Please help-Have questions

[Myca]

Okay, so I have a few questions and I need you all's advice. I went to see a new doctor that was highly recommended in the Atlanta magazine, he is a UroGynocologist. He suggested, unlike my last doc, that I get off most of the pills I am on (hydroxizine to sleep, Detrol LA, Urelief which is like Pyridium, and of course, Elmiron). He wanted me to stop taking the Urelief, which is the only thing that gives me relief, and the hydroxizine which wasn't doing anything anyway, and up my Elmiron to 400 mg, which is basically 2 pills twice a day. And then he suggested getting a full course of Heparin instills. I did that for about 4 treatments and things did not get better or stay the same but got worse instead, to the point where I was peeing every 15 min but only at night, and at every commercial when watching TV in the evenings. So I stopped getting the instills and set up a hydrodistension with anotehr doc who is very good for Friday 3/18. But now I'm scared, I had it once befor ein 1999 when I was diagnosed and I do remember it helping but I am being a weenie and freaking out. Do you guys think it will help or make things worse?

[kelly McC]

I do get some relief fom having this procedure done. I have had 3 since last March. but we are all different .How long have you been on Elmiron? Have you tried the diet? I am sorry the heparin instills did not help I do them at home I had to do a few serious before getting relief but we are all different.
Hope you find a treatment that helps you,
Kelly

[Mom of Twins]

I live in the suburbs of Atlanta, too. I have seen the ads you are referring to in the Atlanta magazine. I had always wondered about that practice. Please email me and I will let you know which urologist I have been seeing in the Atlanta area. I wish you much luck. :grouphug: My email is andreapace@aol.com.

[Katrina]

Some do get relief from them. I am so sorry Heparin made things worse. I personally do think it is important to do some kind of treatment that helps to re make the lining of the bladder....other than that you need to do what is best for you. We are all different and your experience with different treatments is the best way to know what is best for you. I sincerely hope this hydro goes even better than your first!

[ICNDonna]

If your first hydrodistention helped, it might help again. I am one who is helped substantially by this procedure. It's a decision you have to make for yourself, however.

Warm encouraging hugs,
Donna

[cnitzken]

Kelli, what is a heparin instill?
cyndi

[Babs RN]

Cyndi,
Heparin instills are thought to build back up the GAG layer, or the mucous layer that we are all lacking. As far as the hydro, I get about six months of relief from mine, when they actually do one...still waiting to get one scheduled.

Hugs,
Barb :grouphug:

[cnitzken]

Where is the heparin given?

[kelly McC]

During a bladder instillation, the bladder is filled with a therapeutic solution that flows in through a narrow tube inserted through the urethra and into the bladder, called a cHeparin is chemically similar to constituents of the GAG layer. It is believed to have anti-inflammatory and "surface protective" action when instilled into the bladder. So, like the oral medication ELMIRON®, it has been used to help "recoat" the bladder.
Heparin is instilled in the bladder via catheter in a manner similar to DMSO. While it is usually done in a doctor's office at first, most patients find they can easily learn to self-catheterize for home treatment. Research by Parsons (5) shows that heparin, when administered three times per week for three months resulted in clinical remission of symptoms in 56% of patients and the remission was maintained in 80%-90% for up to one year, if treatment was continued at a maintenance level.

It is common for DMSO and heparin to be instilled in the bladder together. Heparin instillations are also often used in a treatment program that includes oral ELMIRON®.
atheter. The instillation is held for varying periods of time, from a few seconds to 15 minutes or more (known as "dwell time"), before being drained or voided. Although most physicians use the "adult" size catheters, if patients have discomfort or difficulty with it, they can request the use of a smaller "pediatric" catheter.
The purpose of the instillation varies, depending on what is instilled. Some solutions are thought to coat and protect the bladder, while others are thought to suppress inflammation. Many physicians instill combinations of ingredients that they believe work better than a single agent. Patients sometimes refer to these as "cocktails."

IC patients may want to ask their doctor to describe all of the ingredients in the instilled solution, and what each is for. This knowledge is important because many IC patients have drug allergies and sensitivities. Should you have a reaction to one of the components, your doctor can adjust the combination to suit your particular needs.

[cnitzken]

WELL, there ya go!!!!!
I just copied and pasted your reply and am sending it to my doc tomorrow a.m.
This may just be the ticket.
cyndi

[keri]

So here's how I see it: the bladder wall is inflammed because the urine is leaking thru the mucous layer b/c it's damaged. So why or how did it get damaged? Check out the Yeast Connection book, could this be the reason?

[born2swim]

Well I had one done 6 months ago and it helped a bit, so I just got another one last week. It took 2 weeks for the other one to help, so I am hoping this one does too. Don't be afraid. Just make sure your doctor isn't TOO aggressive.

[mary124]

The hydro's help me--last around 6 months before I start thinking about another one. Usually within a week I feel better. Good luck in whatever treatment you decide on.

[lisabar36]

My first hydro helped me alot! I had relief for a long time. My second one helped also, but I had alot more frequency right after having it done then I did the first one. But they both helped. I hope if you decide to have it done, it helps you also. :) Lisa

[snowgirl]

I have gotten hydros every 6 months since my IC started progressing. My capacity was down to 100cc or so when I started per my request every 6 months with DMSO. These treatments are what kept me able to work fulltime for 22 years that and continous birth control pill of 16 years. Oh I must not forget also my my wonderful gyn and wonderful uro at U of Michigan Ann Arbor. Vicky For the last 8 years this is my hydro schedule. I am already booked for May hydro.

[judy45]

My uro wants to do this. I am nervous about making the appointment, what can I expect as far as recovery, more pain etc... trying to figure out if I should miss work. How soon after this did you feel relief. At this point (with ic diet and vistaril not working) I am willing to try anything, just wanted the dirt from someone who went through it. Thanks

[RWadeJ]

Judy
I'm having a hydro done March 11. I've been treated for IC for 3 years now, but have never actually had a hydro before. (I did have an in-office cysto done though). Anyway, I'm hoping it provides some relief, but at this point I would really like some answers as to just how bad or progressive my IC is. I think that will be very helpful.

Janice