rescue instills will not stay in bladder???

[sully02]

I was just diagnosed, after months of tests, for IC last month. I have had 3 rescue intstills and the first one stayed in until I got home. But, the last 2 have come out as soon as I stood up. Today, I stayed at the DR and did not move for 30 minutes but as soon as I stood up, out it came. I had to run through the Drs office in my socks and pants half pulled up to get to the bathroom. Does anyone have this problem? If so any suggestions?

I think they are working great. No pain either. She gave me a sample of enable to use next time to see if that helps it stay put.

I love this board. Everyday I learn something new, even reading the same posts help me understand better each day.

sandy

[leelee88]

Sandy, the first one I had I had trouble holding it. My URO said it was because my pelvic floor was weak.. Have you been tested for PFD? I would talk to your Dr about this..

[sully02]

Rhonda,

Thanks for responding. I did ask that question. But, have not been tested yet. She wants to see how the instills work for me and then she said she would look into pfd. It might be sooner rather than later, I have another one tomorrow and we will see if the drug works to keep it in place. She did tell me we have a woman locally that has done her Doctoral theises in IC and she does wonders with people. So she will more than likely be on my list of Drs to see.

I can't find spell check here, sorry for the spelling mistakes.

sandy

[HGC]

Are you losing control when you stand up or does the medicine just come pouring out of you? If it just comes pouring out of you it is possible that the Dr. is instilling the medication into your vagina and not your bladder. This happened to me once.

[ICNDonna]

If there is lidocaine or marcaine in the solution, that can numb the bladder so you don't feel the need before you urinate. That happened to me when I was having steroid instillations. I asked them to reduce the lidocaine and that worked.

Donna

[sully02]

When I lay back on the table, it does not come out. It is when I first stand up, it all just comes out. It does not smell like urine, nor does it feel like I am peeing, but then it is numb from the lidocaine. Today, I feel kind of raw in the urethra and thought it mind be because of the cath? I will ask about the lidocaine. I have another instill tomorrow. And will take a huge pad along with me, maybe three.

thanks again to everyone.

sandy

[icgennifer]

I was just diagnosed, after months of tests, for IC last month. I have had 3 rescue intstills and the first one stayed in until I got home. But, the last 2 have come out as soon as I stood up. Today, I stayed at the DR and did not move for 30 minutes but as soon as I stood up, out it came. I had to run through the Drs office in my socks and pants half pulled up to get to the bathroom. Does anyone have this problem? If so any suggestions?

I think they are working great. No pain either. She gave me a sample of enable to use next time to see if that helps it stay put.

I love this board. Everyday I learn something new, even reading the same posts help me understand better each day.

sandy

Hi Sandy,

I was recently diagnosed with IC. I had my first instillation today and I felt like the liquid was starting to come out of me. The nurse said that what I felt was the lidocaine jelly they used to numb my urethra before the catheter went in. The nurse also said that I shouldn't have to hold the mixture in me.. the only time I should try to hold it was when I felt the need to urinate. She also said that the liquid wouldn't just ooze out of me because it was injected directly into my bladder.

I hope you feel better soon!

[sully02]

I could feel it when the cath went in so I think it was in my bladder. But, it pours out, even past the pad. I have another one today so we will see if the drug she gave me makes a difference. She thought my bladder was just so inflammed and sore that it is just reacting by pushing the fluid out. I swear sometimes these kind of things can really get you down.

You sound like you have been recently diagnosed like me. How are you doing?

sandy

[icgennifer]

I could feel it when the cath went in so I think it was in my bladder. But, it pours out, even past the pad. I have another one today so we will see if the drug she gave me makes a difference. She thought my bladder was just so inflammed and sore that it is just reacting by pushing the fluid out. I swear sometimes these kind of things can really get you down.

You sound like you have been recently diagnosed like me. How are you doing?

sandy

Hi Sandy,

I was just diagnosed on 11/6, but I have felt like I have had the symptoms of IC for a few years. I think I'm doing ok. My symptoms are more pain and pressure rather than urgency/frequency. I just started the bladder instills ( mine is an anesthetic cocktail). My first 2 pees afterwards were virtually pain free but now it feels like my bladder is mad at me. The nurses said it might take 3-4 instills until I feel relief. My urologist was great for a diagnosis, but doesn't seem to be aware of treatment options for IC patients. I'm going to see a doctor who lists IC as one of his interests on 12-4.

[sully02]

We sound like we are in the same place. I was diagnosed about 3 weeks ago. But, it has been since April that I have been trying to find out what is causing the pain and pressure. Those are my main symptoms too. Plus fatigue off and on. I get the freguency when I am really hurting, I have just found out that happens when you eat something that your bladder does not like. I have found this web site wonderful and am glad you found it too. I have been reading books also. I am really just starting to get a handle on my diet. If you pull up ortho McNeil Elmiron site you will find a daily journal that you can copy and keep a track of how much you pee, what you eat, your pain level, etc.

Where do you live? We have a wonderful support group here in St. Joseph Mi where I live.
Sandy

[icgennifer]

We sound like we are in the same place. I was diagnosed about 3 weeks ago. But, it has been since April that I have been trying to find out what is causing the pain and pressure. Those are my main symptoms too. Plus fatigue off and on. I get the freguency when I am really hurting, I have just found out that happens when you eat something that your bladder does not like. I have found this web site wonderful and am glad you found it too. I have been reading books also. I am really just starting to get a handle on my diet. If you pull up ortho McNeil Elmiron site you will find a daily journal that you can copy and keep a track of how much you pee, what you eat, your pain level, etc.

Where do you live? We have a wonderful support group here in St. Joseph Mi where I live.
Sandy

Wow! The same symptoms as me! Most people on here seem to have more of a frequency/urgeny problem. I do get fatigue too.. but that seems to only happen when I have been in pain for days. What books do you have? I am going to start a strict IC diet this weekend. What medications are you taking? I live in Princeton, NJ.. I think there is a support group that meets every so often out here.. I just need to get in touch with them.

Let me know if you'd like to e-mail. I'd rather not post my email on this site, but I'd be more than happy to send you a private message so you can have it.

[sully02]

Absolutely I would love to stay in touch. Our group support leader just called and I talked her ear off. Asking questions etc. I ordered from the ICN shop the books, Confident Choices by Julie Beyer, she has IC and her book helps you figure out what your personal trigger foods are and what foods to eat when you are in a flare. Of couse, I feel like I have been in a constant flare for months. She has a new one coming out that is supposed to be even better with more receipes. The other one I got wasThe IC Survival Guide by Dr Robert Moldwin who is an expert on IC. A tip I got from the web site is to have a water bottle to rinse off with after you pee. It feels so good. There are peri bottles but I could not find one so I just use a water bottle that has a squirt top.

Yes, send a private message. Sandy