Instilling At Home

[Sarojini]

Hi all,

I know most people usually want to AVOID this, but I think I would PREFER to do my own instillations at home. I am totally frustrated with having to go to the doc's office all the time... it REALLY gets in the way of work, especially since after a DMSO it's usually a few hours before I have the urge to get back to normal activities. However, it seems I am going to need to do an instill of some kind fairly routinely, too, since if I quit doing them I can only go a few weeks before I become symptomatic again.

My ideal situation would be to have the DMSO and cath supplies at home, so I could do it in the evening after work myself when needed. Then, I could rest all night and be fine (aside from the stench) ;) the next a.m.

My husband has even said that he would be willing to learn how to cath me so he could help out. He knows how annoyed I am to have to keep going to the uro's (I love my uro, but it's just a pain!!!) and he wants to do whatever he can to help me.

He looked at my vulvar area, and I looked at it using a mirror, and we could easily identify my urethral opening... both of us think we could effectively master the cathing technique because we are both totally accepting of my genitalia and think that after a few practice tries we can do it. At work in the lab, I can get a needle into the tail vein of a mouse, so I'm thinking I can probably get a catheter into my bladder too.

Anyway... is it possible to get the DMSO stuff at most pharmacies? What about cathing supplies? AND, I guess first and foremost, does anyone recommend that I actually go for it and ask my uro if this is a viable option for me?? Do you think a uro would agree to this?? (I'm kinda afraid they'll say no... but that it would be more because they need to make a buck too ;) )

Thanks for any input anyone might have...

:)

[icnmgrjill]

It's actually quite common for patients to do instillations at home... BUT you have to be trained how to do it very carefully first... including how to maintain sterility. You do not want to get sloppy and give yourself an infection. Also, reusing catheters can be very risky as they can also harbor infection.

You have to learn how to use the proper catheters (ask for the LoFric catheters from AstraTech. They are the easiest and most comfortable to use).. but you have to learn how to work with the compounds that the doctor is asking you to use (i.e. proper dilutions etc.)

Here's a mistake that a patient in my local group made. She was using very long 18" catheters but found them wiggly. So, she unfortunately chose to cut them down in size. Well, you guessed it, she actually put it all the way into her bladder and lost it. Ten hours later, including spinal anesthesia, a doctor was able to remove it with forceps out of her bladder. Sooooo.... important to be informed and educated.

I have a number of friends who self cath very successfully!

Jill :)

[Sarojini]

Thanks so much for your reply, Jill! You are right... the LAST thing I need is an infection!!! :rolleyes:

I have an appointment at my urologist's office this coming Wednesday. I think I will bring this issue up with him then and see if he is amenable to teaching me everything I need to know (including sterility and info about proper catheters) to do this at home.

Gosh, I'm not sure I'd ever think to CUT a cath though... if anything I'd be afraid of the potentially sharp edges that would cause. That's horrible that the woman from your support group lost one in her bladder!!!!! It must have been really painful, and I hope it did no lasting damage!!!

Thanks again for your reply!

[Dianna M.]

Hi Sarojiny,
I have instilled DMSO and a few other medications. No one ever really trained me to do the catheterization part, I just got a number of catheters and practiced. For women if it doesn't hurt while being placed. it means you have put it in the vagina instead. You have to start again with a new catheter or an infection could likely start.
Of all the things to recommend to you the most important is for you to get the smallest catheter as you can find. The best is child size. They all do the same thing but the smaller size just make the procedure less painful and better for less pain following each pricedure. I live in Canada but I know all you have to do is to call a medical supply store. If you find one that sells medical devices even things like wheelchairs and stethoscopes will sell catheters or will be able to tell you where to go. Mine were great they put together a kit that I would use each time to be sure that I did use a sterile techinique. As Jill reported, for someone with IC an infection can be almost unbearable.
Please email me personally if you have any other quesitons.
Your IC friend
dianna

[Dixiefireball]

i do my own treatments at home. i was trained to them in the office by the rn.
I find it easier on me in many ways and really less painful. I don't know why but i have much less pain doing it myself or my husband doing it for me.
I really feel it has made my bladder much much better.:thumbsup:
I have to really be careful the way i clean them tho. i wash them in anti bat. soap then soak them in vinger and water then air dry.
talk to your doctor about this if you are finding them helpful when my doctor asked me to try them at home i thought he was crazy then that new study came out on the medicine i use to put it in my bladder daily well things did trun around then and my bladder got alot better but i still get those true nasty uti. no matter how clean and careful i am, but heck i got them before i started these treatments.
sending you hugs and prayers
Rhonda

[heybrej]

My very first trip to the uro after my diagnoses, he sat me down and talked to me about the disease, treatments, and all that jazz. He siad that he wanted to begin instillations of hepiron on a weekley basis and told me, on that first day, that there are some women who are determined enough to cath themselves and administer their treatment. There are sometimes when I want to do it on my own, but other times when I feel that i just am not capable of hurting myself like that (they get it oever with so quickley!) . I hope that you find your answer, and good luck!

You are lucky to have such a willing husband! What a great man! I'm not sure mine could do it ;)

_breanna_

[Sarojini]

Well, I'm going to the uro's for a DMSO this morning at 10:30 -- while there I'm going to ask if they've got anybody doing their own instills at home.

I just hope this instill helps my current flare right now. I don't have an infection (dropped off sample) so I guess I am just flaring... I think the instills helped that last time I had a series of 6, so will try again and see.

[Dixiefireball]

Let us know how you are.
Rhonda

[Sarojini]

Geeze, it was another terrible instill for me... I was flaring really badly to start with, and even though I felt like I had to pee SOOOO badly, I couldn't. So, the nurse had to get the urine out with a catheter AGAIN. Being cathed really hurt and made me yelp today, probably because I was already flaring.

Then, she just left me on the table with that stupid long cath hanging out and wiggling around while she went to go do the urinalysis...my urethra and bladder did NOT like that idea AT ALL. When she came back I was practically crying.

But at least, no sign of bacteria still...yay, no infection!! Just some white cells, and a tiny bit of blood, which is usual for me in a flare.

So the nurse did the instill... of course, that was very ouchie too. Then said I should come back for more each week again!! So I asked if I could do it at home, and she said they'd been having trouble with the insurances and the pharmacies around here (apparently it's been hard to get the meds and caths?? I dunno...she gave me NO details)-- so they only did that very rarely. She said to wait and see how I do...

ANYWAY, despite peeing broken glass right now, I took meds and am at work... I am hoping this will get me back to feeling better soon.... :)

Thanx for your concern :)

[Dixiefireball]

your welcome hon I find doing mine at home much easier and less painful I have had no trouble with inc paying for it matter of fact the heparin i only have to pay 3.00 for and that is over a hundred viles and the marcaine the inc pays for it all. The doctor office give me my caths.
sending you hugs and prayers
Rhonda