For those with the implant...some???

[Nancy R]

I know this is very early to be asking about the Interstim because I have only had IC for about 10 months but so far I have tried hydro (didn't work), DMSO (didn't work), am on Elmiron/Vistaril for 6 months (questionable results), can't take detrol, elavil etc b/c they increase my retention. I get the most relief from pelvic floor therapy and ativan, but still suffer quite frequently from retention and the "always need to go" feeling. How long did those of you who went through with it have IC and what other treatments had you tried? Thanks for the info.

-Nancy R

[This message has been edited by Nancy R (edited 02-17-2001).]

[Teri]

You have a very long way to go before interstim time my friend. The interstim is a last chance surgery. As of yet, it's not even approved for the treatment of IC. I had exhausted 14 years of treatment before this surgery was even recommended to me. Now that it's so out in the opened it seems like a quick fix. It's not. It's major surgery and I will wear a piece of metal in my fanny for the rest of my life.

Please, let your dr use up all of his options before thinking of having something like this done.

tons of hugs teri

[Meghan]

I recieved my interstim implant on May 8, 2000. I had been diagnosed at age 16, in Feb 97. During that time I saw multiple doctors, had pelvic surgery, appendix surgery, gallbladder surgery, and other things. They were all necessary at the time.
Before interstim, i tried multiple things: elmiron, atarax, other oral meds, DMSO, other bladder installations, hydro, ect
when my doctors wanted to do clorapactin, i changed docs and within a few months decided to try the interstim
it was a difficult choice to decide if I wanted to try interstim, but is has given me my life back. I am back in school, and while i am currently fighting severe systemic mastocytosis i am able to cope with life and school work
feel free to e-mail me at [email protected]

[Sandy]

Hi, I had almost the same symptoms as you. The feeoing of having to go all the time taken off elavil0other drs figured it was the problem grant you Elavil does cause retention. I was on various anti biotics for awhile and self cath and spent alot of time wearing a foley cath so I could get some sleep. I tried DMSO but to no avail and it cause a lot of burning in my bladder. Also try Cysitat and that seemed to help for awhile and was on Elmiron for over a year and half. Ikept trying everything. hydros, cystos until and detrol and many anti spasmodics. The only antispasmodic that worked for me was Opium Belladonna Suppositiories. I was on Demeraol for pain and Torandol and sometimes Morphine. I know this sounds so discouraging but if you feel you are getting no where with your uro try another one, I went through 5 till I got the one I have now, and he is very good. I have the implant and it has helped me. I still have some bad days, but after three years of what I went through this has helped me alot as long as I stick to the proper foods and not smoke and not take any medicines with Narcotics in them.
Narcotics practically stopped my bladder. Do you know how to self cath? I learned and it is very easy. It is important to get all the urine out if it is aggrivating your bladder and drink lots of water to keep thing diluted and check with your dr for UTI's and bladder infections if you feel things are getting worse. I can always tell if I have an bladder infection as I have to go more often slow stream and slow start. The I have to cath The I go ot the dr and I usually have a small infection. Small of large it seems not to matter thye all aggrivate you one way or another

Sandy

[rhonda]

I had IC for about 5 years before having the interstim. I went through DMSO, heprin, DMSO/heprin cocktails, elmiron, double dosage of elmiron, detrol, visteral, 2 pain clinics, antispasmatics, anti inflamitory drugs, prydium and close too 30 hydrodistentions. The hydrodistentions helped me with my retention. When they stopped working and I went a full year with total retention and the doctors were considering a 'bypass' of the bladder.

[DebbieB]

Hi Nancy:
I have been ill with bladder problems for over 18 years , I done everything possible in all kinds of treatments, had 13 cystoscopic, 2 hydrodistention I done the instillation of DMSO \Heparin, Elmiron and every kind of medication you can think of..
I have PFD and the only thing that really help me out was doing a couple Uroynamics testing and biofeedback , by doing this I was able to find out that my urethral pain I was having from the urethral tube being parailized and I stop peeing and I went to so many , many Urologist to found the right one that knew what he was doing..
After reading and getting all the imformation I could get and finding the more knowledgeful and experience doctor I could find to do the InterStim Implant and when I had the Implant in overnight and the next day is was turned on I was able to pee all on my own within the hour of being on...

I would say if you are able to get as many treatments and try everything as possible and all fails and then the InterStim Implant should be the only last resort..

~~~Debbie~~~

[Nancy R]

Thank you everyone for all of your detailed responses. I know I am not ready for the Interstim but I like to know what my options are down the road. I feel very discouraged when I read about how people respond to hydrodistensions and DMSO and Elmiron. I mean to say that I am happy for them of course but it makes me wonder about my situation as all of the things I have tried seemed to have no effect on me one way or the other, good or bad, with the exception of the detrol which was BAD retention. ooooh I don't like that medication Anyway, I am meeting with my uro on Thursday but he doesn't seem to have a lot of tricks up his sleeve. I feel like I always have to be the one asking for us to try new things. Well, perhaps I am writing all of this in the wrong place. I just wanted to thank everyone for their replies and assure you that I too will exhaust all of my other possibilities before thinking about the Interstim.

-Nancy R

[Teri]

Nancy~just to let you know, EVERY hydrodilation I had did NOT have the same effect so please don't give up on them unless all of them have failed to give you some relief. I was treated for 10 years with them and they worked, than they stopped working. I had one done in Nov and that was the 1st one in 2 years and I've been in remission since.
One thing we ALWAYS have with IC is hope.....hugs my friend~teri