Looking for friends who can relate to living with an Ileostomy.

I would really like to find a friend who I can share with and listen to. I live on Long Island, New York, and would love to meet someone I can support and share my journey with. I have an ileostomy and struggle with high output and the usual ostomy issues. I've tried a support group in West Islip that meets on Saturdays once a month, but I found it hard to relate to some of the members. If anyone needs a friend to share experiences and lives on Long Island, I would really enjoy hearing from you. Thanks 

Hi, a former Suffolk County Long Islander here! 😊 I've tried in-person support groups but never found them very supportive. I'm sure you'll get good info on here from people who can relate.

You will have plenty of friends here! A very supportive group.

G-Day alegend209,

You might not be able to meet them face to face, but here you have a bigger group of people who care for each other and not only give advice but also need help themselves.

Pull up a chair and say hello.

Regards, IGGIE

Thanks! I really appreciate it!

How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

Good to have you aboard.

IGGIE

Welcome to the best virtual support group.

Hi Legend, welcome to the site. Long time ileostomate here.

Welcome to the group. There is nothing about living with an ostomy that someone on here most likely hasn't experienced.

Everyone here is great. You will find lots of support here and answers to your questions. Welcome aboard.

Thank you!

I am not on Long Island, but I have had my ileostomy for almost 70 years. I had a conventional ostomy for 30 years and changed to a K pouch (Koch pouch) in 1991. I have lots of experience and lots of stories. If you want to contact me, I am only a few keystrokes away!

Hello. Boy, have I got experiences to share. I had a complicated ileostomy 1 1/2 years ago but am still dealing with short gut and retaining nutrition and maintaining magnesium hydration. Life is not easy for me yet. But I do my best. It's fine when I feel well. I joined this in the hospital where I initially was for 2 months. I hope to get and give support as best I can. Best wishes!

You have to pay on this site to send messages. I won't pay; you should not have to.

This is a wonderful group. My husband and I got help on many issues regarding his ileostomy. There is always someone else in the group who has had the same problem, and you'll get loads of answers to try. Welcome.

Hi Alegend. Welcome. Lots of great info here. Great people! Have you tried high-output bags? I had trouble with blowouts, especially at night, and my Coloplast Advisor sent me samples, and I switched. Less sleepless nights! Try them and good luck on your journey!

Hi there, I'm the caregiver for an ileostomy, coming up on two years, and would love to share what I've learned and learn what you find that has helped you. The biggest difference between us and colostomy patients is the wateriness of output, which leads to leaks and then skin damage around the stoma. I've tried a lot of different things, and I'm still looking for better. I just requested samples from Ostoform for a barrier ring that has a "spout" that doesn't melt from output but directs it into the pouch. I'll share how it goes once I've had a chance to try it.

Right now, we use Hollister high-output bags and a ceramide-infused barrier ring. My wife's stoma is recessed, and that has given us fits. If you have any tips and tricks that have helped you, please share. If you have questions, I've likely dealt with most of what you are going through, from diet to exercise, clothing, all of it. Please don't hesitate to reach out. This has been a great community. I'm sure there are many others who can help as well. I wish you peace and NO LEAKS!

Yo A! Grew up in Bklyn and lived in Baldwin Harbor for a while. Now I live in Iowa, the exact opposite. I found NYers were not nourishing. We grew up suspicious of all. Self-protection or street smarts. No eye contact. Hard to speak to strangers, "You talking to me? - DeNiro and Pesci. People on MaO are kind, helpful, and experienced.

Why do you think you should not pay to be able to be a full member? Do you think the organizers of this group do it for nothing? I would like to hear your explanation for not having to pay.

Hi ~ I am from Floral Park and just moved to Glen Oaks behind LIJ Hospital/close to Northshore Towers :) Welcome ~ What part of LI are you from?

This is a great group of people from all over and with so much information! Ask away!! Reading all the stories and picking up so much advice makes me breathe easier, and I hope we all help you along the way ~

I am almost two years with my ileostomy and happy to be alive and happy to have my life back!

Have a great day!

Susan

I am looking for a friend for support and to relate to everyday life. It is always a good thing to share the same problems we are dealing with.

Welcome to the group! I joined a few weeks ago, and the advice and support from this wonderful bunch of people are amazing! Hope you feel able to share with us. We are here to help, and you're not alone :-D

Thanks so much! I will

I live in Iowa and wouldn't mind corresponding with you. Mary Dawson, Ft. Madison

Thank you! Yes, I have tried the high output bag, but it's not easy to hide at work. I try to be pretty private about it; I supervise a lot of people and try my best to keep it low-key. I really appreciate the info, and so far, the site has been great!

Hi! It's always a backup if needed! I'm retired and very open about my ileostomy to anyone who has questions... Sorry to say, but I knew nothing about colostomy or ileostomy until it happened to me and saved my life! Good luck on your journey, and don't hesitate to ask questions! God bless!