fear of colostomy surgery

[Broken Doll]

I think I'm ready to bite the bullet and get the colostomy. I'm a C-5/6 quad female. My bowel program is magic bullet and dig stim every other day, well now, almost every day. The process takes 1-3 hours, is painful, my AD reaches dangerous spikes in both high and low blood pressure, my bed and PJs are soaked with sweat, its humiliating and I'm miserable for at least an hour afterwards. I'm starting to bleed (probably hemmerhoids). I need Norco to stop the pain and sweating. I worry half the day about leakage or an embarrassing accident.

I'd like to travel and have a job where I'm not exhausted from the BP or worried about accidents.

I'd like to use the money I pay a caregiver to dig in my butt for 2-3 hours on something else.

How many more reasons do I need to be convinced that the risk of change will be worth it?

Please help me out and tell me your experiences because I'm still scared. I don't want to do anything that will make my life worse.

I'm vain. I don't want to be embarrassed by smell, noise or leakage in public. Will it be easy for me to take care of by myself? Will I be able to fit it with the corset/binder I wear?

Does it make a difference if I lready have a bladder augmentation stoma?

How do you irrigate?

How was the surgery and how long was your recovery?

Was there anything you would have done differently?

What's the difference between the colostomy outside and the one inside your body.

What about having sex?

How much time is spent on your bowel movements with the colostomy? Clean -up?

What supplies are needed and how much do they cost?

How often does it fill up? Can you regulate it by diet?

Any other issues I'm not thinking about?

Any good articles or resources you can recommend?

I'll really appreciate your advice.

[SCIfor55yrs.]

I cannot comment on colostomy specifics, but I know what you are going through. I went through the same aggravation and suffering with a chronic UTI. I finally bit the bullet and had an illeal conduit done. I was fearful and there was a lot a post surgery anxiety while tweaking the urostomy drainage system for 2-3 months. In the end it was a real life changer. It made major improvements in both my health and quality of life. My only regret is that I did not have it done a year or two earlier. Best wishes for a similar outcome.

[offroaderswife]

I've had mine for 17 months and I LOVE IT! Mine is very well concealed under my clothing. I wear swim suits and everything I did before. I just started irrigating in December and LOVE IT EVEN MORE than I did before. I "usually" am output free for at least 36-48 hours unless something just upsets my stomach for some reason. I've had maybe 3 leaks and 2 of them were in the beginning as I was learning to put the appliance on. 1 of them was when my husband gave me a stomach bug and I was stretching my appliance wear time pretty thin just to see how long I could make it. None of the leaks ever reached my clothing. It is the best decision I've ever made.

[Broken Doll]

Originally Posted by SCIfor55yrs.

I cannot comment on colostomy specifics, but I know what you are going through. I went through the same aggravation and suffering with a chronic UTI. I finally bit the bullet and had an illeal conduit done. I was fearful and there was a lot a post surgery anxiety while tweaking the urostomy drainage system for 2-3 months. In the end it was a real life changer. It made major improvements in both my health and quality of life. My only regret is that I did not have it done a year or two earlier. Best wishes for a similar outcome.

http://sci.rutgers.edu/forum/images/...more/metoo.gif

The illegal conduit bladder augmentation changed my life too. If a colostomy did the same, I would be really happy.

[bnb]

I did have the surgery one year ago-best decision ever! Only problem has been some leakage around the seal and adapt paste totally solved that. i have a closed end pouch, change it morn. and nite and put a new seal on every 3 days. it only takes minutes. bag hides easily under loose pants and shirt. i also take devrom tablets to help odor. helps alot. no one was more scared of surgery than me and i survived and am thrilled i did it. i get up in minutes rathr than hours, made life fun again!! hope this helps

[bnb]

also mine is on the left and i can eat anything.

[Broken Doll]

Originally Posted by offroaderswife

I just started irrigating in December and LOVE IT EVEN MORE than I did before.

I "usually" am output free for at least 36-48 hours unless something just upsets my stomach for some reason. I've had maybe 3 leaks and 2 of them were in the beginning as I was learning to put the appliance on.

1 of them was when my husband gave me a stomach bug and I was stretching my appliance wear time pretty thin just to see how long I could make it. None of the leaks ever reached my clothing. It is the best decision I've ever made.

What does it mean to irrigate it? And why did doing that make you love it more?

So you don't poop for 1.5-2 days? Do you know when its going to happen? For instance, if I was on a airplane and couldn't get to the toilet, how would I handle this situation?

Stomach bugs & flu - how does the colostomy handle these situations?

[Broken Doll]

Originally Posted by bnb

I did have the surgery one year ago-best decision ever! Only problem has been some leakage around the seal and adapt paste totally solved that. i have a closed end pouch, change it morn. and nite and put a new seal on every 3 days. it only takes minutes. bag hides easily under loose pants and shirt. i also take[COLOR="rgb(255, 0, 255)"] devrom tablets to help odo[/COLOR]r. helps alot. no one was more scared of surgery than me and i survived and am thrilled i did it. i get up in minutes rathr than hours, made life fun again!! hope this helps

What is closed pouch and devrom tablets?

[offroaderswife]

Originally Posted by Broken Doll

I think I'm ready to bite the bullet and get the colostomy. I'm a C-5/6 quad female. My bowel program is magic bullet and dig stim every other day, well now, almost every day. The process takes 1-3 hours, is painful, my AD reaches dangerous spikes in both high and low blood pressure, my bed and PJs are soaked with sweat, its humiliating and I'm miserable for at least an hour afterwards. I'm starting to bleed (probably hemmerhoids). I need Norco to stop the pain and sweating. I worry half the day about leakage or an embarrassing accident.

I'd like to travel and have a job where I'm not exhausted from the BP or worried about accidents.

I'd like to use the money I pay a caregiver to dig in my butt for 2-3 hours on something else.

How many more reasons do I need to be convinced that the risk of change will be worth it?

Please help me out and tell me your experiences because I'm still scared. I don't want to do anything that will make my life worse.

I'm vain. I don't want to be embarrassed by smell, noise or leakage in public. Will it be easy for me to take care of by myself? Will I be able to fit it with the corset/binder I wear?

Does it make a difference if I lready have a bladder augmentation stoma?

How do you irrigate?

How was the surgery and how long was your recovery?

Was there anything you would have done differently?

What's the difference between the colostomy outside and the one inside your body.

What about having sex?

How much time is spent on your bowel movements with the colostomy? Clean -up?

What supplies are needed and how much do they cost?

How often does it fill up? Can you regulate it by diet?

Any other issues I'm not thinking about?

Any good articles or resources you can recommend?

I'll really appreciate your advice.

Does it make a difference if I lready have a bladder augmentation stoma?
Several people on the UOAA forum have both.

How do you irrigate?
In short, You use a special sleeve (long) to place on your flange where your bag would normally be (or you can use a face plate if you don't use a 2 piece system). In a separate piece of equipment called the irrigation bag, you will fill it up with warm water, insert the stoma cone which is connected to the irrigation bag via a long tube in to your stoma through the top of the long sleeve you will be wearing. You will let the desired amount of water (ask your dr) flow in to your colon and then remove the cone from the stoma and quickly zip the top of the sleeve so that the output and water can run in to the sleeve and in to the toilet, otherwise you must clip the bottom of the sleeve and not let it get too full or the clip will break and you will have a mess. I prefer to keep the sleeve hanging in the toilet while I irrigate so that I don't have to take a chance on a big mess. I do 1 infusion of 1200-1500 CC's and wait for returns (about 5-7 minutes) and then I do a second infusion of water of 500-800 cc's to get the last bit out, then I wait another 5-7 minutes and get off of the toilet ( I do plenty of pressure releases while I'm sitting on a cushioned toilet seat). I keep the sleeve on and clip the bottom as I roam about the house just in case there are "late" returns of output. After an hour I take the sleeve off (usually shower with it on and rinse it in the shower) then remove sleeve and put my bag back on for insurance just in case my colon decides to go. VERY VERY RARELY DOES THAT HAPPEN!

How was the surgery and how long was your recovery?
My surgery was simple since it was elective. I was in the hospital for 6 days but I had a ischial flap done at the same time as the colostomy. My colo surgeon said I could have gone home in 2 days if it weren't for the flap. I got the colostomy to help heal from the flap surgery.


Was there anything you would have done differently?

No. Mine turned out perfect. No pain. Just a learning curve on how to use and apply the equipment.

What's the difference between the colostomy outside and the one inside your body.
Not sure what you mean on this one?

What about having sex?
Sex has been even better for me. I wear super cute little lingere items that cover the stomach but leave all the essiental area's open. I have so much peace of mind now because I know that the chance of an accident is ZERO! Before I started irrigating I would just make sure my bag was empty and clean. My husband said he doesn't give a damn what's on my stomach during those times....It's the least of his concern

How much time is spent on your bowel movements with the colostomy? Clean -up?
I think it depends on the person and their bowel. Before I started irrigating I would go to the restroom everytime I felt something in my bag. I couldn't stand the thought of something being in there so depending on my diet, I would visit often if I was eating bad and less often if I was eating good. Now that I irrigate, I dedicate 30 minutes to the irrigation process and then I just wear the sleeve around the house to take a shower, do chores, fix my hair ect....once the hour is up I remove the sleeve and put my clean bag back on.
I change my flange once a week and it takes about 25 minutes to remove and add another one. Lot's of tips to make this better that I will share later.


What supplies are needed and how much do they cost?
There are 1 piece closed bags, 1 piece drainable, 2 piece closed, 2 piece drainable ect.....2 piece just means that you can remove the bag without taking the flange off of your skin each time. I prefer the 2 piece drainable but everyone is different. I order 1 box of flanges (10 per box), 1 box of bags (20 per box), 1 box of adhesive remover (50 per box), 1 box of skin prep wipes (50 per box), 1 box of eakin seals (20 per box) and that amount last me for 2-3 months. The cost will depend on your insurance and deductible.

How often does it fill up? Can you regulate it by diet?
It varies by person and diet.


Visit the UOAA.org site and skim through their forum. There is so much information on there and very helpful people. You can also search youtube for videos on irrigation and colostomy maintenance. Feel free to message me with any questions. Everyone's routine and equipment varies and some are more efficient than others. Talking to as many people as possible really helps.

Good luck to you!

[offroaderswife]

Oh yes, DEVROM IS AWESOME! I take 2 each night and make my husband take them too if he is stinking up the place. LOVE THEM!