Helpful Hints For Home Instillations

[Pillowfight]

Re: Helpful Hints For Home Instillations

Thanks, that is very helpful...I will try your method! How long do you give it a shake? Also, do you do the instillation sitting up or lying down?

[pdxmom]

Re: Helpful Hints For Home Instillations

Thanks, that is very helpful...I will try your method! How long do you give it a shake? Also, do you do the instillation sitting up or lying down?

I shake the mixture for a minute or so. I sit on a low step-stool to do instillations with a mirror under me and good light so I can see. It was very hard for me to find my urethra before I figured out this method. I take the step-stool (which folds up) with me when I travel. Makes a big difference!

[Pillowfight]

Re: Helpful Hints For Home Instillations

Awesome. How often do you do it?

[pdxmom]

Re: Helpful Hints For Home Instillations

Every day! And if I have a flare that is making it hard for me to sleep, I will do another instillation of lidocaine only. Going on 5 years now.

[Pillowfight]

Re: Helpful Hints For Home Instillations

Oh geez! And it's never gotten better?! Thanks again for the tips. Is there anything else you think I should ask doctor today for doing home installations...? Some people have mentioned heparin. I don't have burning symptoms, just ur

[pdxmom]

Re: Helpful Hints For Home Instillations

Oh geez! And it's never gotten better?! Thanks again for the tips. Is there anything else you think I should ask doctor today for doing home installations...? Some people have mentioned heparin. I don't have burning symptoms, just ur

Well, it's better in that I'm not in constant, uncontrolled pain anymore. I am able to be almost completely pain free with daily instillations, amitriptyline, and a severely restricted diet. I think my condition is worse than most people's, though. I haven't encountered anyone on these forums who has to restrict their diet as much as I do.

I've had the best luck with topical lidocaine and elmiron. I think heparin is similar to Elmiron in function and may be a lot cheaper. It might be worth trying depending on what your doctor recommends. I very much recommend getting a prescription for lidocaine jelly to put on your urethra before and after doing the instillation. That helps a lot if you find the catheter irritates your urethra. Also, if you find your urethra hurts after instillations, you might try pediatric catheters. They are smaller—that's what I use. (LoFric)

Good luck to you. I know it's overwhelming at first, but if instillations give you good relief it's worth it and you'll become a pro in no time.