Two questions about everyday life for IC'rs....

[Roandro]

Hi, After a little more than 1 year with IC I'm still working on my informational database and these are two issues I'm currently thinking about.

1.) How many of you -on "good" days - just normal, ok times when you aren't flaring - put a little baking soda in your water, "just in case?" If so - how much and how often ? 1/4 teaspoon in the morning or at night? Every few days? Or every other glass or bottle?

2.) When you get the feeling you have to "go" - do you respond as soon as you can or do you ever try to extend it for 15 minutes or so as some urologists have recommended?
If you can't go as soon as the first "urge" feeling and you have to "hold it" for a while -either deliberately or for lack of facilities nearby - are there negative consequences, such as burning or pinching, and, if so, do they last for a while afterwards?

Thanks VERY much for any information!!

[vm]

I used to wait at least 30 - 40 minutes between peeing. I'd try to stretch it a bit each time. I had heard that peeing too frequently can cause irritation, so I would wait b/c I knew if I went sooner I was only going to pee a tiny amount anyway.

[Briza]

i have never used baking soda to relieve symptoms so I won't answer question #1.
Question #2: The longer I hold it the worse my symptoms will be, so I will use any and every RR available ASAP, otherwise my symptoms (pain, burning, urgency) can go from 1 to 10 in a matter of minutes or even seconds. I am a teacher, so yes, I usually hold it for up to an hour, sometimes more...occasionally will call the office for someone to watch my class so I can go to the RR or take meds in private, but I have found the best defense when in a situation where I couldn't get to the RR til the end of the class period is to drink lots of water to keep the urine diluted and reduce the pain and burning and usually if I keep myself well-hydrated I can prevent a flare when in that type of situation.
For me, I don't think the bladder training "holding" protocol works...since as a teacher I am already put in a situation where I have to use that protocol whether I like it or not, and end up getting increased symptoms and flares from holding it. So for me there have been very negative consequences from holding it, but those consequences were not as bad if I kept myself well-hydrated, so that when I did have the chance to use the RR, I REALLY had to go, not just a little burning dribble. Hope that makes sense:)

[Roandro]

Thank you both for your kind comments.

Briza, do I understand correctly that it you get the "urge" feeling and you are unable to get to a bathroom right away, in order to avoid the negative outcome of "holding it" you will drink water to dilute what is currently in your bladder? Wouldn't that make the feelings of needing to "go" all the worse and make your bladder nearly ready to explode??

Thanks for your help!

[vm]

You might do an ICN search on this page:

http://www.ic-network.com/search.html

using the terms "bladder holding protocol" or "bladder retraining" to get some more information about the practice.

[Briza]

Thank you both for your kind comments.

Briza, do I understand correctly that it you get the "urge" feeling and you are unable to get to a bathroom right away, in order to avoid the negative outcome of "holding it" you will drink water to dilute what is currently in your bladder? Wouldn't that make the feelings of needing to "go" all the worse and make your bladder nearly ready to explode??

Thanks for your help!

I understand what you are thinking about the feeling to explode... but since I KNOW I am going to be without RR access for at least an hour, I ALWAYS go to the RR between every class period. Generally I will drink 10-12 oz of water per class period, and yes, I will feel like I need to go but just the normal need to go, minus the extra burning or pain I get w/ urgency. I do have frequency, but the URGENCY and dribble and burning happens when I don't drink enough water and relieve myself +/- hourly....that sets me up for flares more than drinking enough water...
It is soooo individual and it took me a couple years to figure out what works for me, especially based on my work/RR access schedule. The times I feel like I'm going to explode, then you bet, I call the office for someone to watch my class so I can hit the RR running!

[Claredale]

Roandro, I have used the baking soda tip, but it was a few years ago when I had some burning, but I really worked on my diet when I decided I didn't want to take any chances on triggering anything due to food. I haven't used baking soda or Prelief in a long time. Also, both of my doctors agreed that the "bladder training" was not a good thing for ICers. As Briza said, it actually made my symptoms worse, so I also went to the bathroom as soon as I could when I felt the urge, even after my interstim. At least it was only every 2 to 3 hours instead of pretty much constantly. My doctor advised me to drink as much water as I could, especially when I was flaring to help dilute my urine as well as help me go. I can't tell you how many times I tried to limit my intake in the evenings to keep from having to go through the night. I kept a diary (still do) and I learned that when I did cut down my fluids, my bladder was worse.

Now I take Prosed DS, which has allowed me to finally be able to hold my urine for quite some time. I can sit through movies, go on car trips and ride without the fear of not being able to find a bathroom. Prosed has absolutely taken away any urgency I had left. I don't purposely hold my urine for a long time, but I know that I can hold it The only time I have spasms is if I allow myself to get stressed or over tired, and that normally just is noticable at night. I know that the meds don't all work the same for us, but I am so grateful to whoever mentioned here on this site. I am actually so normal when it comes to going to the bathroom. No more "concentrating" to go the bathroom, plus I go several ounces instead of a weak stream. I haven't had a "2nd void" in almost a year. It is quite common for my body to conquer the effectiveness of meds, but since it's been this long, I feel that I am finally on a great combo of meds that allow me to feel as normal as I will probably ever feel.

[Roandro]

Tracey, how very nice of you to share your experiences with me. Thank you!
I notice you post a lot with advice for many of us.
God bless you.
I will ask my uro for some "Prosed DS" the next time I talk to him. It sounds like just what I need.

[Briza]

Just wanted to add that I have heard that bladder retraining/holding helps some patients so should not be ruled out as something that may help you. :)Like VM, Tracey, and I have posted, it will probably be trial and error, just like everything else w/ IC, unfortunately! But I do think that majority will agree that keeping well hydrated reduces the irritation in the bladder. Best wishes!

[Claredale]

I hope it works as well. I know a few people that it does cause retention on, so just be aware.

Also, thanks for the kind words. I wish I knew who suggested that I try it last year and I would give them a huge THANK YOU! I looked back at the posts, but there were several, so I just thank everyone that brought it up around this time last year!

Hugs, Tracey

[elamar]

utira-c is a generic of urelle, which is similar to prosed. I wanted to mention it becasue for me it works great, and it is so much cheaper! There is no generic for prosed so it was $30 a bottle under my insurance, which was a one month supply. I get the utira-c for $10 a bottle so the savings add up quick! Just wanted to let you know there were other options to prosed. Good luck to you.

[mary124]

Can't answer question #1 for you as I have never used baking soda.
#2- I usually have to go about every hour/ maybe 2 if I am lucky. But when I have the "urge" to go I better go right now, as the longer I wait the more pain i have afterwards- usually within seconds so its not worth it trying to
hold it. I do drink plenty of water during day and early evening, watch what I eat and take my meds.

[floridamom]

I have never tried the baking soda, but i am def. intersted in hearing more about it...

as for holding it...if i hold it AT ALL, that equals horrible pain. as soon as i get that urge to go, I GO. easy as that. I found that when I do need to hold it, then I literally cannot walk due to the pain.