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!

Hi @GrossEncountersoftheTurdKind thanks for an informative thread, I've learned a lot! I have a friend with bowel cancer who is likely to need a stoma so I'm hoping to get knowledgeable so I can be the best possible friend and not get squeamish as she's said she's worried she won't be able to talk about it.

Thanks so much for posting about this. I have Crohns disease (luckily in remission since my last pregnancy 13 years ago) and know not nearly enough about this stuff.

My lovely little niece had a stoma fitted on Boxing Day at just 2 days old. She has just had a reversal at nine months and all is well but it was a steep learning curve all round, managing this for a tiny baby.

Here's a slightly odd question based on the fact that stomas seem to be much more common than people imagine. Do you find yourself looking at other people and wondering if they also have a stoma and are there any tell-tale signs that make you realise it's a possibility? This is obviously without any intent of intruding on people's privacy but stemming from idle curiosity that you "share" the same issue with someone else, be it a stranger or friend. I have a medical condition too and often find myself wondering who around me has that too. I would obviously never speak to them directly about it but I always find it crazy how much of a core experience you might share with a totally random work colleague or someone you would never have imagined has the same diagnosis as you.

Honestly, ask me anything. It's a weird position to be in having a stoma, but once you come to terms with it, it's just a part of you and your daily life. Your friend is lucky to have you. None of my friends or family ask me anything about it!

You know what? That's something that never really crosses my mind to be honest. I don't think there are too many tell tale signs, most people tuck their bag away and hide it under clothes, not many people have them hanging out on show! Some people on social media do, but I've never seen it in the wild😆

Awww, so glad your niece is doing well, her parents must have been beside themselves when they were told she needed a stoma. I hope you stay in remission!

I used to have a stoma (I have something called a j pouch now, which is a internal 'bag' that's been made out of my small intestine and I go to the loo normally again)

Honestly, the number of people - strangers! - that would be talking away about something and they would say in passing that they have a stoma, and I'd be 'oh, me too!' was bizarre. Never happened before or since. Must be some sort of subconscious stoma-radar or something...

My late grandmother had a colostomy around 60 years ago. I still remember the distinctive smell of Friars Balsam, is that still used? (somewhat unlikely I suspect).

@GrossEncountersoftheTurdKind I've had two over the years and two reversals and the difference between the first (28 years ago) and the second (three years ago) were huge.
Luckily in recent years having an "invisible disability" has become a little more acceptable but do you find hard stares when you use the disabled facilities (which are always shite)?
I've had people banging on the door and then just screaming at me when I walk out because I don't look disabled (may have flashed the bag a couple of times!).
I still have UC and still - rarely - have to use the disabled loos sometimes because the alternative would be unthinkable. I've got much better at dealing with others' nonsense but...

I am married to an ostomate - and you have inspired me to write my own AMA.

Oh that used to be used as a "sticky" thing to keep the bag on back in the day. Also smelled quite nice.

Is it true that farting feels like vibrations?

I read somewhere once you should name your stoma. Has yours got a name?!

Yes, some horrible woman had a proper go at me at a festival this Summer as I was waiting for a disabled loo. She was pretty much screaming in my face that there was "nowt wrong with me". I really felt like showing her my bag, and I did tell her I have a stoma but she kept on ranting. Luckily, some other people in the queue stood up for me which was amazing. Silly cow made me feel really uncomfortable 😕

Never heard of that!

It dies feel like vibrations! It's hard to explain but imagine letting air out of a balloon slowly, it feels like that!!!

My stoma is called Bilbo (BAGgins). I kinda wish I had called him Kier Stoma now though! 😉

Cool!

Kier Stoma 😂love it

I've thought of another question. Does the poo trickle out through the day, or come out unexpectedly in one go? Like do you know it's going to happen? Wondering how best to manage it if we go out, she has said she's worried she'll never be able to leave the house again.

We found some people on instagram who have/had them though which has helped her- Adele Roberts who has just run a marathon, Gemma Bosanko who travels the world with her job, Mollie from the Traitors who is a model etc.

Hi. The poo comes out throughout the day, no warning unfortunately. You can kinda feel it coming out sometimes as you feel a bit of a vibration, but you can't control it at all.

The only bit of control you do have is when you start getting used to how your digestive system reacts the food you eat. So stuff like mashed potatoes, marshmallows and bananas make your output thicker. That said though, it does what it wants sometimes just to surprise you! I also get Loperamide prescribed which also thickens things up if taken correctly. The hospital will give your friend a ton of information about food and diet after her surgery.

Oh, one thing that I do too is have a bagless shower before I eat anything in the morning. I'm pretty much guaranteed to get little to no output then and a bagless shower is amazing! If a bit of poo comes out its usually just bile so i just swish it down the drain. 😆

That's a good thing to know about the shower, I'll tell her! Thank you.

Does it impact on your sleep by getting in the way, and restricting sleeping positions?

What does your stoma look like without a bag? Is it like an open wound all the time or is the skin all healed up around it? Can you poke your finger in it? I can't imagine.
Sorry, are these really personal questions? I know I sound quite ignorant.

Not my AMA but I have been following and wanted to answer this one. I had one when I was 20 for a while and before that point I had never ever been a stomach sleeper. When I had my stoma I desperately wanted to sleep on my front but couldn’t as the pressure of lying down on it would have meant the bag would leak. Once I had it reversed, I spent years sleeping on my front, even though it was something I was never comfortable doing before I had my stoma!

Thank you to everyone who has commented here. I am a nurse that works on a bowel ward so I see a lot of emergency and elective stoma formations. This is great information to pass on to my patients. My DH also has UC so who knows, it is great that this is a topic people are talking more about.

Thank you for this thread. A school mum friend of mine has just had extensive surgery for a rare cancer and although I don't know for sure what they've had to remove I strongly suspect she'll have a stoma (full hysterectomy for sure but she was told they'd probably remove everything she can live without). So I really appreciate learning something about it here so I can understand a little of what she's experiencing.