Learned to cath self ...

[jackiew75]

:cussing: This is just plain wrong! Anyone have any good success with the elmiron instills?

I feel worse now than I did yesterday.... They tell me this is normal. I dont want to do this every other day for the next two weeks if this is how I am going to feel... I dread the thought of putting that cath back into my urethra that now feels AWFUL (worse than before... I thought it was bad then)!

Open to suggestions.... any and all....

[L. Thomas]

I have been doing home instillations since 2004. In my signature there is a link to helpful hints for home instillations. I don't know if the information will help you but I hope it does.

I know that self-cathing is very painful for a lot of ICers. I have read that elmiron itself has caused some people problems.

Remember self-cathing is just one treatment. You can say "No" to any treatment. If instilling is not working for you, FOR ANY REASON, don't hesitate to tell your MD that you don't want to do it.

[SandyRN]

Do you add lidocaine to the Elmiron solution? If not, you might call your doctor and ask him for a seperate RX for either lidocaine or marcaine. Also, they make lidocaine injector gel that lots of people use to numb the urethra before doing an instill.

Hope this helps.

Sandy

[soccermom32]

I go to the office for rescue instills with Elmiron. They numb my urethra first, then the solution goes in and there is no problems. I swear these instills are what made me get better despite all the other stuff I take.

Maybe you could go to the office to have these done so you don't have to cath yourself? My office wanted me to learn to do it myself and I just said, "no thanks, I have no problem driving here to do it!"

Give your urethra a break for a few days. Its normal that its irritated. Try MSM with 100% aloe vera gel mixed together and apply to your sore urethra.

(((HUGS)))

[Taramc]

Of the 15 self-catheters I've done so far... (okay actually I'll call them "husband catheters", since he's better at finding where they go than *I* am!)... FIVE of them caused me some serious urgency and urethral troubles. I'd get like the urethral pain/spasms for 2-7 days afterwards.

We have NO idea where we went wrong with the ones that caused trouble. They were just more painful coming out. I started wondering if it has to do with the angle, or where the holes on the catheter might be passing by a sore spot, etc. We used plenty of surgical lube, I always took a Bactrim first, I always boiled the cath if I was re-using it, etc.

Anyway the 2 instills I got from my urologist's nurse did NOT cause that kind of trouble, though I did have serious urgency on the day OF.

As for now, I've quit the instills to give my urethra a break. They only had Marcaine/Heparin in them, anyway. Sounds like you guys are getting some fancier stuff! I'm not yet diagnosed..that's probably why. No fairzees :)

[ICNDonna]

You might check out the Lo-Fric catheters to see if they are less problem for you. I do think it would be a good idea to talk with your doctor before you do your next instillation.

Warm hugs,
Donna

[jackiew75]

They did give me lidocaine to put on the opening and then again on the cath... It was still very painful to have this put in. I have never had one done before so I did not know what to expect.

I have to mix a solution of sodium bicarbonate, lidocaine and elmiron together then flush the cath with saline.

I have to say, when I went to the bathroom this morning, I was fully expecting it to burn like it always has, and it didnt. I dont remember the last time I went to the bathroom and it did not burn. I can tell that I am still retaining urine though and I am not sure if this procedure will help with that. Yesterday when they did the cath, after I had voided, they still got out 120 cc's. Although I have found some relief, I am still not all that crazy about cathing myself.

As far as going to the dr office.. thats out of the question. I actually have been seeing a Uro 60 miles (one way) north of me because the one 5 miles away was going to make me wait 7 weeks until they could get me in. Maybe I will have my care transferred down where I live.

[mom_in_ma]

Just wanted to wish you good luck with this treatment. I'm talking to my doctor about starting the heparin intills today and I'm scared to death!

Here's to hoping we both feel better soon.