questions bout colostomy

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Veteran Member

Date Joined Jul 2006
Total Posts : 639
   Posted 7/22/2006 4:31 AM (GMT -6)   
im scheduled to have a colostomy next week and im so nervous.  i have no idea what to expect after the surgery.  but i have a bunch of questions.  how sore will i be after...i had a c-section...what kind of clothes will i be able to it big are the bags...i heard you can hear it when you "go", what does it sound like...will my diet change...i am 22 with a 2 year old and a 2 month old, how will this effect my/our lives...what will change

Veteran Member

Date Joined Jul 2006
Total Posts : 1123
   Posted 7/22/2006 10:05 AM (GMT -6)   

My experience as a 64 yr old with no previous abdominal surgeries:  I was in the hospital 4 days, staples out day 10 followed by lunch out - epidural during/after surgery and no pain meds after leaving hospital.  Clothes with elastic or drawstring waist (or no waist) for a couple of months while swelling subsides, then back to regular wardrobe.  Size of bag and supplier will be a personal adventure of what works best for you.  ET nurse will send you home with a "standard" appliance, but you'll probably want to experiment with free samples from different suppliers.  You'll have no control over when or how loud your new stoma passes gas - it will be more frequent during the early days.  Your 2 yr old will get the giggles when Mommy's tummy gurggles!  Docs may request you modify your diet initially, but after 5 months I eat everything I did before surgery.  Key is portion control (too much cantalope made a big mess recently) and advise to chew really well.

Now.. for some of what you didn't ask.  Depending on location, the colostomy will give you a formed, rather than liquid, output.  More time for food to digest and solidify in the intestine = more normal movements.  Irrigation is a possibility for you.  The risk of hernia is everpresent and should be discussed with your docs and ET nurse.  The healing time for this long, deep, incision is a frustratingly long time .. 6 months at least, and maybe up to a year, my folks say. 

What I see as your worse post op problem will be the restrictions on lifting.  You are a young mom with two small children - who is going to be there to pick them up, lift them down off places they ought not be, even into and out of high chairs?  Who is going to load the groceries into the car, bring them in, lift the heavy jug of laundry detergent, the dirty clothes basket, etc?  You can handle a gallon of milk .. but not much more.  I couldn't even pick up the cat for awhile!  Be very careful about doing too much too soon.

My permanent colostomy in 2/06 was due to rectal cancer.  It literally was a lifesaver.  I've been truly blessed... Cancer free with no chemo or radiation, just surveillance. 

Since you have a little time before your surgery, check into all the boards online - United Ostomy Association of America is a good place to start, plus Ostomyland and many others.   The more informed you are, the more proactive you can be, the more you will listened to and respected by both your caring family and friends as well as medical staff.   :-)

Veteran Member

Date Joined Apr 2004
Total Posts : 992
   Posted 7/23/2006 9:26 AM (GMT -6)   
I have had my colostomy for about a year and a half. I did not think this wa y at first but it was the best thing I could have done for myself. I no longer have to worry about where the nearest bathroom is. I don't really worry much about what I eat. I eat what I want.

After 25 years of staying home I am now working full time and then some! I love my job! The worst thing for me is the noises that dumb thing makes. IT always waits till it's really quiet then it makes some awful noise! I work in a nursing home so there I can blame the residents! lol

Seriously tho. It did take some getting use to. This may sound trivial but it made a big difference in my case.; The hospital sent me home with bags I could see thru. YUK I don't want to look at it all the freakin time. When I went and saw an ostomy nurse she gave me the ones the color of yourskin. May be a small thing but what a difference in how I felt!

I had a visiting nurse for awhile to come in and change the dressing in my incision. That was nice.

Good luck with your surgery and hang in there. Mind over matter. I thought I would be running back for a reversal asap. Not a chance now. I'm happier and healthier than I've been in a very long time. It doesn't stop me from doing anything. I can do more now than I could before. Take care!
Life isn't like a bowl of cherries, it's more like a jar of Jalapenos... What you do today, might burn your "butt" tomorrrow!

New Member

Date Joined Jun 2006
Total Posts : 14
   Posted 7/23/2006 9:34 PM (GMT -6)   
Oh babygirl
I want to be there for you sweetie!!! I have only been home 3 days from my surgery and I have so much to tell you. I guess some stuff wouldn't really help right now, but when you come home I would love to talk to you if you need any help. I am so open to phone calls too, because that is what is really helping me now. I met two wonderful ladies here and they talk to me any time I want!

I have a 2 and 1 year old at home and that has been very hard like wmnak said. I can't lift them! But my sweet husband took time off work for a while that I'm home. The girls will go to daycare during the day for a while when he has to go back to work. Makes me sad cuz I'm a teacher and I wanted to spend so much time with them this summer! Now, I'll be able to start lifting a little just when it's time to go back to school! So line up some help and don't be afraid to ask for stuff. That's one big lesson I'm learning. Sometimes leaning on others makes them feel valuable too, you know? Ask for help!

My surgery went very well and I"m told I have a great stoma! I had surgery last Wed the 12th but I got sepsis on Saturday ( a blood infection that is very rare) that set me back about 2 days. But I was surprised that the incision pain really wasn't bad. They gave me a morphine pump that I could press whenever I wanted. But I didn't really need that after the second day or so.

Now that I'm home, I 've had some painful gas after eating, but I think the key there is eat small small portions and honestly start with few foods... I've been eating poptarts, cottage cheese, graham crackers, milk, and apple juice. Sounds so unhealthy... and a bit depressing, but this is only temporary! I can't believe I did it but I ate broccoli my second night home! Holy cow! Can you say gas producer!!! I felt so stupid calling the dr but the pain was so bad! He said to take Gas-X and lay on my side and it really helped.

I think I've probably given you too much to think about, but I want you to be encouraged, I am a young mom too, and I am embracing this new lifestyle because I don't want to miss a thing. I love my family, Ilove my God, I have so many supportive friends who love me. I'll be you do too! You can do this!

Please e-mail me if you want. Don't want to overwhelm you, but I can be there for you sister if you need! I would help me too, you know? That there's someone like me out there going through the same thing.

BTW I will say that mine is an ileostomy, but I think that most things are the same except for the material that I pass is more liquid consistency.

total permanent ileostomy due to UC on July 13
trying to get it all figured out

Regular Member

Date Joined Feb 2006
Total Posts : 51
   Posted 7/24/2006 1:29 AM (GMT -6)   

There are way too many young people who have to deal with such difficult health issues....and I am also one of them!  I am 24 and I had a total colectomy on March 13th, so right now I have an ileostomy.  I have to agree with Margy that for the most part I think what you are dealing with is the same. 

I think the experience of the post-op recovery can vary dramatically depending on lots of things.  Your health going into the surgery can make a big difference.  I was on prednisone for 9 months leading up to the surgery and I was also very worn out and I experienced some post-op difficulties.  Whether they were all related to the steroids or not can only be speculated.  I think the biggest thing that will help you get through this surgery and lifestyle change is ATTITUDE.  I went into this surgery refusing to let it get the best of me.  I fought to stay positive even when things got tough.  You'll have good days and bad days, but you will make it through.  And after the first month of recovery you will really start to feel better and you will see the light at the end of the tunnel!  Despite the problems that I experienced my sympotms of Colitis no longer run my life.  I have relief and I can get out of my house without the stress, anxiety, or pain that accompanies Colitis. 

The one thing you will probably have the most difficulty coping with as a young person and a young mom is the change in your energy level.  Don't worry!  It won't stay low forever, but for the first two weeks or so don't be surprised if you want to go to bed at 7pm...or if you don't want to get up in the mornings. 

Here is the best advice I can give you once you've had surgery:

-get up and get moving as soon as you can. The sooner you are walking around the faster your bowels will wake up (and that's a good thing!)

-follow the diet, don't rush new foods because it can be quite an uncomfortable experience

-use your ostomy nurse! he/she is there to help you through and to answer any questions (even if you think they are silly) that you might have

-rest and recover and take all the help you can get!

Please don't hesitate to email me or post a reply here if you have any more questions.

Earthgirl :-)

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