Living With An Ileostomy: Seeking Advice And Sharing Experiences

Fitzy · 2024-11-23T15:18:50-05:00

Hello, I have only been on this site for about two weeks. Mainly, I've been reading everyone else's posts to feel that feeling you get when you find out you're not alone. It seems to me that those who have an ileostomy are happy with it or at least content with it. I have had Crohn's since I was born, I would say. The only reason I say this is that I was a colicky baby. Anyway, I started with a rectovaginal fistula and I was given a temporary colostomy. Well, it wound up becoming permanent. I was able to deal with it. Some nightmare stories, but as we say, “at least I'm alive.” I had that for 25 years. 14 surgeries in all. 5 years ago, I was told they were going to remove all my large intestines, rectum, anus, sphincter. I now have an ileostomy.After all that, here is my question: How is everyone okay with having an ileostomy? Maybe someone can give me tips. I am afraid to go out socially, even though at times I've had no other choice. My stools are always liquid, not to mention some gas. The odor is probably the worst for me. If there wasn't the odor, maybe I would go into a public bathroom.We are retired, supposed to be enjoying a wonderful lifetime experience. I feel bad for my husband even though he goes through it with me; he should be enjoying himself. Thanksgiving is next week and the family is large and a hall is rented. Fear is here. My nephew's wedding is during the Christmas holidays. Here I go again. I wish there was a way to stop the floodgates. My husband told me I'm crazy, but it crossed my mind that maybe I could use a tampon. Anyway, I'd appreciate any help.

warrior

Nov 24, 2024 12:38 am

So the logic with all that toilet paper is.....gift wrapping your poop to the sewer man.

That's the holiday season spirit.🤦‍♂️

1 likes

warrior

Nov 24, 2024 3:29 am

Detached an issue?

Ooh, that setup brings back a memory pre-osty.

I hated getting up to pee during the night. Kept a urinal nearby.

Well, if you can figure from there the many things going wrong with that setup—

It did. Yeah, let that imagination roll.

You, rather I, will never ever keep anything near me like a drain, bottle, bucket, hose.

Ain't worth the mess and risk.

MeetAnOstoMate.org

MeetAnOstoMate is a remarkable community of 41,457 members.

“Every morning with my coffee, I read here and feel wrapped in warmth - I hardly post, but it still feels like family.”

“Our oncologist literally wrote down the link; they said more patients need this website.”

“This place pulled me out of the dark. I went from lurking to living again.”

“At 3am, someone’s awake somewhere in the world. I’m never alone here.”

Join Free

Posted by: drfields24

Hello everyone!!!

It has been almost a year since joining this site. I just wanted to share. I know a lot of people get concerned about meeting someone on here. I'm not a lifer membership and I had someone initiate to take me out. I've been divorced since 2009. He lives in Chicago. I ignored the first time thinking he was joking. I live in Milwaukee. So a month later he sent me a message through this site saying he wanted to meet me. That was in April this year. I must say it was the best thing that could happen to me. We talk almost every day. We have so much in common. He comes up all the time to spend the day or weekend together. It really does make a difference when someone has an ostomy like you. Such understanding and we always have something to talk about. I want to share because sometimes people think it's hard to meet someone or they say this site doesn't work. I'm a testimony that this site does work. We are talking marriage this time next year. I will keep you posted.

Beachboy

Nov 24, 2024 5:07 am

Sewer man needs love too. No bow required.

The Benefits Of Skin Barrier Extenders

Hollister

Skin barrier extenders are ostomy accessories that can help your skin barrier fit better and last longer.

Learn all about skin barrier extenders.

Axl

Nov 24, 2024 9:06 am

Hi Fitzy

I forget I have an ileo most of the time, and the output is usually looser, sort of self-cleaning because of that. I have had mine for 8 years and do everything that I have always done, but with a few small adjustments. When sitting and emptying, put some paper in the bowl first.

Fitzy

Jan 18, 2025 7:08 pm

Hello, I've been out of commission for two weeks with the flu. I did get the flu shot, but it seems they didn't get it right this time.

Anyway, I want to give Warrior a great big shout out with a great big thank you!

I have been so worried for 30 years about public bathrooms and the odor. Warrior, you helped me so much. I checked out M9; it's a miracle! I first purchased it on Amazon, then when I needed to order my bags, I asked about M9. The supplier said they carry it, not only did they carry it, they shipped me three 8oz bottles at no cost to me. It's covered by my insurance. If you hadn't responded to me, I would still be staying in my house, saying no to invitations. Thanks.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

warrior

Jan 18, 2025 7:31 pm

This thread died last Nov. '24.

Glad to see you checked in and are keeping up with this topic you started.

Equally glad I helped you get out of the house, but please, there are others here too that need recognition for helping.

I was just passing through and wanted to help, like others, we are here to help and advise.

You did good scoring those bottles of M9.

I'm very happy you feel comfortable going out now.

You go, you do, you get it done now. Have a life... whenever we can help, we will, hon. Happy New Year for sure!👍

Living with an Ileostomy: Seeking Advice and Sharing Experiences

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister