Hey everyone, I know you guys are all probably getting tired of seeing my thread questions and posts, but since I am getting a perm ileo, I would like some suggestions on how to make it make it best fit my lifestyle.

Yes, I am going to see my surgeon at the beginning of December to talk about where I want it ect ect, but I'd like some first-hand opinions first.

Okay, well I am 14 and currently attend a Catholic Highshcool, where, yes, I wear uniforms. I don't mind them at all if only I didn't have to make a mad-dash to the restroom every free period . The only thing I'm concerned about is wearing tights with my skirt. As you know, they come up to your waist (where my stoma would most likely sit) and I'm not sure where to the most 'comfortable' position for a stoma would be. On my old ileos, my stoma was level with my belly button so it was pretty tough to wear any kind of low jeans, skirts, shorts, because all the beacause (1) the bag would 'balloon' and (2) the stool would get stuck up at the top, making it obvious that there was a stoma behind my clothes.

When I get my new stoma, I definatly want it to be lower, but I'm not sure HOW low it can go and HOW far to the right it is allowed to be. If it's too far down, won't it be hard to tuck in my panties? How could I wear tights?

I know you wear your bag at an angle, Shell, but I don't know if that would work for me. Idk, just doesn't seem my 'thing' I guess you could say.


Thanks everyone.



xo♥,
Win

Winnie, being young like you are its a bit harder because you dont have your whole life planned out. Let me explain...
When I had my loop illeo I didnt really know to much and it was only for a bit so i really didnt know what to look for. I remember going in there .. them marking it and poof - done LOL!
When I had my loop it worked great, no issues but there were def things I would change:
1. It was to close to my bellybutton and that part of the wafer always peeled up
2. My belt would go right across from it.
When I went for my end Illeo I knew what I wanted done. First off My end is on the left side. WHen they marked me I brought 2 pair of jeans with me and belt.. I also brought my gun belt from work. I put it on with the waffer and bag and made sure its exactly where I wanted it for my life style.
I am very lucky... its a perfect fit and causes no issues with gunblet, pants, work or sports... But I knew what i wanted different.
This being your 2nd one I am sure there are things you liked and didnt like about the first one. Just make sure when you go for the sitting with them they dont try to push you around and tell YOU whats good for YOU! Your a young women that has been through a lot and they need to listen to you so speak up LOL!
That all being said, I remember my dr say to me that he will try to put it where I want it but cant promise - but he did !
Good luck and keep asking questions you a storng young women that deserves a break and I think the end illeo will be great for you if that is what you decide

Wow...If only I could type what I really want to say...I'll tell you where I'd like to stick my stoma!!!! Honestly, I've never had the chance to think about that since both of mine were done on an emergency basis. I wish the one I had now was a bit lower, as it kind of sits where the waistband of my pants hits, which can be a bit irritating. I would say go by what kind of pants you wear (i.e. low-rise, medium-rise, etc). You won't want the stoma at or above the waistband of your pants, as then it can "balloon" out on you.

Hi Winnie,
As far as how far to the right you can have your stoma, I'm pretty sure it has to be placed in your abdomen wall. But check with your surgeon about that.
Also try and get a couple wafers and bags and wear them around. Try putting the wafer in a different spot each time and just do your normal everyday activities and see what spot works perfect for you. And when you find a good spot mark the stoma opening with a permanent marker. I did this and it helped a lot, I'm a thin person and I have this little stomach "fat" roll that caused problems with my loop so I made sure my permanent was placed below my roll so the wafer would be ok.

Who cares? You should post more thread discussions
Scott

Hi Winnie,

First of all I'd like to say that I think you are one of the most mature and sensible 14 year olds I've ever met and I really admire the way you are researching and seeking out answers to the pros and cons regarding your ostomy. You are wise way beyond your years!

Wee Willie is about 2 inches to the right and 4 inches below my belly button. This is very low by most standards but means I don't have a problem with waistbands etc getting in the way so I can still wear my lower waisted jeans and skirts without worrying. The way I overcome fitting my bag into my panties is to wear my bag at an angle diagonally across my belly so that the tail is pointing to my left leg. This ensures that I can tuck it into my (lycra) knickers and the bag is well supported when it starts to fill. It also spreads the weight so is much more comfortable and avoids that horrible lopsided feeling. Oh and I wear tights all the time in the winter with my skirts and don't have a problem.

My first loop ileo was about 2 inches higher but still came about 2 inches below my waistline so I've had good fortune with the position of both of my stomas.

You really need to get a good stoma nurse who will work with you to decide the best position for your ileostomy. After all, you are probably going to have to live with this for the rest of your life regardless whether waistbands fall or rise with the current fashions.

Take care and good luck.

Shell

Ditto what Shell said, I would of never guess you for 14, I was thinking like 17 or 18. You're posting some very good questions lately that I think will be helpfull to people searching on the same questions in the future.

My temp ileo that I got last month is right level with my belly button and about 2.5 inches to the right. It stinks. I have to hike my pants over it, but they only go over it barely because of the inseam. I may pick up some pants with a bigger inseam. I tried wearing a Phoenix belt, but I still had to wear my pants over the stoma, it is just slightly too low.

If I end up with a end, I am hoping I can put it about 2 inches higher then where my temp is.

Hi Winnie, when I had my temp. ileo ten years ago I joked with my dr. about my stoma sight. I always told him that I wanted it low enough to where I would still be able to wear a bikini. I ended up with a stoma that was about two inches across from my belly button(right side) and about an inch and half down, pretty good placement for me. After take down and by the time summer came along I was able to wear a boyshort bottom that covered my scar.That was a wonderful feeling.When I went in almost seven months ago to talk about placement with my ET nurse she said that my dr. had already told her to mark me low enough for a bikini bottom. I though that was sweet,my dr. remembered after ten years. Anyway, my new site is lower than the first, now it is about two inches to the right of my belly button and about two and a half inches down. Perfect for the mid-rise jeans and a boyshort bikini when summer comes around again.

This message has been edited. Last edited by: Hope17,

Thank you for the good advice, everyone . I suppose most of it is just a matter of personal opinion, but like I said, it's good to get some advice before proceding onward.

And when I said good advice, I did really mean it. I kind of have a little plan formed up now () and I think I will first note how high my pants come up, then start wearing a wafer and bag over my skin before I get the stoma to 'experiment', and decide at which angle I shall wear my bag if I can get my hands on some supplies beforehand.
Sound good?

I'll also talk to my surgeon and ask about an ostomy nurse to get their opinions too, but I'm sure they don't know nearly as much as ya'll do about comfort of an ostomy, y'know, having 1st-hand experience and everything.


Thanks again!


xo♥,
Win

Winnie good plan... Not sure what set up you are going to use but a ET nurse should have a lot of options for you to grab one.. If you cant let me know in a Pm and I can send you a bunch of stuff

Same here Winnie, I was sent samples that I wasn't able to use. So if you would like any let me know.

And JasonPa, you are such a big brother! ahhh...

LOL hope.. I think she can teach me some things... she is a great person to have on this site for not only the "older group lol" but her age group!

Is 35 the older group? Wait, don't answer that.LOL

Im 36 so no comment :-X

Oh dear! What does that make me then? I must be in the geriatric catagory!

Shell

Oh pa-lease, Shell!! You don't look a day over 35.

Lol, I kinda wish I did look older because I'm short (off from 5 foot by like a quater of milimeter) and most people think that my younger sister is the older one, who is actually 12, and I am the younger one, who is nearly 15!! LOL!!

Oh, well. It will come to my advantage when we grow up, right? I'll look younger than her.

xo♥,
Win