May 24, 2024 • 3:29 PM
I sit on the toilet bowl and put a small tray table in front of me with my supplies on it.
I've had my ileostomy for 55 years, as of yesterday. The only time I didn't sit on the toilet bowl was when I was in the hospital and then had to do it in bed. The bathroom toilet bowl is much easier for me. It takes about 15 minutes from start to finish, barring any activity during the change.
May 24, 2024 • 5:10 PM
In reply to december1950's comment
Thank you! I applied my appliance today a few hours ago trying to incorporate all the tricks of the trade and a few hours later no leaks! I’m so excited 😆
5 ReactionsMay 24, 2024 • 6:41 PM
In reply to JenniferTShowerman's comment
I usually change every 6 or 7 days, barring leaks, which thankfully are very infrequent.
If you continue to have leaks, please see a wound care Ostomy nurse. It might be something very simple to fix.
Good luck to you.💕
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May 24, 2024 • 6:54 PM
In reply to december1950's comment
Thanks so much! This group has saved my sanity!❤️
0 ReactionsMay 24, 2024 • 6:54 PM
In reply to december1950's comment
Thanks so much! This group has saved my sanity!❤️
1 ReactionsMay 24, 2024 • 11:40 PM
In reply to december1950's comment
Just curious as to how you handle "activity" during a change. I would imagine things can get extremely messy in those instances!
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May 25, 2024 • 12:11 AM
In reply to bluewolverine's comment
It can get messy and frustrating. I just take some toilet paper and neatly fold it into about one inch squares and put it under the stoma to try and catch any leaks. I use my other hand to clean anything that gets on my skin. I also use a small 3 ounce paper cup and put it under the stoma if the output is heavy and the toilet paper isn't enough.
I change my appliance right after I get up in the morning before I eat or drink anything. I've been extremely lucky over the years with not too much activity when I do the change.
If I have to change during the day because of a leak, which thankfully isn't often, then I just try and do my best. That is all you can really do.
It does take patience, which I am sadly short on, but it's nothing anyone can control. I just try and stay calm and not yell. (curse) lol
May 25, 2024 • 3:02 AM
In reply to bluewolverine's comment
It’s really frustrating, but my WOC said just to keep breathing and clean up. I used 4x4’s and paper towels. I have an under pad I lie on, just in case. I’ve found lying on my back with my head propped up with pillows helps keep my belly flatter and easier to apply my appliance. She also told me to keep pressure on it for about 30 seconds with warm hands to help it stick. I have to use the extra barrier extenders and an adapter ring. It’s worth no leaking for me
2 ReactionsMay 25, 2024 • 3:31 AM
In reply to december1950's comment
Thanks for the reply! I was only curious (a near fatal flaw I have) and was interested in how you do it. Ostomies can certainly test our patience and I've lost the "try not to curse" battle on many occasions. I try to change first thing in the morning too but alas "Stomazilla" doesn't always cooperate!
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May 25, 2024 • 3:59 AM
In reply to bluewolverine's comment
We've both had this for an obseenly long time. I was 23. I still moan about having to change it. I'm not sure why though. It's still better than the life I had with Crohn's disease.
But it is what it is. I consider myself very lucky to have had a wonderful, caring surgeon. I've had many surgeries over a span of 25 years and he did them all. He was nominated for the Nobel prize in medicine twice. I was blessed in that regard. I had two surgeries before my ileostomy, then the ileostomy. Three more after its placement, due to highly distended and infected intestines. A few surgeries to close the rectal area.
I'm getting old and my memory is not what it once was. Why I don't forget these unpleasant things I don't understand. It's like it happened yesterday.
Everyone be well and just do your best. Ask for help when you need it.😍
May 25, 2024 • 3:59 AM
In reply to bluewolverine's comment
My mouth has also a difficult time not cursing, lol
1 ReactionsMay 25, 2024 • 4:18 AM
In reply to JenniferTShowerman's comment
It sure feels good to let loose with a bad word, however!! If that's all it takes to keep us happy and give us a laugh, so be it.
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May 25, 2024 • 4:47 AM
In reply to bluewolverine's comment
As someone more on the newbie side (though with you guys that could mean 5-10 years 😁), I've about concluded this is a pretty universal experience.
My start to this "adventure" did help give me perspective: The morning after I got home from my ileo surgery I was standing in the bathroom trying to fix a leak from the night before when the bag blew off (2 piece) and spewed all over the room.
I still get particularly irritated when I am just about to pop the bag on the wafer and Fifi decides it is time to wake up and spurt, but in the end remember it could be a lot worse.
Reading about the early days when people had to deal with cementing wooden or metal rings onto their gut also gives me perspective. I can't even imagine the mess I could make using the old appliances!
So, here's the $64 question: When you lose the "battle of the curse" do you have any creative poop appropriate curses?
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May 25, 2024 • 12:15 PM
In reply to JenniferTShowerman's comment
Oh sure blame it on your mouth. 🤣❤
3 ReactionsMay 25, 2024 • 1:06 PM
In reply to december1950's comment
Your story sounds amazingly like mine. I too feel mostly lucky to be here as Crohn's nearly took me out twice but here we are and thankful for the surgeons, nurses and mostly an intrepid wife who have pulled me through!
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