WOW! Had my first bladder cocktail!

[mlch]

I had my first bladder cocktail and wow!:woohoo: I finally felt what it feels like to not have IC. Bad news it only lasted about 2hours.
I was so depressed afterwards, as I forgot what it felt like to be normal. No IC feeling was amazing.:woohoo:
I want another one right now!

The RN who does it spoke to me for over hour before doing it. She is so wonderful to talk to. She is completely following the directions of Dr. Parsons in San Deigo, She said he was a top guru. I'm going to do some searches here to find out more about him. For know I'm sticking with my ob-gyn who sends me to this RN at the urodynamics department at the Woman's Hospital. I should of never went to that horrible Uro who degrated me. With having this rn treat me is it like being treated by this Dr. Parsons guy.

She suggested according to Dr. Parsons to get the cocktail 3 times a week till to get IC under control. She has had some patients follow that and after a few months were pain free for quite some time.

The bad thing is INSURANCE. The cocktail cost is $177 a pop. As slow as insurnace is I won't know for at least 45 days if they will cover it. I so want to go back in Monday for another cocktail and follow this treatment schedule. But gosh if insurnace doesn't cover it, I can't be out over $500 a week!

Thanks for letting me vent about insurance and to share my joy of being pain free even if it was so short lived.

[kadi]

If you're having these done 3x a week, it makes more sense to learn to do them yourself at home. It's much less expensive & much more convenient to be able to do them at home in the evening before bed. I find that being able to do them myself at home gives me a greater sense of control over the IC. If I wake up in a flare, I can also do one & most of the time be able to go to work, no problem!

It's great that you had good results on your first try! I do the heparin, marcaine, sodium bicarbonate instillations at home. Over time, the positive benefit seems to last longer. Initially, I'd get a few hours of relief, now I feel good for several days at a time.

Hoping you get equally good results!

[kadi]

PS. The medicines & equipment cost a lot less if you can order them a month or two at a time from a pharmacy approved by your insurance company. I order my refills by phone & the pharmacy fed-exes them to me, usually in about 2 days.

[mlch]

Hi Kadi,
So glad to hear that over time the effect lasts longer. That is something i was wondering about. I kinda thought it would since the one ingredient did something to coat the bladder. I had read about Icers doing them at home. Just not sure if that is for me. The cost sounds much better but not sure I could do it right. Do you have to mix it together yourself? How hard is it to get used to using the cath?

[jen74]

Hi Laura.
My urogye just gave me the stuff to do my instills at home. I am nervous as hell. I have never cathed myself. My hubby has cathed me before though. When I was seeing my old urogyne, she was doing instills and every time she did it, I had retention and could not pee. She was using heperin,marcaine,biocarb, and kenalog. WHen I could not pee the stuff out, the nurse just handed my hubby some catheters and said to cath if I had to.
So my hubby does it, and actually does a good job
I have to learn how to do it though. I am nervous though as I do have some pain when the cath goes in (ouch!)
Right now, this urogyne I see is only using heperin,lidociane, and saline. I was able to pee this out, not sure what caused the retention in the one instill the other doc used. The instill my new doc is using made me have more pain though. I am suppose to them once a week.
I am glad you got some relief. Hope they continue to help you.
Jen

[waterflow]

:woohoo: That is so great!! Wonderful feeling huh? Glad you got 2 hours of relief. That is a start in the right direction. :woohoo:

[sheilacoito]

Maybe ask about the cost of buying the drugs yourself and asking the RN to teach you to self cath. I pay like 400 for three months. Also, check into costco to fill the meds, as i have heard that they are so cheap. good luck. wishing you lots of relief!!!!!!!!

[sheilacoito]

also, guys, ask your docs about marcaine if you are using lidocaine- it tends to sting less at first, and it is built to last longer, and it usually does!

[JlGirl76]

Wow

Wow, I wish I had a bladder intillation treatement right now. I am been doing fine with no symptoms for months. Other than the flu for a few days in December. However, tonight, I feel like I could pee every two seconds. I have heating pad on my pelvic, and I have taken the Deterol and a Pyridium tablet to calm it down. I was bad today, I had a draft beer with a friend, and I have been under a TON of stress this week so now I am learning what causes these flare up's fo rme.

Does anyone know if you can go to the ER ( It's Sunday) and have them do a bladder rescue instillation. I have the Dr. Parson's formula in my purse.


Any thoughts?

Thanks, Jen

[Sarojini]

Okay, first of all, to JlGirl76, the ER usually will not do an instill, because those doctors are not trained to do them... even if you have your recipe in your purse. Of course, sometimes there are great ERs who will call your uro and then attempt the instill, but usually, the answer is NO.

As for how hard it is to do an instill at home, the first few times it may seem like it's impossible, but you will do it quickly and find that it is not hard. You will also likely find that catheter insertion/removal is much easier to take if you do it yourself. You have an innate understanding of how you are shaped down there, and will naturally follow the shape of your urethra, using the right pressure for you, so that the process will be nearly painless! This is another good reason to learn to do these at home.

I do them at home myself -- yes, often you need to mix the solution, but some compounding pharmacies will do it for you for a nominal charge. I just felt, being a research scientist in a lab, mixing would be no problem... and it really isn't. It involves taking four bottles, opening them, and pouring them in a sterile manner into a clean container. That's all

The good thing about mixing yourself is that in this case, you can store your ingredients at room temp; if they're mixed already you MUST refrigerate the mixture, and then let it warm briefly before doing the instill.

And yes, Kadi is right, I know my instill effects last much longer now that I've been doing them for a while

[Sarojini]

PS... Dr. Parsons is a really nice guy. I talked to him on the phone twice... he offered me a job in his lab a while ago after we talked about his instill recipes and I discussed my science background and interest in IC. I really wanted to go, but we couldn't afford the cross country move to San Diego at the time. But he's an excellent doc... and his instill program really does help

[ICNDonna]

I don't have anything to add other than to say that self cathing is much less painful --- and actually not difficult to learn.

Sending encouraging hugs,
Donna

[JlGirl76]

Wow

Jen,

Thanks for the heads up on the rescue instillations! I thought the ER could help a person out, but maybe not. I didn't sleep at all last night, but I am feeling so much better right now. It's been about 6 hours....so, I made it through. I have been doing so great with no pain or flare/up's for months!! The next time I see my URO, I may discuss doing self cath treatments. It just sounds so strange to be doing that to yourself, but almost everyone on the message boards says it can be done and it's not that bad. I guess when you look at the pain a IC flare can cause or to self cath and feel better....yeah, self cathing, may not be that bad at all!!

Thanks again for your advice!!

Jen

[ihurttoo]

Mlch- :woohoo: I am so glad that the instills are helping you! I agree with the others....the home instills are awesome! I do them too. I like it because I can do it whenever I need to, even if it is on a weekend, holiday, the middle of the night or whatever and I am hurting. My instills are about $3 each (that is out of pocket since ins wouldnt cover mine.) But, they are well worth it! I also mix my own. I get my supplies from a "Mom and Pop" type pharmacy. Mine isnt a compound pharmacy, but I know that alot of ICers have to get theirs from one that is.

Jen (JLGirl76)- I agree with Sarojeni, most ER's in my area wont do instills either. Before I started doing mine at home, I had to get my Dr. to leave standing orders for me at the Fast Track part of the ER so that they would do them when I was hurting bad and flaring. But, even then, the nurses had never heard of Instills before....(or usually even IC!) But, before I had my Dr. do that, whenever I'd go b/c I was in severe pain, they'd want to give me an antiinflammatory shot, (or occasionlly a decent pain shot...if I was lucky!), then, they'd try to throw an antibiotic at me (about 1/2 the time) and send me on my way. It took me 4 yrs to get my Dr. to let me do the home instills, but most havent had that problem. Most Drs. will let patients do them at home once they see that they are helped so much by them.

I hope your flare ends soon!

I agree with Donna, Kadi, Sarojini and the others....it is much more comfortable for most to self-cath than to have someone else do it. It was very easy to learn.

Mlch, I hope that you get better and better with each instill! I am so thrilled that they gave you so much relief!!

Hugs to all,
Amy

[kadi]

Yep, much easier & more comfortable to catheterize myself than have someone else do it. One thing that helped me also is that when I first started, the resident (I go to a research hospital to see my IC specialist) gave me a handful of catheters to try out (latex, nonlatex, different sizes from pediatric 8Fr to small adult 12Fr). Then when I knew what catheter was most comfortable for me, they wrote the prescription.

I mix my medicines at home. Very easy. I use a urine specimen cup to put the sterile water in and a 30cc syringe to draw the medicines out of their bottles, then to put them into the cup. Next, a 60cc syringe to draw the medicine out of the cup for the instillation. When I'm done with the instillation, I rinse the cup & syringes with hot water, dry with paper towel & store them in an open brown paper bag in a drawer tub under my bathroom sink.

My instillations also cost about $3-4 each time. I use the syringes for 3-4 treatments, then discard. Most people wash out the catheters & reuse. I however, use a fresh one each time just to be extra-careful. Since I am allergic to all oral antibiotics except one, it's a pretty nervewracking experience to get a UTI. If Macrobid doesn't work on the UTI, I'll have to be admitted to hospital for IV antibiotics. So far, this hasn't happened, but my doctors have let me know it's possible.

That said, I've only had two UTI's in the 21 months I've been doing these treatments. And one happened the night after the one time I had internal pelvic floor physical therapy evaluation. Since the ER doc said it's possible that caused it, I refused further internal PT. The other one happened after I did an instillation the same day I'd had diarrhea. I'd thought I'd been super careful about cleaning up from it, but I still got e coli infection. So now, if I have my period or the runs, I don't do instills those days.

These rescue instillations have been a total lifesaver for me. I am pain free a lot of the time. They've lowered the intensity of flares & have saved me many days I'd have lost work before.

Hoping it works out well for you too!