make it to the other bathroom ( thank goodness, we have a 3 bathroom house), did not make it. Sat on that toilet for an hour, then cleaned up all my accidents/messes and took another shower.
I could not leave the house without Depends on and a change of clothes if I needed them. If my husband and I got to go out for dinner, I have 1 hour, then my stomach would rumble. Drop everything and RUSH home NOW as I only had 15 mins, then the fun begins
I got to be very good on Tetris with the orginial Gameboy, not to mention solitare.
When I saw the surgeon following radiation and learned about my destroyed rectal muscles, I understood then why I had no control. She referred me to an ostomy nurse, ostomy nurse requested both my husband and i attend. That was when we learned what a colostomy bag was. I left that meeting knowing I wanted one and I had my husband's full support. As he put, you can have your life back with that bag. Best decision I made. Told my surgeon to take all she wanted, just get all the cancer.
Now instead of Depends and a change of clothes, I carry extra supplies with me. Know that I have control back. Yes I may have to change a bag soon, butt it's not like I have to leave the dinner table for hours because I need to sit on the toilet. I can finish my meal, then just change a bag. Takes all of 2-3 mins, not hours.
Yes there is a learning curve in the begin, sometimes I did blow a few wafers (part attached to my skin) in the begin. But now if I blow a wafer, I'm asking myself what did I do wrong, because I know it was me.
I've had a colostomy bag for 15 yrs, and do not have skin issues. I have in the past, developed a fungus around my stoma early on (jock itch, yeast infection, & athlete's foot are all caused by the same fungus), got to see an ostomy nurse, problem solved. I use a special powder. Few yrs back, DS had bad athlete's foot, told him to use the powder, he was like "wow mom, that is awesome". Stopped the itch instantly. He now keeps some with him always. Few yrs out, developed another itch, saw the ostomy nurse and found out I was developing an allergic to the wafer. Change brands, problem solved, that was more than 12 yrs ago, ostomy nurses can be worth their weight in gold.
Having the colostomy does not slow me down. When my son was younger, I could go on all day field trips with his class. I go swimming in the ocean, horse backing riding. etc.
I keep a bag on me at all times. Again I have no control when it comes to output. Prior to my diagnoses, I never had diarrhea or constipation unless I was sick or on medicine. Now I can do that almost daily with my output. It started out firm and generally ends with more liquid output. Certain foods like salad greens with give me a more liquid output, butt because I go into a bag, not a problem. Because of above accident in shower (it was bad), DH has requested I keep a bag on in the shower. I know many people go a la natural in the shower.
Hope this helps, please feel free to ask any and all questions, Good luck,
P.S. Edited to add, my rectum is 100% gone. I have what is know as a Barbie butt, all sewn up back there.