I am a 3 time cancer survivor, so I am used to challenges and toughing it out but this is on another level! Any ideas on how to handle the pain/discomfort from non-functioning bladder? I have cut out all liquids except for water but I am craving everything I shouldn't have. Is it okay to have just a little taste of coffee, tea or soda?
tea and coffee should be fine would leave soda out though as full of nasties esp you being USA side cola has acids and many have A sweeteners which are not good for you esp.
But need plenty of fluids worst thing is limiting them
Thanks OSCARBRAVO!
I am not a big fan of water but have only been drinking it. This is all so new to me and I just don't want to make things worse. I am trying to find the balance of what amount of fluid is good for me, sticking with about 8 glasses of water a day.
Do you ISC or have indwelling?
The urologists have not given me an official diagnosis. My symptoms are complex because I have both overactive and underactive bladder. I started having urine retention after a UTI and kidney stone in December. In January, I had a urodynamic test done and it showed that my bladder is not functioning/contracting at all. The only treatment they offered was intermittent self catheterization. I am also having trouble with weird heart issues now.
Get lemons and limes slice them up and put in water be creative can make jug up or also get oranges
I agree to stay away from carbonated beverages like sodas. Perhaps herbal teas would work nicely right now for you? Just drinking straight water would get pretty boring - so something that has some flavor without caffeine or carbonation should probably work well and not cause extra problems for you. You might check with your doc and see if something like Gatorade would be OK, too. Just watch the calories 
I surely hope things can get figured out for you. I hope that you had a good IC teacher and this is going well for you and helping you to empty thoroughly.
Hi No Gatorade is poison! we had that for when was cycle racing then found out junk in it so dropped like a rock of edge of Torry Canyon!
Need to drop sugars as much has if risks of UTI's as they love sugars
Get a pile of lemons and limes some of them in a glass of water even better is to make a jug/bottle of mix then drink as
Good to know about eliminating extra sugars to help decrease UTIs. Thanks for the tips. This is way I wanted to find a place to chat with people who are living with similar challenges since medical professionals help has been limited.
Thank you for response. I did try some diluted cranberry juice one day and a cup of decaffeinated herbal tea another day. Doc hasn't been much help, that's way I turned joined.
Have had mixed results with IC. Instruction was basic but have other medical condition, that presents physical challenges, so I basically had to figure out a set up on my own. Was afraid it was me/my fault because I wasn't doing it right. Was told I am doing it correctly, after embarrassing demonstration, but not emptying completely. Stumped doc and nurse.
I would think the diluted juice and herbal tea is best. I was just trying to think of options - not "poison" you with the gatorade! You definitely don't want to be dehydrated, and you not drink more than you need to. Trying to keep it interesting and not cause problems is a challenge for all of us. I am addicted to Diet Coke, which I know is awful for me on multiple levels, so I try to limit myself to just a few swallows a day.
Have you visited the Underactive Bladder Foundation (underactivebladder.org) ? They have been around for quite a few years, doing a lot of research in this area, and may have some resources or a referral for you. It's just another idea for you.
What I would do in your case, and this is just my perspective, is to limit it. I only drink caffeine when I wake up, and I try to limit it to say 8 ounce a day. It does cause some bladder issues but I find when it is that early, it isn't so bad *I drink green tea*, I also do ISC and feel it can be very helpful. If you need to vent ever, you can message me. Sometimes getting on a cathing schedule can help
Looking for someone to identify with and share experiences and maybe even a little hope.
How long did it take for you to feel confident?
From incontinence to an artificial urinary sphincter.
Considering an AUS
New here