u/WorkingOnIt_2023

Hey Friends, hoping someone can guide with their experience!

Got my ostomy three months ago, got a spouted stoma and very luckily had zero leaks from surgery through the whole three months. I know, a highly unusual and extremely lucky run.

I had my first leak a few weeks back and changed the bag as soon as I realised. I noticed the stoma was shrunken where it previously hadn’t been. It sorted itself out a bit more once I was up and about but the next two weeks it just leaked every single night but never during the day.

What can we do for this? I have to sleep on my back and it seems like the stoma is legit shrinking back into my body and I’m waking up and the output and stoma has almost disappeared entirely under the barrier ring. I don’t know what to do and I’m burning through so many supplies.

I tried sleeping a bit tilted to the right but that didn’t help much either. Is there something I’m missing, like why is this an issue now where it wasn’t before?

I’ve checked my template meticulously and tried soft convex and now light convex bags. Wondering if anyone went through similar just RE leaking only while sleeping and found some answers??

Thanks so much for your time and solidarity in advance.

I got my surgery 3 months ago, so very new here, but I've seen online content recognising World Ostomy Day / Awareness day but differing information on when it's typically acknowledged.

There's content saying it's every year, then other posts saying it's actually every three years.... what's the deal?

Do we recognise it every year or every three years? Do different parts of the world acknowledge it differently? What am I missing? Are things in flux? Can someone explain why it would be every three years and not just every year, what is the point of that? Why not just the same date every year?

Wanted to do something for October but now just really confused.

Thank you and sorry if this has all been covered before.

hey friends,

just wanting to see who in here has been living with a central line for either TPN and/or IV fluids for a while now and if so, how are you managing with it?

I’ve had lines for two years now (PICC first, now Hickman) and it looks like that won’t be changing due to how much this in combo with dysautonomia and other problems have disabled me.

I‘ve received the proper patient education for self access and have been doing that since June 2025 and it’s been going as well as could be hoped. I’ve been plodding along doing my thing but don’t have any friends in the same situation.

seeking some community and to see how people are coping in particular with the medical burnout and the exhaustion of doing this every single day? I’m having a really hard time managing the longer this continues. I recently had ileostomy surgery too and had to set up every single day of the recovery from that. it’s really hard to have no days off, no matter what.

any advice for how you are managing or approaching it would be really appreciated.

thank you in advance ❤️

Hi again ostomates,

I know everyone may be different with this but how are we managing mucus? I have a new ileostomy and did bowel prep prior to my surgery. I only had a bit after the surgery but otherwise have had absolutely nothing.

Had my ileostomy six weeks now and I'm not sure if it's "ghost p**" sensations or mucus that wants to exit but it's occasionally, not too bothersome, but nothing has come out per se.

At what point do we grab an enema etc?

- If you have an ileostomy, how much mucus are you passing and when?

- If you did bowel prep, did you rarely pass it after surgery for a while?

- When do you know you have a mucus plug?

- Any other advice?

Thanks so much for your understanding.

Hello fellow ostomates,

I’m sorry if this sounds obvious - it wasn’t to me so am wondering how many other people have wondered about this too.

I use the Sensura Mio drainable soft convex bags for my ileostomy. Now five weeks post-op.

None of my stoma nurses talked to me about the stickers over filter info, so a bit confused.

I thought the little white circular sticker on the filter *was* to keep odour out. But then the printed sheet of filter stickers made me go “huh”. When I asked, no one really knew what the printed ones were for.

So are we supposed to be covering the circle all the time for odour control with the blue bigger stickers printed on the sheet or only for extra waterproofing? Does odour escape through the little white sticker if you don’t have blue one over the top?

Thank you!!

Surgery is booked for 28th May. I've moved interstate due to my medical care falling through where I was. I have a carer who is also a family member but no other family support and have been so unwell for so long, a non existent social circle.

I'm not sure how to best mentally prepare for what's to come and wondered if you could please think through what was most comforting, true and useful to help you get through surgery in really tough times. I would be so appreciative of your lived experience and thank you in advance for reading this and wanting to share with me.

Some questions (if that helps):

• What did you keep front of mind in the waiting bay before being wheeled in? What calmed you or helped most in the moment?
• How did you navigate your first bag change? Did you need more time to make the leap, did you jump right in? What would you do differently if you had your surgery time again?
• What was common advice that you found really unhelpful and what do you advise instead in the post-surgery period?
• Where you are now - what has your overall experience meant to you and on your hardest days, what do you find helps you get through? Is it still what helped in the post-surgery period of have you got really different insights about it now?

Thank you!

The background: being chronically ill and relying on ableist parents for caregiving in your late 30s.

I want to know - who else is in this dynamic and barely surviving a Boomer parent with no self awareness or Autistic awareness who is working their sh*T out on you all the time with zero repair tools?

I’m so exhausted. Constantly tired of needing to overcommunicate and remind someone fifty times what my accomodations are. Trying to point out why things aren’t helpful and it always ending in an interpersonal conflict because they lack basic understanding of Autism profiles and needs and refuse to educate themself to avoid said conflicts (by the way; this is me saying “I find XWyX triggering and difficult for these reasons….” and it always ends in “well I guess I can’t do anything right“…. like no, I just need a few of these said things right, consistently.

It always ends with me ending up having to go outside in the freezing cold and just mentally spiral in side street or nearby park. It makes me mentally implode. I’m already so isolated and so tired of having the one person I need to understand just never understand.

Friends - what the hell do we do with this situation when we *can’t* leave through circumstance? I’m feeling so devastated.