got to go, got to go right now!!

[gypsyjoy]

I have never tried to do a poll so here goes...............

How mant time do you have to void within a 24 hour period of time?


1. 5-10
2.10-20
3.20-40
4.40-50
5.50-60
6.more than 60
Just wondering if I am in the average range.
Gypsyjoy

[yvette]

I posted my average before I got Interstim and got my diet under control...(it was more than 40x per day :yikes:


Going so many times a day was making me fricken nutzzzzzzz :loco:

Anyways I don't know how many times I go now (on bad days it still can be every 5-10 or 15 minutes)

[gypsyjoy]

Yvette, I know what you mean about going nuts. I'm in there about 40 times a day sometimes even more.
I really think I should by stock on the toilet paper company.
JOY

[Dixiefireball]

i go anywhere from 7-10x a day when not flareing. when flareing mostly from a uti. it verys.:rolleyes:
sending you all hugs and prayers
Rhonda

:dogrun: :D

[gypsyjoy]

Dixie, I would give my right arm to only have to go 10 time a day...I do that at night when I am trying (in vein)to sleep. Has it always been like that for you with IC. How long have you had IC.
JOY

[Teri]

Since I have eleminated almost everything from my diet because of my pancreatitis I go about 20 times a day, with is a whole lot better than when I was going ever 15-20 minutes........

Right now I am in the middle of a UTI from h#$$ and am not only suffering from that but massive retention too.......I'd rather go 20 times a day than live with this retention any day:toosh:

[gypsyjoy]

Teri, Did you realize that was your 1000th post?:D
I am sorry you are feel yucky, I hate it when I have UTI's.
Right now I am doing both every 15 minutes and then a tablespoon worth (if that). Basicly it has been a really go week for me. And it doesn't sound like it has been for you.
Sending you a heart felt hug.
JOY

[gypsyjoy]

Any more type O's on that last post..................GEE, maybe I should take another pain pill. I think I need to go to bed.
JOY

[icnmgrjill]

Great question! I'm about 10-12 times a day.

Jill

[Audrey Rose]

I average about 11 times a day on good days and about 20 times a day on a bad days. On DMSO days the first few hours after I expel the treatment, I have to go every 15 minutes and it is so annoying. My heart goes out to those of you who live that every day!!! :kissing: I pray you get relief soon.

:grouphug:

[CeeCee]

I just started the voiding diary so it's easy for me to know how many times a day I go.

I am in the 25-30 times a day when I'm in terrible pain.

I have most of my pain in the lower back area. When it is in the front and I can feel burning in my bladder is when I go this often.

On a "normal" day I average around 15 times a day. But frequency isn't really the problem I've had. It is the pain. I'm not sure how much I should be voiding at each time. I bought a measuring cup for my bathroom but it isn't in cc's. Most of the time it is 1/16 to 1/4 cup. But I have noticed the urgency is the same whether I measure 1/4 c or 3/4 c.

Is this same for anyone else?

CeeCee:)

[kelly McC]

Average day 15- 18 and a bad day its been 21-31 times...:(

[gypsyjoy]

I am in terrible pain or so drugged on pain meds it is unbelievible. I had to go to the dentist today which is a hour away and I had to stop to void 4 times. Then I had to wait 1 hour to finally get X-rays, ect. By the time he had put in to new fills ( total of 2 hours) I had been to the rest room 8 times . He was really good about everything I explained my IC and told him when I say, "I HAVE TO GO" I mean now not in 5 minutes. On the way home my pain was to the point of tears I felt like I was going to pass out it hurt that badly. I have a pretty high tolerance to pain, but this is even meaner than I am.:yikes: I couldn't take any pain meds until I was half way home cause I will not drive on this stuff it just makes me too stupid. It has gotten to the point that I don't want to leave the house. OMG I HATE THIS!!!!!!!!!
Just letting off a little steam.
:)
JOY

[CeeCee]

Gypsyjoy,

I know what you mean. My uro is three hours away from me. The last time I went I was caught in construction and it was over an hour before I could find a bathroom. (I have the travel john now)

My normal blood pressure is very low. Something like 90/65. By the time I got to the dr.'s office and they did the routine check it was 130/95. I have never had a reading like that. Needless to say the return trip wasn't much better. But it is back to normal now. Thank goodness!

I read the stories here and I think OMGosh she is suffering as bad as I am or worse. Not that I want anyone to but at least I feel like somebody really really understands for a change.:hi:

CeeCee

[ICchell]

Gypsyjoy,
Im sorry that your in so much pain!!:grouphug: Hope you feel better soon!!:kiss:

I go from 10-12 times a day...I just finished my urine log and it was up to 18 times a day!
Michelle

[gypsyjoy]

I really go know how much this sucks. I have always had good health, until about 18 month ago. But as I think back I think I might have had IC for about 4 years. Who know ....all I can say is if you ever need any one to talk to, vent at or just B.... (you what I mean I hope )I am here . Right now I have not much else to do than chat and listen.And enjoy both.
Hugs to you !
JOY

[DebbieB]

I go about 5 to 7 times a day that is including at night having the InterStim Implant for almost five years it has been wonderful..
I was going 63 times a day before I had the InterStim Implant and that is a great improvement in my life.. :pray:

Debbie :thumbsup:

[TX1]

DebbieB what is an interstim? I go sometimes about 60 times in a 24 hr period and would love to know what it is you had done. Thanks TX!

[DebbieB]

Hi TX1;

You can go the web site at www.interstim.com and look at what is it all about..
This was the very last resort for me as I did every kind of meds and treatments before doing the InterStim Implant..

Debbie

[BobbieB]

Most days I usually dont' go over 5-6 times per day and including night. It's usually once at night about 4:30 or 5:00.

[amethyst79]

I average 43-65 times :( I usually have to wake 3-5 times during the night. Talk about sleep deprivation!

I am jealous of the 5-6 times!!!!

Debbie... thanks for the InterStim link... I am hoping my uro will discuss it with me on Monday!

Chelle

[Sandy N.]

I go anywhere between 10-15 depending on if I am in pain or not. but unfortunately I always feel like I could go..Not fun

[dyno]

Chelle,
I wanted to jump in here on this. As far as the Interstim goes, you need to read the link Debbie sent you and also read on the boards about the successes and failures. You are just getting diagnosed if I remember right. Interstim when approved by the FDA is suppose to be a last resort treatment after the more conservative treatments have been tried and failed.

It is always beneficial to learn about treatments but this particular one is usually used last. Good Luck.

I usually go about 15-20 times a day.

[amethyst79]

Hi Jolene

Yes, I'm still in the diagnostic processes here but have been being "treated" for "overactive bladder" for well over a year. We've tried cutting all caffine, being a diuretic, Detrol, Detrol LA, Ditropan XL... tried "bladder training," even had my bladder stretched... only thing other than the InterStim we haven't tried is physcial therapy.

Chelle

[dyno]

Chelle,
Have you tried any of the bladder installations, Elmiron, Hydroxyzine, Elavil? There are several bladder cocktails that can be used. DSMO is one, Heparin is another, sometimes a combination of them. You will find many of us have a combination of medications and diet. For me, the Hydroxyzine was the answer, along with diet and Prelief.

If you try Elmiron, it can take 6 months to a year to see if it will help. The bad thing with IC is many of the treatments, installs included are not a quick fix.

Many insurance companies will not cover Interstim unless many other treatments have been tried first. It depends on the company.

I am assuming you have read about all the different treatments in the handbook, if not here is a link and it can give you a lot of info.
http://www.ic-network.com/handbook/

The other thing that is good is a book that is sold in the ICN shop, The Interstitial Cystitis Survivial Guide. It is very good. I bought it and still go back and read it at times.


I hope you find a treatment that works. I will be happy to answer anything I can. Feel free to PM me if you want. :)

[MakinIT]

My piddling prowess is at about 25 times a day, 4-5 times at night...But it is much worse when I am in pain...this is why we are discussing the nuerotreatments...Ugh...I got a call from my pain doc yesterday...they just submitted a pre approval for me with my ins. company. :pray:

Ihope we all get the relief we need, eh?

[curlycue]

Hey we sound like the comercial for the Peeing drugs. I dont know what the name of the drugs are.

I go around 10-15 that is on a good day. If I am stressed I notice I go around 25 times. I try not to get stressed. I had to take my mom in for a Biopsy today and some kid at the hospital fliped the emergency alarm and the fire poeple had to come and I was wigging. I started going to the bathroom every 15 minutes. It was awful.
Ruth

[saraeyates]

Wow. Some of you guys go a lot less than I thought was normal. I go at least 30 times a day, and at least 3 times a night. I thought that was good, especially since on a bad day for me (about three times a week) it is closer to 45 times a day and 5 times at night. Kinda puts things in perspective for me. My doctor suggested interstim to me some time ago and I quit going to him because I thought that pain was the biggest problem for me and didn't think that my frequency was that bad. Obviously, I was wrong. Maybe it is time to get back in touch with him.

[MakinIT]

Curly cue: I've tried those meds...they make many people with IC have difficulty releasing that pee....(Maddening as can be to sit on the toidy in agony cause you have to go, but can't) People always ask me why I don't take them...Hard to explain to someone with a proper functioning bladder why that won't work.

Sara: I hope before you go the interstim route, you try all the conventional treatments. I have, that is why they are now going to nuerostimulation...(a little different from an interstim in that it just treats pain, which is my biggest problem.) I do pee alot but I'd much rather get rid of the pain.

Good luck...Tracey

[Sarojini]

Lately I am going 20-25 times a day. It is REALLY annoying -- I just had the hydro, then 6 DMSOs, and I'm on meds, and I am still peeing often. I did just get over a UTI, though, so I"m hoping it will settle down soon. I am likely going to go in for a few more DMSOs though, because it seemed like they were helping when I was going for them before! :)

Atarax has helped me at night, now I only get up once, and I used to get up about 6 times. But I can't take those things in the daytime because I would pass out on the job! :rolleyes:

*grumble*

[tigger_gal]

I would give my right hand, my eye teeth to void 10 times a day.. Befroe I got my interstim I was at 25 to 30 on a good day. day.. I still void about 15 to 18 times a day on good days..... I know your thinking you have the interstim..... don't worry I have been under a great deal of emotional stress over the last 6 months and sure it has alot to do with that..
Brat

[MakinIT]

I take atarax as well.....50mgs at night. I used to take one because I was so dopey...but now I'm up to two...i can finally tolerate the two. It has helped me at night, but when I wake up and have to pee, I realllllly have to pee. there better be nobody else in the can. I still wake about 3 times, even on the atarax, but it beats 7-8 times like before the atarax. :dogrun:

Anyway, good luck all.

[curlycue]

Hey does Atrax really help you ladies? I have asked my uro to give me some and she said that its not really for IC people ? I think she is hiding behind a rock cuz I hear alot of people that take it?

Thanks
Ruth:hi:

[MakinIT]

curlycue

from what I've read (and I've read alot) that is one of the first line treatments they do.....especially if your biopsy showed a high number of mast cells. Now, my GP didn't really know what it was but the Uro did and that is one of the two drugs she prescribes for me. (The other is valium, to control the spasming in my bladder) She doesn't do much for "pain" relief, because my GP is prescribing MS Contin for me and is not afraid of any reprisals from any government agencies. (This is why sooo many docs are afraid to prescribe anything in the Class II controlled substances, they think the feds are going to accuse them of being drug dispersers and take their licenses...)My GP has some kahunas and feels that patients with IC pain suffer as much as cancer
patients in the visceral area....we may not have to worry about dying from this disease but it is a very painful disease and most docs are afraid to give us enough relief...Enough said...my soapbox lately, because it breaks my heart to read of folks suffering more than they need to.

Take care and good luck...oh, and I'd see another uro if he/she seems to think atarax is not for IC patients....print of the info from WebMD about IC and see what it says for treatment. I believe that is listed, if not there under another site "emedicine" which is written in more doctorese.

Tracey

[Sarojini]

I take Atarax at bedtime. I get up once a night since I began taking it... before, I would need to get up 4-8 times a night.

It helps!!

[curlycue]

That is really sad that to have to learn things from this site that DR should all ready know? Right

I am going to speak with her regarding Atarax. I think its really dum that if a person is suffering and in pain why not try and help them and give us something that will HELP? I guess we have to be dying?

I think I am going to have to take a trip to see dr.Lowell Parsons He is one hour away from me. I have always been kind of Lazy to drive all the way over there but I guess I am going to have to take a trip.

Thanks Ladies
Ruth:hi:

[MakinIT]

It's not like Atarax is a class II controlled substance...not a big deal to try.

Tracey

[dyno]

Curley Cue,

Here is an exerpt taken from the Guest lecture of Dr. Parson's. You could go there and print off the whole thing if it would help your Dr. to see it in print.

<icnmgrjill> You've also championed the use of hydroxyzine with or without Elmiron. Can you tell us more about your recent observations??

<drparsons> For years now, I've had both drugs and used them extensively in several thousand patients. I would simply summarize by saying that Elmiron is the cornerstone to rebuild the bladder surface but allergies are frequently what is breaking it down and you need hydroxyzine for that. Give me hydroxyzine and Elmiron and I can make 90% of my patients better and keep them better. At least 70% of patients need both medications and they will always need both.

Most of my patients tend to stop the Atarax but they will pay a price if they flare during the allergy. They will take three months to really improve again. One bad allergy flare and they usually listen to me. You only need a low dose hydroxyzine.. 25 mgs at bedtime. I think that it is far more important than Elavil.




I also took the IC Survivial Guide that is sold in the ICN shop with me to my first urologist appt. It talks about Hydroxyzine(Atarax) in there also. I take 25 mg. at bedtime and if I am having a bad day I will take another one then. It has made a big difference in my life.
Jolene

[MakinIT]

That is excellent validation of the use of the drug....I really don't understand the hesitation of that doctor to use atarax. It has made it so I can sleep better, I still get up alot at night but much less than I used to .

[curlycue]

Thanks Ladies,

I just finished reading the whole lecture that Jill and Dr Parsons gave and I am printing it so I can give it to her next Wensday.

You guys are great not only did you give me the info but you guys are proof that it really does work.

Thanks
Ruth:hi:

[Coleen]

I would say I void and this is a good day, about 10-20 times a day. That includes nighttime also. Worse when In a flare. I was diagnosed with a cysto/hydro in Jan.... Ive been on Elmiron, Ditropan, and sometihng I take at night. I havent taken any of the meds I am suppose to or how im suppose to. I guess I was hoping it would go away. Noone wants to help with my chronic back pain So I guess I thought Id be stubborn and not take any meds,,,,, Im starting today with a new schedule of meds the way Im suppose to. Its already been three months and I should be feeling a lil better and now its my own fault Im not.... Live and learn.

[Coleen]

I would say I void and this is a good day, about 10-20 times a day. That includes nighttime also. Worse when In a flare. I was diagnosed with a cysto/hydro in Jan.... Ive been on Elmiron, Ditropan, and sometihng I take at night. I havent taken any of the meds I am suppose to or how im suppose to. I guess I was hoping it would go away. Noone wants to help with my chronic back pain So I guess I thought Id be stubborn and not take any meds,,,,, Im starting today with a new schedule of meds the way Im suppose to. Its already been three months and I should be feeling a lil better and now its my own fault Im not.... Live and learn.

[greense]

I used void about 10-20 times a day depending on where I am and what I am doing. This number has reduced greatly since I have changed my diet and am trying to retrain my bladder.

But on bad days I still go every twenty minutes. The worst thing for me is the urgency. I started measuring (bladder diary) and found that my bladder can hold about 14 ounces (that I know of). Usually I void 6-8 ounces but on bad days I void 2-4 ounces each time. But it feels like my bladder will burst even with such a small amount or urine.

The feeling of urgency hits me suddenly and usually when I am not near a bathroom. I hate it! But am learning to deal with it effectively!

God Bless,
An:D