I have a stoma - AMA

[GrossEncountersoftheTurdKind]

I have had an ileostomy for almost one year. If you have any questions I'm happy to answer! Even the gross ones!

Thank you for being so understanding, it’s not the outside with the bag that makes me feel woozy, it’s the intestine being pulled outside the body that I struggle with.

I didn’t realise it was so discreet, I know this is going to sound naive and I hope it’s not offensive, I thought you might be able to see where the bag joins the colon.

Thank you so much for posting the photo for me, and for being kind about how ill informed I am, I really appreciate everyone who has been so open about this. I know it’s nothing at all to be embarrassed or ashamed about but like most people there are certain things we keep private and don’t feel comfortable sharing, bodily functions is one of them!

I can’t imagine how traumatic that must have been for you and you sound like such a string and resilient person. It must have been terrifying for your whole life to change so suddenly and to have to get used to it so quickly. The stoma saved your life so I think I’d see it as something to be grateful for rather then to resent, I bet it takes time to get to that point though.

It not the poo that makes me squeamish, it’s the exposed part of the intestine that I struggle with. My sister does know how squeamish I am but I think she struggles to be patient with me sometimes when she’s the one who has had to go through so much. This has made it so much easier as I feel less ignorant and ill informed after reading your posts and the other replies from people kind enough to post and share, thank you.

I think it's normal to be squeamish about, basically, a bit of your insides being outside!

I know I was when I had my operation, but it was actually not as bad at all as what I was expecting.

This might make you laugh - as part of my 'so, you're going to have a stoma' information kit, I was given a stoma bag to stick on myself to see how it feels and where it would be etc. But I was also given a fake stoma to stick on. It was almost indistinguishable from one of those little red rubber door stops that you screw to the wall/floor. (can only find a picture of black ones, but it's these)

So I wandered around for a day with a door stop glued to me!

Ha ha that's hilarious. Who knew you could get a pretend stoma? I bet that really did help you to get your head around it somewhat! 😅

Nice to come across this thread and read how others cope with their stomas.
I have 2, Urostomy and also an ileostomy. One thing I do wish I’d discovered earlier, was boys or men’s trunks as women’s knickers were uncomfortable at containing the bags. Thanks for starting the thread and I hope if you do have crohns that meds are able to help.

Good point about the knicker situation. Did you know that M&S now do stoma knickers with a pocket for holding bags? I haven't bought any yet but they are miles cheaper than the usual ostomy suppliers and apparently the pocket covers the whole front area so you could fit both bags in there!

What is sex like with a bag? Do you just make sure it's empty first & does it affect which positions you can be in?
The husband of an acquaintance has one but I don't feel I can ask her

Can you tuck the bag into your pants or trousers then? It doesn't have to hang over like the photo? Or do you have yo always wear long tops to cover it?

Are there any side effects to not using your bum hole because you have the bag, like does the skin get dry or does the hole change if it's not being "exercised"? Is it connected to anything or just kind of sewn shut on the inside?

I didn’t know m&s do underwear for stomas but it’s hard to find something suitable as usually they are just made to fit one bag whereas I have the two but I will check it out. Thank you.
I can’t speak for others user050105 but I tend to just tuck my bags in my underwear and no need to have them hanging out and don’t need long tops either. I do use comfizz which is a waistband which helps it not be so noticeable depending on what I’m wearing.

I think it depends on the stoma, some people can have them under their clothes, jeans, leggings, whatever, with no problem, I couldn't. I had to buy trousers where the waistband went under it, as any pressure on it ended up with it leaking. Instead of dropping down into the bag, anything that came out stayed around the stoma and then got forced backwards towards my body and worked its way under the adhesive. As well as being a disaster because now you and your clothes are covered in poo, it also burns your skin, and you get raw skin and sores. Like when nappy rash is really bad, I guess, is the best way to describe it.

Also, I hope @GrossEncountersoftheTurdKind doesn't mind me joining in with her AMA! I realise I've got sucked into it without meaning to! 😂

I got sucked in too!
Actually, it's great to hear other people experiences and chat about it. The nearest group where you can meet others with stomas is miles from where I live.