Seeking Support from Peers with Ileostomy Experience

I'm in high school and looking for someone who understands what I'm going through. I had just gotten into a relationship when all of a sudden my doctor said I need an ileostomy. I am currently not with this person anymore because they don't understand and, truthfully, no one will until I am at least 30. So I'm looking for a girl who has or has had an ileostomy that I can be comfortable around and not hiding my stomach all the time. I know it's a long shot, but what the hell.

I remember high school with an ileostomy; it was really terrible. It sucks that your relationship ended because of it, but I understand why. I'm in a similar boat; I need to know that whoever I'm with won't judge because of it, plus it takes a strong person to deal with being with a chronically ill person. Most people in high school aren't prepared for that.

Yeah well, hopefully mine is going to be temporary, and if I do get mine reversed, I won't judge people I'm dating based on what they have wrong with them. I love a good personality anyway. On another note, I play basketball and this next season is going to be my senior season. I was on varsity last year but don't know if I will be able to play this year. Does anyone know of a good protective belt for stomas?

At 67, I am obviously not what you are looking for... but I am interested in what your plans are past ostomy issues. College, work, focus of studies, life plans, car - do you drive? What kind of car, interest --- fishing, dancing, music, where do you want to live? The same area you are now... How are your parents dealing with everything?

I really am interested in how you see life. Even before you are 30, there is much life to live.

You caught my attention because of the basketball photo. Two of my grandsons are basketball players. One of them planned a football scholarship (U of Nevada) and his first year, he had a severe knee injury with surgery and lots of physical therapy - missed most of the year. His bottom line, football is out - maybe other sports also. Girlfriend has probably ended - different schools now, parents divorcing. I think he feels like life has pretty much dumped on him. Granted that isn't like an ostomy. He may not understand about that the way someone from this site can. You can relate to life problems falling through.

I have noticed that there are lots of young people on this site in your age range. An ostomy is always an issue to get around. They will find you and post to you before too long. If you don't hear from them - send them a note.

There are also many who had surgery when they were very young (babies) and have lived long lives with their pouch. There are amazing pictures also. Search around and see what you can find. And don't give up on all the girls at your school. There are peers who will understand.

Until something better comes along, there is an old Grandmother (Me) around who is very willing to listen. If you need a Grandfather type there are those also online. One I know about bungee jumps. I am so glad you found out about this site and connected.

I look forward to hearing more and perhaps helping with any questions you have.

Grandmother Dawneagle

That's good to hear. The way I see it, if someone can't handle it and see you for who you are, they aren't worth your time anyway.

As far as protective wear, I've only ever seen stuff here: http://www.stealthbelt.com/
This may be what you're looking for.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

I will tell everyone everything about me. I got an ileostomy due to Crohn's disease in April. Lost 30 pounds. I have now gained back forty because this damn Remicade is making me fat
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. I swim, golf, etc. I hang out with two of my best friends who I've known all my life and I can be comfortable around them. We even make jokes like, "That was so scary I almost shit my bag." I like to be humorous when talking about it because I couldn't handle it if I wasn't. I am currently looking for a girl (woman) I can be comfortable around. I played soccer, basketball, and baseball my freshman year of high school but narrowed it down to just basketball my sophomore year and now I don't know if I will even be able to do that. I drive a Dodge Durango and am going down to North Carolina on July 20th. That's pretty much the basics, other than that I'm a pretty chill person who is not afraid to change their life for the better because of my condition.

Yeah, the stealth belt will definitely work for you. I do a lot of dumb/dangerous stuff on the regular like jumping off bridges with mine, and haven't had any problems. Definitely worth the 100 bucks even if it is temporary. I don't even think about having a bag with mine until I change it.
Plus, I wear the belt 24/7. I have a couple I switch and wash, etc.

I have a stealth belt, actually... I just use it when I go swimming. Do you wear it 24/7? I was looking for something maybe a little bit harder to protect the stoma.

Yeah, humor is a fantastic way to deal with it all. My friends and I have been joking about it for years (I've had mine for 3 years collectively, got it reversed but my Crohn's refused to leave me alone, had to get it again). Having a good group of friends who can joke about it is important, and I can understand the desire to find someone who accepts you. Unfortunately, it's tough for people in our positions. I've yet to meet any guy who could look past it, so I feel your frustration.

As for a more protective belt, I'm not sure if they make them. I mean, they must be somewhere, but it may be a special or custom order.

Yeah, without friends pushing me to do stuff, I would probably be 220 lbs sitting in my basement eating potato chips and playing video games all day. I do that sometimes, but not all day.
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Looks like you (all of you) are in good hands. Even if you are not so great at subtle hints.

I will still be around if you need more.

You were asking about a stoma guard. Look at this site:
"http://www.cmostomysupply.com/cm_html/p_stomagd.html". Also, if you do a search on activity stoma guard, you will find there are others available. Good luck.

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Bob

It does suck, I haven't got the cash to pay for the use of a site.
Haha, very subtle, but sadly I don't have texting; I simply can't afford it with my school expenses.

Oh, that sucks.

I know I'm old enough to be your grandfather, but I was in your shoes once. I got my ileostomy in college and from my experience, I can assure you that most people will not give it a second thought. Really! I had lots of girlfriends and I was in my early 40s when I got married, by choice. And yes, my friends came up with some pretty funny jokes regarding my bag. One particularly cold winter day, one of my best friends joked, "Is that thing going to freeze up?" I had to laugh. It was a good line!

The ostomy armor works pretty well for me, but you might want to check with referees. This has a metal cover which I know would not be allowed on a soccer field unless it was cushioned over the metal and the edges of the metal. For you, it would be good protection; for others, it could create problems. Consider moving to more individual sports too that have less contact like tennis, bicycling, badminton - you can still be part of a team but with less contact.
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I'm not so young anymore but played many sports growing up. Whatever you do, hold onto all the activity you can and do your best to ignore the small-minded people who can't see the whole of you. On the flip side, it's a good way to quickly know who is a real friend and worthy of your friendship.

I saw those Stealth Belts when I was on this website before, and I was going to try them. I don't know why I didn't find all this good stuff sooner. But now I am supposed to be having my reconnection surgery in two weeks. So hopefully, I will not need one!!!!
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It seems like it would get gross during the summer with all the sweating and swimming. I am outside all the time during the summer...I love it! Besides the fact that I have to replace everything on my ostomy more often LOL

http://stealthbelt.com

 

It helps if you have enough self-confidence. Also, attitude makes a big difference. I don't hide the fact that I have a stoma, and it seems if it doesn't matter to me, it doesn't matter to anyone else.

You can borrow my theme song: "Simply the Best"
https://www.youtube.com/watch?v=mNU3aIJs88g

And of course, being obnoxious doesn't hinder either.

Cheers,

Ed Maste