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New to the Ileostomy world: Any tips?

Posted by lmiller116 @lmiller116, Jan 29 10:08am

Hi All,
My husband had a permanent ileostomy placed earlier this month. Long story but we just finally discharged home yesterday (23 days in the hospital). A couple of key notes: His ileostomy has put him in short bowel syndrome. He was severely malnourished (lost over 40 pounds) before surgery so now we are working on building him back up.
I have a few questions for the group.
1. It was easy to monitor his food in the hospital - how can I support him and his cravings at home? (to also let you know he is receiving TPN nutrition daily - so his caloric needs are being met).
2. He has a high output (started at 6-8 liters a day) we are now down to 2.5/3 liters a day - any diet suggestions? he did just start the anti-dumping diet a few days ago and is on several meds to try to slow it down (immodium 4 times a day, opium 4 times a day etc).
3. He is having some irritation around the wafer and stoma area. The Stoma powder is helping but any additional tips?
4. Any luck with a particular type of Ostomy belt?
5. When you go out in the world how or what supplies do you always make sure to carry with you? and how do you "carry" them around?

sorry for all the random questions - but we are working on building our new "normal" and I try to plan ahead...

Interested in more discussions like this? Go to the Ostomy Support Group.

harrison221 | @harrison221 | Feb 11 9:29am
In reply to @lmiller116 "We do have a Stoma nurse. I may have been the problem :( My role was..." + (show)
@lmiller116

We do have a Stoma nurse. I may have been the problem 🙁 My role was to measure and cut (his stoma is still changing in size) and I was cutting it too big because I was afraid of making it too tight around the stoma. This was causing leakage. Now I know better and we are temporarily increasing the changing frequency (every 2-3 days) since it is shrinking rapidly.
Good to know about the paste - I didn't know there were other options beyond the powder.

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I'm replying because of the importance of the paste and also because I struggled to find answers when I first came home from the hospital. If you apply the paste right it will fill in any gaps around the Stoma. Be sure to cut the hole in the pouch as round as possible or the shape of the Stoma. The best Stoma scissors are Coloplast with rounded blades. Also be sure the Barrier Ring is perfectly lined up with the hole in the pouch. My Stoma size is about 1- 1/16" which is an odd size. I use a 1" X 4" piece of stainless steel pipe and placed 1 1/2" clear packing tape wrapping it around the pipe until it reached 1 1/16" in diameter. I place my barrier ring on the pipe, slide it up the pipe about 1" then stick the pipe in the pouch hole. Then slide the ring down onto the bag which will line it up perfectly with the hole every time. I then apply the paste around the edges of the barrier ring. I haven't had a leak since and my redness cleared up. If you can't come up with a stainless steel pipe let me know what size you need and I will make you one. I don't know the rules about sending addresses but maybe Collen will see this message and respond.

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1 reply
grands2009 | @grands2009 | Feb 11 11:37pm

I’ve had good luck using a skin protectant wipe. I change stoma every 4 days. Have found it helps a lot to take it off in the shower. The warm water helps with loosening the paste. It usually comes off clean. The less you have to rub stoma area, the less irritation you will have.

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tanya | @hmmm | Feb 12 5:32pm
In reply to @harrison221 "I'm replying because of the importance of the paste and also because I struggled to find..." + (show)
@harrison221

I'm replying because of the importance of the paste and also because I struggled to find answers when I first came home from the hospital. If you apply the paste right it will fill in any gaps around the Stoma. Be sure to cut the hole in the pouch as round as possible or the shape of the Stoma. The best Stoma scissors are Coloplast with rounded blades. Also be sure the Barrier Ring is perfectly lined up with the hole in the pouch. My Stoma size is about 1- 1/16" which is an odd size. I use a 1" X 4" piece of stainless steel pipe and placed 1 1/2" clear packing tape wrapping it around the pipe until it reached 1 1/16" in diameter. I place my barrier ring on the pipe, slide it up the pipe about 1" then stick the pipe in the pouch hole. Then slide the ring down onto the bag which will line it up perfectly with the hole every time. I then apply the paste around the edges of the barrier ring. I haven't had a leak since and my redness cleared up. If you can't come up with a stainless steel pipe let me know what size you need and I will make you one. I don't know the rules about sending addresses but maybe Collen will see this message and respond.

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Thank you for your instructions. I am having my bladder removed next Wednesday and more than likely will have a stoma instead of the neobladder.

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2 replies
harrison221 | @harrison221 | Feb 12 7:33pm
In reply to @hmmm "Thank you for your instructions. I am having my bladder removed next Wednesday and more than..." + (show)
@hmmm

Thank you for your instructions. I am having my bladder removed next Wednesday and more than likely will have a stoma instead of the neobladder.

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Good Luck...Hope it goes well.

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rose1966 | @rose1966 | 5 days ago
In reply to @hmmm "Thank you for your instructions. I am having my bladder removed next Wednesday and more than..." + (show)
@hmmm

Thank you for your instructions. I am having my bladder removed next Wednesday and more than likely will have a stoma instead of the neobladder.

Jump to this post

@hmmm Praying that the surgery went well and you’ll be on the mend very soon. God bless, Rose xx

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xxxlt | @xxxlt | 4 days ago

I use convetec two piece natura system, works great no leaks, have had very few rashes but stoma powder helps. I have found on Amazon flushable and biodegradable doggie bags, I always carry 4 in my pocket, empty my pouch in the bag deposit in toilet and I'm on my way. Alway in my car is a backpack with two complete applince changes, travel wipes, gause, tape, towel, gloves, toilet paper, extra roll of doggie bags, small water bottles and shorts ( pants) and T-Shirt just in case. I play golf so I take a similar back pack in my cart. Hope thqt helps. Terry

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