Am I really better?

[april ryan]

Hi All,

Although I have complained a lot lately, there are some things that I probably should celebrate for...

I used to go to the bathroom about 20-25 times a day and wake up at night and have extreme urgency in the morning. Every night took me ages to get asleep because every 10 minutes I had urgency again...

After my hydrodistension though, and bladder training, I go to the bathroom about 6 times a day since then, sleep alright and hold a good volume.

Before the operation my max capacity was 300cc, extended to 600cc. I confortably hold until 400cc and after an instillation I reached my record of 800cc!!!

The pain is better but didn't go away, but the lack of frequency is a good sign according to my urologist.

I guess my question is: is this goal that I reached in the last few months likely to last, or after a certain period from the hydro frequency and urgency come back again?

It would be precious for me to have some of your opiniions...

Thanks :)
April

[april ryan]

I forgot to say: my hydro was 3 months ago.

[formom]

Hi there! I heard that the hydros sometimes last for 7 months and sometimes longer for people. I think ICNDONNA can probably be a good source of info in that department if she logs in. I hope you continue to have good results and will keep you in my prayers:)

[NewLife]

Hi April! Congratulations! I think that staying better is about doing a combination of things, so I'm sure that staying on the diet and continuing to do the other things that you are doing will help keep you healthy even after the cysto effect wears off.

[TeriCH]

I hope this helps. I've had IC symptoms on and off since 1994. My first big flare was at 24yrs old (1994). In the last 14 years the majority of the time I've been in remission (no symptoms). Some of my flares last for days, some weeks, a few months, and the worst 1 year, with symptoms on and off. I will say during those times I was not consistent with the diet and not on any medication. I had to go to many urologists to finally get a diagnosis of IC, b/c I showed no pinpoint bleeding or ulcers when they did my cysto/hydro. My last remission lasted 5 years before I flared in May 08. I decided to get aggressive, found myself a uro/gyn who is an IC specialist and went on elmiron and atarax. I've been doing really good on my meds, with a bump in the road in Nov. I had a harder time dealing with all the pychological issues from IC. My biggest fear became not feeling like I had control over this disease. Because it waxes and wanes I would find myself getting so anxious about when I would flare again, even when I was feeling good. I think what has helped me the most is having a game plan for when I flare and realizing, yes it sucks, but it will get better. I also appreciate every day I feel good, and I've stopped getting so angry on the days that I feel horrible. I hope this helps, and I will keep my fingers crossed that you keep getting better and better!

[april ryan]

Thanks :=)

Much appreciated..