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My stoma is ruining my life

30 Jul 2020 19:36

I don't know how to get over having a permanent stoma. 
I have had one for a year now due to rectal cancer and it is about to be made permanent as I am due to have a pelvic exenteration. I am just dreading the rest of my life after this surgery. 

My stoma is ruining my life

1 Aug 2020 13:48 in response to Kit82

Hello Kit82

I'm sorry to hear that you're struggling so much with your stoma. I can see that you've been chatting with others brieflly on another thread. 

I'm not sure if you're aware but there is a specific charity which may be able to give you some help and support called Colostomy UK. They have a number of online support groups as well as a 24hr helpline. 
I'd also suggest that you either speak to your Consultant, nurse specialist (if you have one) or your GP and explain just how much the stoma has impacted your mental health. It sounds as if you'd benefit from some psychological support in processing everything that has happened to you and the surgery that you're now facing. Having spent your life dealing with bowel issues it may be that they don't realise just how much this has impacted you and think that you're just soldiering on with things. 

Alternatively you could check out your local Maggie's centre who are currently offering both phone and face to face counselling sessions. Hopefully their drop in sessions will restart in the coming months. 

I hope that you're able to find the support that you need Kit82 and that your surgery goes smoothly. 

Sending my best wishes, 
Cancer Chat moderator

My stoma is ruining my life

1 Aug 2020 14:07 in response to Moderator Jenn

Thank you. 

I'm just not sure how talking about it will change anyway. 
But I appreciate the advise. My long term prognosis isn't great anyway, just a sad way to live the rest of my life. 
Crazy to me that there has been no advances in this and there is nothing better for us instead of this antiquated method of pulling an intestine out of your abdomen and sticking a bag over it. 
Anyway. Thank you for your help. 
Kindest regards and well wishes to you. 

My stoma is ruining my life

1 Aug 2020 16:30 in response to Kit82

Very sorry to hear this. A pelvic extenteration is a heavy procudure.  I know that I would really hate it as well. I also saw your age on another thread. 32. Crazy young to have to deal with stuff like this. I wish you all the very best. And vent all you like. Life really sucks sometimes. Best wishes. Harry

My stoma is ruining my life

2 Aug 2020 16:08 in response to Kit82

Hi Kit


I’ve had a total pelvic exenteration and have 2 stomas-urostomy and colostomy. I don’t know how you get over it-it’s life changing in every way. I try to think of it as acceptance that this is the way it has to be, as without the surgery I’d likely be dead now. I’m 4 months on from surgery, cancer all removed and learning to live a new life. Do I like having stomas? No, I don’t. Do I like being alive and feeling very well? Yes, I do. It’s the price I had to pay, but I wish there was more psychological help with this kind of operation, and there just isn’t. I wanted the surgery to give me a chance of a cure..but there is no help with adjusting to the mental issues involved. Can I ask what it is you are most dreading as a result of surgery?