How do I cope with this?

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fishkeeper

I do I cope with this my bladder problems have been going on for over 8 years. Been using a catheter for 8 years. Two years with a normal catheter, and 6 years with a SPC. I have no bladder control, no urge to pee. I leak urine from the urethra constantly, and have to wear large pads. I have really painful catheter changes; it bleeds, I have had 5 UTIs this year so far. Three site infections in the past two months. I am in pain 24/7.

I am in line for a urostomy operation when they have completed all the tests. How do I cope with all of this until the operation? I am 55 in two weeks, but feel like an old lady of 90. I can't go anywhere because of leaking, pain, etc. I want my life back, and have a quality of life. All I want to do is sit in a corner and cry. Life feels like a living hell. How do I cope with all this, and the longer it goes on the more upset, low, isolated, frustrated I feel.

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mooza

You poor darling. I do hope you're getting an ostomy. It will change your life, I'm sure. :)

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iMacG5

Hi fishkeeper.  I'm not qualified to advise you from the medical standpoint but I wonder why you need to wait and for how long.  I'm a guy so things are different there but there's no gender to pain and suffering.  I hope your medical people can prioritize the attention you need and give you your life back.  I know we can't rush some things and we definitely don't want an ostomy performed by an emergency room surgeon but, maybe, some cautious, polite pressure might help.

Wish you the very best, quickly,

Mike

Past Member

I had a similar experience after radiation and before my surgery, which was to remove rectal cancer. The incontinence I experienced for the 2 months-ish between the last radiation and going in for my permanent colostomy was almost daily.

Knowing it would end didn't always help when I would shit my pants, but I had realized earlier in my treatment that once I learned how to work "my gear", my QoL would be as good when things were better.

I also have Crohn's, which has its own...skillset(s), particularly when it comes to coping...

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