Living in Hell

[ZRHONDA]

Has anyone else had their bladder fail? In addition to this horrible post concussion headache. I no have to wear a catheter bag. They don't know if my badder will come back or not. Between the lupus and the APS I just want to give up. I'm so depressed I can't stand it.

[Peecue]

Yes I have been there, but I don't think it was to do with APS. I had a condition which caused inflammation of the bladder called Interstitial Cystitis and I eventually decided to use a catheter instead of going to pee 60 + times a day. Eventually my bladder pushed out the balloon and the surgeon decided (and it has been the best for me) to give me a stoma. I have had my Urostomy since 2002 and apart from a few teething troubles at the beginning My life has been given back to me. If you want to pm me please do x I didn't get a diagnosis of APS until 2012

[ZRHONDA in reply to Peecue]

What is a stoma?

[Peecue in reply to ZRHONDA]

It's an operation where a small piece of your bowel is taken out of position and the rest reunited, then they took the tubes which took urine from my kidneys to my bladder and inserted them into this new pocket, which still has its blood supply. This is the stoma. This is brought to the skin surface and is still wiggles like it does inside you (when it would push digested food along) but instead pushes out Urine. I put on a clean pouch over the stoma every 2 days. This pouch collects the urine and I empty it down the toilet. Hope this helps understand Urostomy? As there are different stomas for different reasons

[MaryF Administrator]

Hi there, sorry things are feeling so difficult, I hope you have some nice friends you can lean at the moment to cheer you up. Will you be going back to see the consultant? Wishing you all the best. MaryF

[ZRHONDA in reply to MaryF]

Yes, I have to see a urologist and a new rhemotologist. I'm so sick of being in pain all the time. I h as be an appointment tomorrow with a new pain mgmt doctor. They said the post concussion syndome can last last for months.

[MaryF Administrator in reply to ZRHONDA]

Well here I am with my Christmas wand trying to wish it away fro you! youtube.com/watch?v=T1N7X1W...(Not working as expected?)

MaryF

[ZRHONDA in reply to MaryF]

Thank you Mary

[ZRHONDA]

Thank you. I don't have any family support as I'm estranged from my family.vthay don't believe In Lupus or APS and refuse to educate themselves about it..

[Peecue]

So sorry to hear that. This is such a lovely group and I've had such help from some really lovely people. I do hope you and your urologist and rheumy helps you get to where you need to be.