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AMA

I have a stoma - AMA

113 replies

GrossEncountersoftheTurdKind · 09/10/2024 16:03

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

OP posts:
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Aysegull · 09/10/2024 16:04

I had one when I was 20 that was reversed after 9 months, so following with interest!

P.s. great username!

GrossEncountersoftheTurdKind · 09/10/2024 16:06

Aysegull · 09/10/2024 16:04

I had one when I was 20 that was reversed after 9 months, so following with interest!

P.s. great username!

Edited

Great that you could have a reversal! :)

OP posts:
TheSparkling · 09/10/2024 16:08

Does it give you a lot of pain?

2Old2Tango · 09/10/2024 16:10

I hope you're getting on ok with it OP.

How often do you find you need to change it? Do you attach a completely new bag? I'm just assuming here you don't have to empty/clean it out? I'm completely ignorant as to how they work, so will be following this thread to learn more.

GrossEncountersoftheTurdKind · 09/10/2024 16:12

TheSparkling · 09/10/2024 16:08

Does it give you a lot of pain?

The stoma itself has no nerve endings, so it's not sore at all. I do get pain but that's mainly because I also have a massive hernia as a result of my surgery, so that can be painful and uncomfortable. The skin around the stoma can also get sore due to always having a bag stuck on, plus my output can irritate the skin if the bag leaks/is not applied correctly, but there are ways to deal with this,

OP posts:
GrossEncountersoftheTurdKind · 09/10/2024 16:17

2Old2Tango · 09/10/2024 16:10

I hope you're getting on ok with it OP.

How often do you find you need to change it? Do you attach a completely new bag? I'm just assuming here you don't have to empty/clean it out? I'm completely ignorant as to how they work, so will be following this thread to learn more.

I have a lot of output, so I have to empty it 4-5 times a day and a couple of times during the night (which sucks). I do a full bag change every 2 - 3 days just because I feel better if I clean my stoma and the skin around it regularly, but you can leave it longer if your bag is stuck on OK!

I have a one piece system which consists of a flange (yes really lol) which is basically a big sticker with a bag attached. Some people have a 2 piece system which is a flange with a detachable bag that clicks on, so they can just change the bag part and leave the flange on for longer.

OP posts:
TheSparkling · 09/10/2024 16:27

I work as a prescribing clerk and often sort prescriptions for the accessories for stomas. It always sounded painful doing the changes.
Thank you for answering. x

HGC2 · 09/10/2024 16:35

I had a bowel resection and met with the stoma nurse ahead of my op. I didn't need the stoma this time but realised after that I had lots of questions that I hadn't asked he so I'll ask you now!
Does it smell?
Does it make noises?
Can you eat anything now or are you restricted
Have you had many leaks?

Thank you - aware I'll probably need one in the future and knowledge is power!

MujeresLibres · 09/10/2024 16:52

I also had one for a year when a teen. Best wishes, OP.

GrossEncountersoftheTurdKind · 09/10/2024 16:52

It doesn't smell - the bag its completely sealed so no smell escapes from it. When you empty it, the output does smell, it is poo after all, but mine smells more like what I have eaten than the usual shitty smell. Different foods make your output smell different. Fish and eggs cause a pretty disgusting aroma, but generally the smell is not as bad as the normal smell of poo!

It does make noises! My farts go into my bag, so it makes farting noises sometimes which is pretty funny! As the bag is hidden under my clothes, the noise is muffled somewhat, but occasionally it makes a huge farting noise that you can't hide!

I'm pretty lucky with what I can eat. They do warn you that certain foods can cause blockages (e.g. sweetcorn, nuts, seeds, mushrooms, leafy vegetables, vegetables with skin and popcorn as they are hard to digest). Personally though, I can eat pretty much everything I ate before - although I do steer clear of nuts, seeds and popcorn. No point in risking it. As long as I chew, chew and chew some more, I'm OK with vegetables etc. but they do tend to come out pretty much as they went in!

I have only ever had 4 leaks and 2 of those were in hospital following surgery. The ones I have had at home were caused by my output being really watery and seeping under the flange while I was asleep. Once you have found a system that works for you, you can pretty much eliminate the possibility of leaks. Some ostomates do struggle with leaks a lot, especially if their stoma does not protrude enough - some have stomas that are flush with the skin, or even sit below the skin, but mine pops out around 1.5" so I don't tend to have many problems with it.

OP posts:
GanninHyem · 09/10/2024 16:55

Does the bag inflate when farts go in? I'm imagining a whoopie cushion under your shirt 😂

Well done for talking about this, it's great to have more awareness.

What was the reason you needed the stoma?

PS output is a great word! Sounds very futuristic.

MumofCrohnie · 09/10/2024 17:01

Thanks for posting, OP. What was the reason you needed a stoma?

DD has Crohn's since age 9 so we are aware it's a possibility in her future. My worry is what they will do if she gets Crohn's in the small intestine after they have removed the large. They can't keep cutting bits of her innards away, surely?

TheChosenTwo · 09/10/2024 17:02

Not got any questions (yet) but thanks for the Q&A, I really hope it helps anyone looking for a real persons experience in future.
One thing I would say though and I know you said it doesn’t hurt but I’ve seen videos where the bag is emptied and reattached on a sort of stump (?? Sorry, can’t think of different term for it, does that part have a proper name?) the skin always looks so red and sore and inflamed - good to know that it’s just normal and isn’t painful ☺️

turkeyboots · 09/10/2024 17:09

How to you find the 1 piece system? Have you tried others?
DS has a stoma and uses the 2 piece system, he's very prone to skin damage from the glue and its been tricky to find a way to manage it. However some inspired Google-ing by our GP found the idea of using a brown steroid inhaler to manage the skin irritation. Just in case it helps someone else!

PaperGloves · 09/10/2024 17:17

How does it affect your choice of clothes? How do you manage to do all those changes during the working day or when out? V interesting AMA, OP.

GrossEncountersoftheTurdKind · 09/10/2024 17:22

GanninHyem · 09/10/2024 16:55

Does the bag inflate when farts go in? I'm imagining a whoopie cushion under your shirt 😂

Well done for talking about this, it's great to have more awareness.

What was the reason you needed the stoma?

PS output is a great word! Sounds very futuristic.

Edited

That's exactly what it is like - a whoopie cushion. I often wake up like this (this is not a pic of me by the way). You can 'burp' the bag by holding it up , opening the end of the bag and gently squeezing the air out. If you do that in the middle of the night half asleep you can end up covered in shite though so you have to be careful!

I was admitted to hospital after having had diarrhea for 3 weeks, my blood pressure tanked and I lost loads of weight. I was in hospital for a further3 weeks until eventually I had to have emergency surgery as they thought I had Ulcerative Colitis. They removed my whole colon and I woke up after a month in ICU with a stoma. I was massively freaked out as you can imagine, and it took me a good few weeks to come to terms with it. I couldn't even look at it at first, never mind touch it . Now they are saying I might not have had UC, it could be Crohns, so I am waiting on tests to find out and what that means in terms of next steps...

I have a stoma - AMA
OP posts:
AlllSeeingEye · 09/10/2024 17:25

What's the best cream/lotion you've used for when your skin is sore?
I have an ace stoma (not a bag), and I haven't found one that works well :(

GrossEncountersoftheTurdKind · 09/10/2024 17:28

TheChosenTwo · 09/10/2024 17:02

Not got any questions (yet) but thanks for the Q&A, I really hope it helps anyone looking for a real persons experience in future.
One thing I would say though and I know you said it doesn’t hurt but I’ve seen videos where the bag is emptied and reattached on a sort of stump (?? Sorry, can’t think of different term for it, does that part have a proper name?) the skin always looks so red and sore and inflamed - good to know that it’s just normal and isn’t painful ☺️

The 'stump' is actually the stoma. It's part of the intestine (in my case part of my small intestine) which is cut and pulled out of the body and stitched to the skin so that poo comes out of that hole (stoma) rather than coming out through the rectum and anus. A person with a colostomy has part of their colon pulled out (large intestine). As my colon was removed, mine is called an ileostomy. Part of the small intestine, the ileum, is pulled out.

OP posts:
GrossEncountersoftheTurdKind · 09/10/2024 17:29

turkeyboots · 09/10/2024 17:09

How to you find the 1 piece system? Have you tried others?
DS has a stoma and uses the 2 piece system, he's very prone to skin damage from the glue and its been tricky to find a way to manage it. However some inspired Google-ing by our GP found the idea of using a brown steroid inhaler to manage the skin irritation. Just in case it helps someone else!

I haven't tried a 2 piece. The one piece suits me, so I haven't bothered to try anything else, if it works, it works! I have heard that an inhaler can work well on sore skin!

OP posts:
CatCowCandle · 09/10/2024 17:31

Can I ask about stoma 'etiquette'. Someone I know (but not very well) has one. I've been at a meal with them before where they lifted their top, had a squeeze of their bag (as if to check how full it is) then gone off to the loo, I assume to empty it.

Now, to me, that is a bit unnecessary and feels a bit like suddenly announcing you're going for a shit while at the dinner table. Are they just grim, or am I a prude?

Also, that leads onto can you sense liquid going into it, or so you literally have to feel the bag to see if it is filling? Do you feel a 'release' in same way as having a poo?

Thanks for interesting topic!

GrossEncountersoftheTurdKind · 09/10/2024 17:38

PaperGloves · 09/10/2024 17:17

How does it affect your choice of clothes? How do you manage to do all those changes during the working day or when out? V interesting AMA, OP.

For me, I have had to change the way I dress, but that's mainly because of my hernia. I'm pretty slim but my whole abdomen area is swollen with the hernia so I look about 6 months pregnant. High waisted trousers are my friend, along with big knickers and a support belt! For others, they can wear pretty much anything, the bag doesn't really show under clothes unless it's full.

I work from home so I'm lucky that I can nip to the loo whenevr I want. I think most workplaces would make reasonable adjustments for someone with a stoma. You are given a radar key so you can unlock disabled toilets which does help if you need to change the bag whilst out and about, you just don't have room in a normal cubicle. That said, most disabled loos are not suitable either as you do need somewhere to lay your supplies out for a bag change as you need adhesive remover, wipes, stoma poweder, fresh bag, barrier rings and barrier spray etc. to hand I have had to put my stuff on the floor before now, as most disabled loos don;'t even have a lid on the toilet! It's not great 🙄

OP posts:
GrossEncountersoftheTurdKind · 09/10/2024 17:40

I'm off to make dinner now, but will come back later and answer more!

OP posts:
Berlinlover · 09/10/2024 17:40

I have an ileostomy since October of last year. It was an emergency surgery as my bowel was perforated during a hysterectomy for cancer. It is directly under my bellybutton and is not working for me at all. I have major issues with leaks and am extremely restricted to what I can eat. I’ve lost nearly four stone since I got it and now look almost skeletal. My surgeon is going to try to reverse it on 21 October, if reversal is not possible he will try to move it to a better position. You’re so lucky you only have to empty it four to five times a day. I wish you the best of luck.

Berlinlover · 09/10/2024 17:45

@CatCowCandle You definitely wouldn’t want to dine with me, I squeeze my bag several times a day, otherwise I wouldn’t know if I need to empty! Your acquaintance definitely isn’t “grim”.

hideawayforever · 09/10/2024 17:54

can you feel yourself having a poo? or is it only by looking at the bag that you can tell?

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