I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: hillary on September 21, 2013, 09:04:22 AM
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I have had a serious bladder disease called Interstitial Cystitis for many, many years. Along with severe pain, it also makes you have to pee very frequently and urgently ( it is not unusual for I.C. sufferers to pee 60 times a day).
My neph (who knows very little about my bladder disease) says that eventually, dialysis patients stop producing urine. I've been on dialysis since July and I am still peeing all the time. I have to literally fight with the nurses to unhook me in order for me to go pee, and then hook me back up. It's a terrible pain in the ass to do this and I know I'm not getting a proper cleaning and I'm also getting too much extra fluid because they give me fluid each time they hook me back up. It is so unpleasant to have to beg to be taken off the machine in order to pee. >:(
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My wife had the same issue when she was in center. Yes she still produces urine after over a year on dialysis. So it may continue for you. Its actually beneficial to continue to urinate as less fluid needs to be taken off during dialysis.
We do home dialysis now and if she has to urinate we have a baedside comode I can pull up to her chair and she can use without having to stop the dialysis machine or unhook her. It really makes it easier. Is there any chance you could get a privacy curtain around you and then use a urinal while you stay on the machine? Just a thought..
Also try avoiding fluids for a few hours before dialysis. (or foods with a lot of fluid) There are medicines that can calm the bladder also and reduce the urge . you can ask your doctor. Good luck.
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The first thing i did was ask for a privacy curtain and commode or bedpan and I was denied all.
My disease cannot be cured or calmed by meds or avoiding liquids. It's not anything like over active bladder. It is a disease which has no cure and no effective treatment.
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There may be some help if you are willing to look beyond western meds. WeiLab.com has Chineses herbal meds and one formula is called Urinary bladder formula. It actually is for Interstitial Cystitis. My wife used it long ago when she had recurrant UTIs and it helped her a lot. You could contact them by looking on line at WEILAB.com. The 2 owners are Ph.Ds in Biochem and once worked at Mass. gen Hospital in Boston. They have both traditional Chineses background , and combined with modern Biochem.
If you ask for a consult from them and explain your situation they can recommend what product might work best , either the one I mentioned or perhaps another. I have used several of their products on myself and some of my patients with some sucess.
Obviously you will need to talk to your own MD about this too, but at least this is an option. Western medicine cant answer every need. Sometimes we have to look elsewhere. I have no financila stake or affiliation with Weilabs. I just have some experience with their products. Again dont do anything without talking to your regular doctor also.
Good luck.
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That sounds very frustrating. They don't want to give you a bedpan and they don't want to unhook you? What do they want you to do? This is an awful thing to have to resort to but have you thought about Depends?