starting instillations monday, a few questions

[holles]

i'm starting instillations monday. 3 times a week for the next 3 weeks. the doc is putting heparin, lidocaine, and bicarbonate in the instillation.

my questions are

when will i start to show progress?

i'm supposed to hold the "cocktail" for 2 hours. i'm worried i might not be able to wait the whole 2 hours. would they have to do more if i can only hold it an hour or an hour and a half?

how long does the relief last?

is there any pain besides the catheter?

will i be able to go swimming a few hours after the instillations?

is it okay if i'm having my period during the instillation? i'm expected to start this weekend, and the first 3 days are always bad.

thanks in advance.

[Dixiefireball]

i use the heparin and marcaine cocktail. I do them at home and hold them as long as i can. most doctor says try to hold it for at least 20 Mins.
the way it started for me i was doing them three times a week at first for about a mth then a new study came out then i started doing them one to three times a day it took about a week and i started to feel better ALOT better. since my doctor agreed to let me new the new study i can do them up to three times a day at home but normally one will last me all day now at first it would last oh i would say about two hours, but we are on diff meds here.
and as far as swimming goes personally i have no problems with it.
I hope all things goes well for you.
sending you hugs and prayers
Rhonda

[Lyn40]

I don't have the answers to your questions, as I will be having my first instillation next week. I find it interesting though, that different doctors have different opinions on the time needed to hold the drugs in. I saw 2 local Uro's who both said to hold it for 2 hours. My Uro who specializes in IC at a large University Hospital said 20 minutes was adequate. Twenty to 30 minutes is what I have read in IC books.

For those of you who have done instillations, what are your thoughts on this?:hmm:

Lyn

[Kathi]

I was told that 20 minutes was enough with DMSO & to hold the Heparin cocktail for as long as I could. I found no problem holding it, it felt kind of soothing. Good luck, let us know.
:kiss: Kathi

[ICNDonna]

Kathi is right. It is DMSO that is held for 20 minutes, although I hold mine for about 45. When I had heparin, I held it for up to two hours.

Donna

[kelly McC]

I have found the heparin for me much easier to hold and I can hold it much longer than dmso. My doctor told me to hold as long as I could. I am doing installs twice a week for 8 weeks the office is 45 minutes away and I do just fine. Best wishes,
Kelly

[holles]

thank you so much for your replies. he did mention that if these don't work, he'd add dmso. but he wants to use that as a last resort.

i was feeling okay with all this until this afternoon when they called to remind me of my appt. :rolleyes: and i just got this sick feeling all of a sudden. i'm so worried it's going to hurt. esp since i have trouble urinating after being cathed.

also, the paper the nurse gave me said to pour 2 cups of bleach into the toilet and leave it there after i pee the first time. :confused: is that normal? just how bad is this stuff they're instilling? or is this for something else? the sheet she gave me said it was for bladder cancer which i do not have. will i have different instructions perhaps?

just freaking out until monday morning. :rolleyes:

thanks for your patience.

[peiti]

Holles,

It sounded like they are going to give you BCG treatment. Are you sure you are getting heparin, lidocaine, and bicarbonate?

I did try the above two different instillations. BCG is for bladder cancer, but it is also studied for IC recently. However, after getting weekly BCG instillation for 6-8 weeks, it didn't help me at all.

I started the heparin self-instillation 3 years ago. I often did that before going to bed hoping it helped me hold longer. I didn't have any problems with heparin. However, it doesn't work as well as it did in the beginning. I had about 3- month remission.

Good luck.

[ICNDonna]

I think I would ask the doctor specifically about the bleach in the toilet. That's usually for BCG, which is sometimes used for IC.

I hope your treatment goes well for you.

Warm encouraging hugs,
Donna