Need help and experience

[green eyed lady]

Hey all...I have interstial cystitis. It has been a hellish 7 yrs., first trying to be diagnosed, thinking I was crazy and then trying to find the right treatment for me. I've had 3 hydro-distensions which gave me short term relief (average 1 mth), I've been on elmiron 100mg 3x/day...detrol la 4mg 1x/day...wellbutrin 200mg 2x/day and all with no great response. Plus various pain meds---vicodin, percs, and oxycontin. When it gets real bad I've recieved hydromorphone and adivan.

I was refered to "the go-to doctor", he's the one you see when everything else has failed. So the first thing he did was change my meds...elmiron 100mg 1x/day...enablex 15mg 1x/day...prosed-ds up to 3x/day as needed...and we stayed with the wellbutrin, and the percs 5/325. to be taken 1-2 every 4 hrs. this does help keep the pain at bay.



This particular doc thought it might help to temporarily implant an interstim in my lower back---I recieve electrical impulses to the sacral nerve by which I control with a device that hangs on my belt loop. After a weeks time it was removed and I hadn't recieved any of the benefits. My uro (God bless him) promised me he wouldn't abandone me, however, he wants to surgically implant the interstim permantly in my back (end of mth) and instead of having 2 wires coming out my back I now will only have 1. He says I have about a 30% chance of getting relief from this. At this time he wants me to stop taking all pain meds because he's concerned about dependency and addiction. I understand. But my dilema is no meds and I am confined to my home because I have trouble walking which only aggravates the pain or do I take the meds and at least have a semblance of a life. Because of this disease I haven't been able to work for awhile and it really sucks! I want to live as normal as I can.

I guess my questions are 1. has anyone had good experiences with the interstim? Even with the low chances of success? 2. what are your views on pain management? 3. has anyone had success with another option?

I'm real sorry this is so long and I thank everyone in advance for getting back to me. This is really getting critical.

[Dr Smitha Mathews]

Hi,

"The neuromodulation device by Medtronic, Inc., called InterStim® Therapy for Urinary Control, is now being considered as a potential IC treatment when other more conservative therapies have failed. InterStim® is FDAapproved for urinary urge incontinence, nonobstructive urinary retention, and significant symptoms of urgency-frequency in patients who have failed to respond to, or could not tolerate, more conservative treatments. It is important to remember that InterStim® is an experimental IC treatment that should only be considered after other standard IC therapies have failed. InterStim® consists of a small, surgically implanted device that is used to send mild electrical pulses to nerves located in the lower back (just above the tailbone). These nerves, called sacral nerves, influence the bladder and surrounding muscles that manage urinary function. This electrical stimulation (also called neuromodulation) may eliminate or reduce bladder control problems in some IC patients. The InterStim® system is surgically placed under the skin, typically in the lower back. To ensure optimal results, a test stimulation procedure is always performed prior to the implantation of the permanent InterStim® system. Only patients who respond positively to the test stimulator are considered for the permanent InterStim® implant.

Patients and physicians can obtain InterStim® informational packets by calling 1 [phone] ext. 3000. [CHECK NUMBERS!]

Also, information about InterStim®, including a listing of urologists and urogynecologists who have been trained by Medtronic to use the InterStim® system is available at www.interstim.com.

For specific InterStim® therapy related questions, call the Medtronic Patient Services Department at 1 [phone]. If you would like a contact list of other IC patients who have tried InterStim® Therapy, please call the ICA at 1-800-Help-ICA."
www.ichelp.org/Default.aspx?tabid=233

Do keep us posted on your doubts and progress
regards

[mick339]

i have ic too maybe 10 yrs. now i'm elmiron having a flare up now they put me on hydroxyz hope it will help i had blood in my urine this time. good luck to you