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!

I absolutely LOVE your username 😆 I also have a stoma, fitted in June this year. I was poorly for years beforehand, so it's been completely life changing for me. Great there's more awareness about them!

Thanks for answering, I didn’t realise that that part was actually called the stoma! Always happy to learn new things ☺️

@Berlinlover thanks for clarifying that, wasn't sure if it was essential or not!

I think that’s pretty disablist. No one needs to ‘announce’ what they’re going to do in the loo at the dinner table, but I assume the consequences of not emptying the bag when needed are serious (and likely to be unpleasant for everyone at the table, not just the person with the stoma), so necessary to check. This person didn’t ‘announce’ anything. They checked whether they needed to do something.

I think you are a prude! Weird reaction.

@papergloves I apologise sincerely for that, I would never intend to offend anyone and am very sorry if it was disablist. I suppose i had perhaps assumed that there might be a subtle way of checking it, and was just a little surprised at him getting the bag out at the dinner table. But I now know, and am sorry. I am a little squeamish around bodily functions, so this is clearly my issue. I shouldn't have used the word grim either. Huge apologies to anyone I have offended.

My 8 year old has an ileostomy too. He had a bowel obstruction which was cancer but also caused septic shock so his little bowel has been through a lot. 5 bowel surgeries before his stoma actually worked!

He has an incredibly high output even with maximum loperamide so it’s always been an absolute pain. Multiple leaks, sore skin and daily bag changes, usually multiple times.

He’s had it for 7 months but is now in remission and has a reversal in a few weeks.

I agree with other comments, I have a stoma and I would be devastated if people were commenting that I was "grim" behind my back for something that can't be helped.

Hopefully this thread will help you learn not to be squeamish about disabilities and be more open minded!

Is it true what my friend said when she had hers that she was given an information sheet that included 'Do NOT have sex in the stoma hole'

I have a stoma too, however mine is a urostomy as I had to have my bladder removed due to bladder cancer.. The surgeon takes a small length of intestine, attaches the ureters to it and pushes it trough the skin. So mine has urine coming out instead of poo.
If I get sore skin Sudocrem seems to sort it out.

nb. Yup, the leaflet does warn about the sex thing....

Hi
My husband's aunt has had a stoma fitted recently due to diverticulitis. She always comes to us for Christmas for a few days - is there anything I need to do to make her feel comfortable ? I just wondering about disposal really., or anything else you can suggest.Thanks

This absolutely isn't stoma etiquette. I have one and I would never dream of making a performative thing about it when out with people. As you say, grim.

Hello!

Stoma owner here- I keep matches/ candles and some air freshener in the bathroom and keep the window open where possible. Very considerate of you.

Could people stop saying that someone 'had a stoma fitted'. It's not like getting a new exhaust pipe!

Disablist- really?🙄

Do you actually have a stoma or are you speaking on our behalf?

I actually have one (and have had for nearly 7 years) and wouldn't dream of making it an obvious issue if out for dinner. In the same way I would not want anyone to announce they were going for a sh1t at the dining table- both inappropriate.

The two things aren’t remotely comparable.

But you do need to grope it because it's the only way to tell if it's bulgy...
I suppose how discreet you can be depends on its placement. I reckon if I were a bloke folks might think I was playing pocket billiards...

A good work surface in the bathroom is a godsend for laying out the equipment while being close to somewhere to wash your hands. And it takes a little while, so maybe asking how long they will need so you can warn others to work around them.

What a weird thing to object to. I think I can talk about my stoma however I like!

LOL - It does make it sound as if you can buy a kit in B&Q complete with screws and a brief instruction leaflet. Don't the surgeons refer to it as "forming a stoma" - I think that's how they phrased it to me.

Knock yourself out then. I think the language confuses people as to what a stoma is. It's not something that's been added to us.

I thought exactly this, that it was something that was added to you. I guess I imagined some sort of external thing going in the way like a feeding tube rather than a part of your body that comes out. That's really ignorant of me. I'm sorry.

I mean, it's not something I've ever said before, but it feels unnecessary to me to be called up on. My bag very much has been added to me, without it, it's a genuine shit show😂

That's very thoughtful! A lidded bin so she can dispose of her waste without feeling embarrassed. Everything goes into a mini black bin liner (like a dog poo bag/nappy sack), so she may wish to put it in the outside bin. Just have a quiet word with her and ask her preference. And air freshener/poo pourri would be lovely to provide.

I'm in a similar position, they removed my colon as they thought it was Ulcerative Colitis, now they are saying it might be Crohn's. I assume if I do have active Crohn's they will try and control it with meds - it depends where it is. If it's in my rectum, they may remove that and sew up my anus - this is known as a Barbie butt. If it's anywhere else in the small intestine, I guess meds is the only thing they can do? I'll let you know once I find out!