Hey guys need some advice

[dwdwdw]

Hey,

I havent posted here for a bit but ive been reading up on the boards several times a week.
Just wanted to give a little update and ask a question or two if that is okay:)

I have been on Elmiron now for 3 months, I havent seen any noticable change yet and its really easy to just want to give up on it, but my physician who specializes in IC has told me it can take 6 months or so before i see any change whatsoever, he did tell me it would take at least two months, so I guess I had my mind set on that but it was wishful thinking, bestcase scenario.

My symptoms are pretty bad, I actually started feeling a little tiny bit better for 2 or 3 weeks but then it went through the floor and got worse then its ever been. Not very encouraging to feel worse then i did before i even started the treatment, but I have to see that it was indeed a little bit better for a while, maybe this is just how it works before it improves more.

The real reason i am posting here is because of a procedure they are going to try on my this monday.
I am wondering if anyone has ever had it done, or know anything about it.

They are going to try and give my bladder "a break" by connecting two tubes, one into each kidney to drain the urine straight out of the kidney for a couple of days/weeks.
They have told me this procedure is fully reversible, they can just disconnect the tubes at any time whitout any damage to the system.

I just found out my wife is pregnant a couple of days ago, which makes me happy and relieved, since i was scared this disease had maybe effected my fertility somehow.
It also stresses me out, since i am now on a time limit to feel better so I can be there for her.

That is why the doctors have decided to try this procedure, I hope it will help me.

Besided that I am just still taking the Elmiron no matter how gloomy it seems.

A couple of weeks ago, I could actually play a little basketball even everyday, and I could sometimes hold my urine for 6 or 7 hours once a day, inmajor discomfort however but still it was a major improvement.
It stayed that way for 5 or 6 days and I started getting my hopes up, I could do a few things again and such.
Then it just crashed through the floor and now its been worse then ever for the past 3 weeks so then those days dont really count for much.
Now I have to struggle to hold it for 45 minutes, and this is with no dietary changes, no nothing it just happend.

Maybe its just flucuating and I just have to struggle it through I dont know but its so hard.

Just wanted to let you guys know Im still here, and ask about the procedure.. :)

Hope you are okay and had a good summer.

Best regards
Daniel

[laurarankel]

Hi Daniel,

I'm new here and don't really have any input other that just to let you know I will keep you in my thoughs and prayers. i hope this procedure works for you. Maybe it will be worth it just to give you some much needed and much deserved relief.

:angel:

Laura R

[Silverfern]

:hi: Daniel

Good to hear from you again. Congratulations on your wife's pregnancy.....something lovely and positive for you both to look forward to in the coming months.

I can't help you on the procedure either, but if it were me I would be giving it a go. Seems to me you haven't got much to lose. Don't give up on feeling better again either....if you've managed to improve once it can happen again.

All the best.

Hugs

[dwdwdw]

Thanks for the encouragement.

I was indeed feeling better, even if it was just for a week or so it was better then where I was, its just depresseing to get worse when you think you are on the right track.
Im going to keep taking the elmiron for at least 6 months and hope it does kick in, Ive heard it can take its sweet time!:bonk:

[IC_SUX2006]

Daniel, I don't know anything about your procedure, but I can tell you I've been on Elmiron for over 2 years and I really don't know if it's helping or not. I was diagnosed with IC after a cysto/hydro procedure in the hospital in 2004. I still experience awful flares, usually a burning, aching, stinging sensation in bladder that radiates out into other areas of the pelvic region and I am usually bed-ridden for a day or two. I ask myself over and over again "what did u do to yourself?" It's probably my own fault for the flares [i need to follow the diet plan on this site] unless there is anyone out there that might know the possible causes of these flares besides diet?....best of luck..........mike

[ICNDonna]

I hope you feel better very soon --- and I don't think it's a good idea to hold it very long when you need to go --- and definitely not until the pain is horrible.

And congratulations to you and your wife.

Warm hugs,
Donna