Anyone do Instills with Elmiron?

[SLP53ICIB]

I can't take Elmiron anymore (it helped) bec. of it causing colon problems. My uro says I would probably work good as an instill. Any suggestions? I did not respond well to earlier rescue instills with heparin, lid.,sod. bicar. I've been using cystoprotek but still getting flares if any diet missteps, especially with dyes like in meds. I can't imagine self catherizing. I'm not a nurse. But I'm getting tried of this. Diagnosed about 2 yrs. ago. Thanks for any help.
Susan

[gigisgirl]

I get Elmiron instilled now. I don't know that it is helping that much but I don't know what else to do either. My uro/gyno said she has done everything she can and will continue to do the instills but has referred me to a pain clinic.

[bunnykinb]

I had Elmiron instills every 2 weeks for 6 times. Unfortunately, it didn't help at all for me. I have tried monthly heparin, bi monthly Elmiron instills, and weekly DMSO. I am going to learn how to do heparin instills at home to see if more frequent instills help better. I am at an almost end too. The uro asked if I have been to a pain clinic which I haven't. I also haven't been checked for PFD.

[Kathy in Canada]

Hi,

I do weekly and up to daily if flaring instills with Elmiron.

I put 20 ml of sterile water for irrigation in a sterile urine specimen container, open up two Elmiron capsules (one at a time) and add the contents of the capsules to the sterile water. I swish it around and then add 12 ml of 2% Lidocaine injectable and 6 ml of 8.4% sodium bicarbonate injectable (separate new 10 ml syringes & 14 guage needles for both of these drugs). I swish this around and draw it up into a 60 ml BD syringe with a catheter tip making sure all the Elmiron is drawn up, as it settles to the bottom. I pull the syringe back to about the 10 ml mark to add a little bit of air so it clears the mixture out of the catheter when I instill it. I put this mixture into my bladder by way of a catheter myself. You can click on my name to see the whole process of how I do it in earlier posts. It works well for me. I leave it in at least an hour.

Kathy

[bunnykinb]

Are the catheters used rubber? How would I know what size to use?

[kdw]

I did Elmiron instillations last year for a flare. We did six instillations, each a week apart. The solution used was thicker than a DMSO instillation. I had to lay on each side, front and back for ~7 minutes to "coat" the bladder, then try to void. Because the solution was thicker, I was told it might be difficult to get started going. I found this to be true. I was told to drink water after the instillation to help "thin out" the urine. I was also told not to push/strain to urinate. It didn't matter if I had it in there for longer than 30-45 minutes. I found that I could easily void at about 1.5-2 hours post-instillation. I was one of only a few patients at my doctor's office that had received them at that time, so the staff was learning along with me.

The instillations seemed to help me get over the flare. Usually, I have to have a cysto/hydrodistention/chlorpactin treatment to get over that bad of a flare. Fortunately, the Elmiron treatments were without anesthesia and had very minor side effects. I experienced dizziness while the Elmiron was inside my bladder. It receded shortly after voiding all of it. I think I was the only patient at my doctor's office to experience that side effect.
Hope this helps!