Hi, I am after some advice really from someone who’s gone through what I’m going through to help me understand what’s going to happen etc. I have a hole in my bladder which can’t be fixed and I can not wear pads for the rest of my life so I’ve opted for a permenant colostomy bag which is a major operation and can not be reversed. I’ve had minimal information about this - 2 a4 pieces of paper with information that doesn’t relate to me. I’m having my op on Wednesday and I’m worried, scared and confused because I don’t know what things are going to be like or what will happen once I’m home etc…so I could do with some advice really.
Hi Carmel I will be thinking of you on Wednesday. I can't help re the bag for wee but someone will come along I'm sure. Hope everyone treats you with great care. Jayne
i think that this will totally improve things for you as you can stop worrying about a pad or bring more along with you. I'm sure it will take some getting use to but in the long hall it will offer a lot more freedom and piece of mind.
My nana had a bag for years after dealing with intestinal issues since she was a child. She was 45 when they finally did this operation and she always said it was so nice as she could finally eat what she wanted and never had to worry about emergency trips to the loo.
I say follow your gut but think about quality of your life.
my mother in law had this for some months due to cancer ,although hers was reversible , she was really scared , nervous & self conscious about this , she had the op and after some weeks she adapted to it well , no wearing pads or running to the toilet , she gave the bag a name !!
I think Tivoli is right they are far more livable than we imagine , I know it's so easy for us to say this , your the one going through it , I wish you all the best and will be thinking about you , im sure this will improve your life , you've been through so much your a strong lady ,
Hi, came out yesterday and doing OK! Had a major breakdown last night cus of it all the cancer the bag etc and just had enough but I'm ok now.....
the bag is manageable but so frustrating to sort out and changing it every 1/2 days is annoying cus the of the taking it off, cleaning, putting on a new one etc - it'll become 2nd nature but for going from being able to have a wee, wipe and go within minutes to then having to spend 10 - 15 minutes at a time is annoying and when it leaks ugh! Luckily it's only happened twice majorly once wasn't my fault - it was connected to a catheter and I told the nurse at the hospital DO NOT squeeze as it'll burst all over me so what did they do! then acted like I was in the wrong for having to get out of bed (which was incredibly difficult!) and go and clean myself up, change the bag and change my pjs whilst they changed all my beddding for me! I'm managing with the pain not that there really is any anymore which im glad about just discomfort and tugging feeling which is annoying!
Hi Carmel Well on the up side there's very little pain and you no longer have to wear pads or tolerate the stents. Completely understand you losing it. Like this whole business we get challenged at every stage, have mental breakdowns, recover and adjust to a new normal. All I can offer is an ear for future rants which I admit I enjoy. You never let people patronise you and I like your refusal to be obliging. Glad to hear your home Jayne
