Helpful Hints For Home Instillations

[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.

[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

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

Awesome. How often do you do it?

[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

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

Hi there,
I also mix my medicine in a sterile specimen cup (you can order them on Amazon). I use 4 Elmiron capsules and 10 ccs of topical lidocaine. (I tolerate it much better than the injectable lidocaine.) One of the benefits of this method is that you can screw the specimen cup's cap on tight and vigorously shake to mix the Elmiron and lidocaine. This avoids clumping. I then just remove the end of the 20 cc syringe, pour the solution into it (no drawing up). I use a clean finger to stop the solution from pouring through the end of the syringe. Then I put the stopper back in the syringe. I inject into a low fric pediatric catheter with no clogging issues. Hope that gives you some ideas.

[Pillowfight]

Re: Helpful Hints For Home Instillations

The only result I'm getting is Elmiron stopping up the whole works in the catheter and liquid splattering everywhere. Have LoFric catheters, 60cc syringe. Suggestions?

[Taramc]

Re: Helpful Hints For Home Instillations

I used to empty two Elmiron capsules into the specimen cup with the liquids and stir. Then I'd pull it in to the 35ml cath tip syringe until it was full. There was always a little leftover because my instill liquids total to 40 ml.

I had a few catheters get stopped up with the Elmiron powder, and I can attest to it getting on everything if you boil and re-use supplies like I do.

But this does work, and I recommend staying with the instills if you can. They are the only way I can get to sleep when I'm flaring.

[L. Thomas]

Re: Helpful Hints For Home Instillations

Yes, so do have increase in pain. Instills help about 80%. Some have found they are sensitive to one or more of the ingredients. I have read that some are very sensitive to preservatives in some of the meds. It seems the greatest offender is lidocaine. Those who have switched to Marcaine seem to have better results. I have no clue what the difference is in the 2 meds. Several have found it doesn't seem to help at first but over a few weeks it does. Others who have no improvement stop instill altogether and try them again after a few months and find they are helpful. Talk with your MD and see what he/she thinks might be good to try. I know that I have a tough time with IC during seasonal allergy season (I am allergic to tree mold). April-May and Sept-Oct are the worst for me. I go from needing an instill every month or so to almost daily during allergy season.

[dianabritt]

Re: Helpful Hints For Home Instillations

Ive been doing instills at home for a month now and its seems my IC has gotten worse. Has anyone else experienced this from instills?

[L. Thomas]

Re: WELCOME, Suzy

Also..you may see a small amount of "residue" in the syringe. From what I have been told that is "filler" to keep the Elmiron suspended in the capsule. Don't worry, the capsule contents that contain the Elmiron are dissolved in other meds. in the syringe.

I am so glad my instructions have helped. I read so many post about no information on how to do the procedure I thought explaining the way I was taught might help.

[curlycue]

Re: WELCOME, Suzy

I would do just that empty the Elmiron capsule into the syringe first and draw out the liquid next for me it's easier that way good luck !!!

[QueenMellyBee]

Re: WELCOME, Suzy

All you ladies are so awesome and nice - and Taramc, thanks for the picture. That is why I love this board; nowhere else will someone freely take a picture of their catheter and syringe to help others!! HAHAHA, it's wonderful!

The good news is that once I started manuevering the Lure-lock syringe to the end of my red-rubber catheter (and got rid of the needle hee hee), things have been going MUCH more smoothly! No more medication loss all over my towel.

My only current complaint is the amount of "concoction in the cup" I can't suck up into the syringe. (ie. When I put Elmiron broken capsule powder into cup, then add the amount of Bicarb & Lido I need - then stir it all up). I just always seem to leave a decent amount of silty residue behind

I am thinking of trying your method L. Thomas, and putting my Elmiron powder directly into the syringe first, and then sucking in the liquid. I hope that doesn't "pre-contaminate" my syringe by removing the plunger though...?

I'll give it a whirl - anyways - doing MUCH better at home instills, and thank you ladies for your support.

[L. Thomas]

Re: WELCOME, Suzy

I use the lure lock syringe with a pediatric feeding tube. The syringe attaches without problems to the feeding tube. I use a 30cc syringe and a 8"x15" feeding tube. Don't worry..it will work out. Everyone has problems at first.

The vials do hold a little that you do have to work at to get it all. I turn the vial upside down and put the needle as close as I can to the opening then turn the needle so I can see the little opening in the needle. Then pull back on the syringe. Don't worry about the air that gets in the syringe. You can push the air into the next vial.

Be sure to keep the syringe attached to the catheter until you remove the catheter from the urethra or the meds will drain out.

I am not sure what type of insurance you have but my insurance will cover the syringes and catheters if I buy them from a durable supply store. It is covered under major medical. It won't cover the cost if I have them filled at the pharmacy.Dr. Dell will allow me to use the catheter 4 times but I have to use a new needle and syringe each time. MD's give instructions that differ so much it isn't even funny..just ask your MD.

Perhaps you could schedule another office instill. You could take a mirror and look as the insert the catheter and ask questions..I did watch one instillation with a mirror and the nurse described in detail what she was doing. Then I did an instill while the nurse held the mirror..she was very helpful and made suggestions..she was very encouraging. She also said that I could come back as many times if I needed to get help.

When I did use the Elmiron I remove the plunger of the syringe and broke the capsule. I then "poured" the powder into the syringe. I reattached the plunger and turned the syringe upside down. I pushed most of the air in the syringe out then inserted the needle into the vial and pushed the remainder of the air into the vial. I shook it up and then did the instill as normal.

Don't be afraid to ask questions or pm anyone. We all had to start at "ground 0". It doesn't sound like you are having more problems than anyone else when we started.If you have any questions feel free to ask. If I don't have an answer I will find another member to help.

Using the mirror is the best advice I can give..you might want to review my original post. I have tried to explain what I did.
It takes a little time but I know you will be able to do it.