u/WorkingOnIt_2023

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.