Meeting Others with Ostomies: Share Your Experiences!

Just wondering how many people you've actually met in person that have an ostomy. I can think of two I've met, how about you?

Just one, we both knew instantly that each of us had a bag!!! We were both doing the pat the belly to check the bag move. We looked at each other, got a look on our faces - like - ah ha!!!!

I had an uncle that had one before me, but other than that I have never met anyone with an ostomy. I wish I could so we could compare notes, but I haven't been that lucky. LOL

Hi all, I've only met two. One is my brother who had a temporary colostomy due to colon cancer, and the other was a visiting ostomate when I had my original surgery 27 years ago. Ron

Joining this website was the first time to ever be in contact with other ostomates, after having an ostomy since age 10 and living in the ostomy world all alone :/ This site literally helped change and improve the quality of my life by assisting me in linking with our 'family' here .....then making some awesome friends from the site who encouraged me to locate and discover an Ostomy Support Group near my area I was never aware of, after that I've met many ostomates and it is a very rewarding and healing experience and it is most wonderful to be able to support each other!!

As to how many ostomates I've personally met, I am trying to think about that. I haven't been to any of the big conventions because I do not have the money BUT I suppose I have met over 20, and our Support Group Leader is an Ostomy Nurse who is the best ever xoxoxo (Patti) .....and there are still so many of you I hope to meet one day. Maybe there will be a big Meet Up in Wisconsin someday. I greatly encourage you to meet up. I still have enormous THANKS to my best friends I've met on here who have been SOOOOooooo supportive of me, y'all know who you are! xoxoxo

I used to be more active with an IBD forum and met a number of ileos. I don't think I've met any colos yet. I am hoping to change that via this site.

I have only met two osteos since I got my ileo. One was my brother, another case of an ostomy by accident (read malpractice) which led to his death, and the other was one of my old grade seven teachers. Funny thing, I know there are many more around me because I've made it a point of checking out the ostomy supplies in the five pharmacies here and they always have a good supply on hand. But I've met some wonderful people right here who have given me much help over the years and I will be forever grateful, Ed

Only one I saw a man walking on a beach in Mallorca this year. He was wearing his shorts low, showing his bag without a care. I went up to him and told him I have a stoma but don't have the guts to show everyone. But he was German and didn't know what I was saying, so I showed him mine. He gave me a thumbs up and that was that. He just carried on walking.

Surprisingly, I got an astomy about 2 months before my best friend had to get one unexpectedly. It's been so helpful for us to have each other to call with questions. We are being treated at different hospitals by different doctors, so it is interesting to hear what is the same and what is different in our instructions and treatment.

I've had my ileo for two years and have met one other person. It happened during tax season the year before this one past. I volunteer with AARP preparing taxes, and the lady I was helping had a lot of medical bill receipts. I noticed it was my surgeon's name, and she'd had the same operation as me. Unfortunately, like me, she still didn't have enough deductions to make it worth the long form. It felt so good to meet someone else with an ileo.

I have only met one other person with an ostomy, and she was my nurse. I kinda feel all alone in this world.

Some of you folks have been lucky enough to meet quite a few people with ostomies. I think at times it can feel quite lonely as the only person around with an ostomy.

I need to improve my dyslexia. I read, "It happened during a sex session.....

Sorry, lol.

Don't you have an ostomy association near you where you can meet many others in a similar situation?

Before I returned to Australia, I started my own and there are about 12 members now, just a thought.

In 2003, my stoma nurse suggested that I come to a support group that she had started. There were about 30 members at that time. I did attend a couple of meetings, but their meetings are on a Wednesday and I go to classical music concerts which are held on Wednesdays. Perhaps you could find a support group somewhere near you by discussing the subject with your stoma nurse??? Do you have an association you could approach for information about support groups?

I am not deeply into posting on internet sites. I will respond to a post if I think that I have something to offer. Usually, by the time I see the forum item, enough people have responded to satisfy a person who had a problem and was seeking helpful opinions. I really think that support groups are the way to go.

By the way, I have a permanent colostomy and I irrigate every 2 days and have done so since 2004 when chemo and radiation treatments finished.

Doug

I belong to a local Ostomy Support Group in my city and, therefore, everyone either has a colostomy, ileostomy, or urostomy. We just recently returned from a week's summer retreat/camp for our kids and teens with ostomies where they could all get together, learn more about their individual situations, share information, get support from each other and the staff - as well as visit all the theme parks, including water parks. So, I believe there are local chapters in all the states in the US plus others outside the US. The organization is called United Ostomy Association of America (UOAA) and their website is www.ostomy.org. Within this link, you will find the following list of ostomy support groups within and outside the US. Click on this link to find the page easier: http://www.ostomy.org/supportgroups.shtml. This link will bring you right to the page where you can click on the state you live in - and find local branches from there. I hope this information helps you connect with others like yourself.

I've met one ostomate since 2005 and he came to support me. The whole county knew what happened to me because my husband was in a public position and I almost died in the hospital 3 times from hospital mistakes. He actually had a j-pouch at that time and was having trouble with it. He was going to look into the BCIR that I had looked into. Haven't talked to him in quite awhile so don't know more. As a colostomate I needed more support than being an illeostomate because the colostomy made so much noise. I was surprised to find the illeostomy doesn't make much noise. Life is good with my illeostomy. The stress was much worse trying to quickly find a bathroom when away from home.

Got my ileo in '87, back when I was sick/post surgery the hospital arranged for a fellow ostomate to come visit me and explain some stuff/show me how his ostomy is set up, etc. And my ex-wife's uncle has a colostomy (but he NEVER talks about it and I see him very rarely, 2x in the past dozen years). Other than that, you fine folks are really the first ostomates I've had any exchange with.

A friend with the same colorectal cancer was diagnosed and got a colostomy 6 months before I did. Since then, my cousin and best friend's mom have also gotten colostomies. I have also traveled and met another ostomate as well as a patient my doctor referred to me. The charge nurse in the unit where I had my surgery had an ostomy, as well as a student nurse who took care of me. I have met many ostomates.

I know 2 people who are ostomates. This proved to be very important to me when I first got my colostomy. One of them has been a person I've held in high esteem for many years. I don't know how my emotional and psychological recovery would have gone without these 2 people in my life. I have found that identification with others to be very important to my psychological well-being and am so grateful for the people in my life who I can relate to.

Matt