SCARED about instill tomorrow

[Rubes]

Hi - I am super confused about the instill I am supposed to have tomorrow. I asked my uro if there was anything he can do for the pain/urgency in my bladder, and he told me to call to come in for an instillation. The nurse FINALLY called me back, wasn't particularly sweet, and said "what? I don't do rescue instills - just theraputic. I only do rescue instills after the PST test." Once she looked thru my file, she saw where the dr. ordered the instill for my pain, and said she cold do it in the morning. She said she does a urojet, then instills heprin, marcaine, a steriod of some kind, and sodium bi-carb. I asked if I'd feel better right away and she said "maybe, maybe not." Yeah, she was a real gem.

Can someone tell me what to expect? I'm really scared (to the point of tears now), but am also sort of desperate to feel better. Is the relief temporary (and if so, how temporary)?

Thanks!!

[Lexie]

Hi Rubes --
I've had quite a few instillations and for me they're not painful and they do help. The catheter pinches a little as it goes in and then the PA drains the bladder and then pours in the solution. I use Elmiron, Sodium Bi-carb, and Lidocaine. It doesn't burn or hurt at all. I hold it in for a few hours and then empty it out. It took several instillations before I started to really feel better, though. I had one per week for several months. They really helped and now I feel good most of the time. I still get them every 2 weeks or so, just in case. Good luck!
LEX

[L. Thomas]

Most people have little or no problems with instills. The skill of the person doing the instills, size of the catheter and your physical anatomy are probably the most common things that determine if you will have any discomfort. There are far more people that have instills without any problems than have problems with instills. Most do have relief from IC symptoms.

Probably the most inconsistent part is the length of time it takes to feel the results. Some, like me, have instant relief. Others find it takes several instills before they see results.

The instill ingredients you are using are pretty standard. I have never had a steroid added so I don't really know about problems from them.

If you read the links in my signature you may be able to find more helpful information.

I think you will do fine.

[ICNDonna]

The best advice I can think of is to concentrate on relaxing. The more tight you hold your muscles, the more uncomfortable it will be. It only takes less than a minute and hopefully it will improve your symptoms.

Warm hugs,
Donna

[lisarb]

I get heparin, sodium bocarb and lidocaine instills and my nurse practioner who does them is so good and quick I barely feel them. I was getting one a week for the past few months and now I am going every few weeks. Every one I got gave me a few more days of relief than the last one until now I have gone 2 weeks and today is the first night I feel sorta uncomfortable. The most I ever get is some bladder spasms after, but not horrible I just take an extra 5mg ditropan and I am fine. Sometimes I feel a little light headed after but that is very uncommon from what I have heard and it passes very quickly. I hope they provide you with the same great results I had and I am sorry you are scared. I wish the nurse was nicer to you, my nurse is so nice to me and compassion goes a long way. Let us know how you do.

[Preacher-Girl]

Is there only one nurse? I am the worst patient on earth but I don't care. If you can't get along with your nurse and there is another one you can make a request. Not everyone likes everyone.

[justice4j]

Hi There,

I usually get immediate relief from instills. Others don't. Sometimes if it's really a PFD spasm in my case and I guess wrong, it may temporarily cause a little more discomfort, but it has a finite point. It doesn't continue indefinitely. Not giving medical advice here, but this is how I deal with it; both as a former ER/OR RN, jazz pianist with performance experience and IC patient. What I'm about to tell you has gotten me through difficult situations in all three roles.

I think you can get through this. So many of us have, and even with Nurse Ratchets presiding.

If you get stuck with her - let's hope it's her day off- just meet her eyes and say something like, "I'm a bit apprehensive so could you go slowly and explain everything before you proceed? I'd truly appreciate it." I find that when I get into my "head" rather than "emotions" by using formal sounding verbage it turns some kind of switch away from the emotional difficulties of things. I've had lots of practice, but I'm betting you can get there before the appointment! You are an IC PATIENT, TOUGH, SWEET, SELF-EMPOWERING, KNOWLEDGEABLE, KIND, and COURAGEOUS. YOU CAN DO THIS!

I am so very sorry for the lack of empathy on the part of the
DONNA is absolutely right as tough as it is. BREATHE deeply from the diaphragm. VISUALIZE yourself going through the 2 min. at most procedure beforehand with the utmost poise and control and breathe breathe breathe as you are lying down with your eyes closed envisioning successful treatment.....this will help reverse your anxiety a little. Actors and pro athletes and jazz pianist like me :) have done this "ACT AS IF" exercise tons of times. It got me through 7 months of stage fright that was really out of control.

I tell you, for me, one of the greatest feelings of TAKING BACK CONTROL a little control from the beast is doing the instills at home. I was taught by a special ed. teacher who was another patient of my uro's. With her permission and mine, I went to Peggy's home where she walked me through my first self-instill, loaned me heparin and at the time -we were using only water then- sterile water. She refused to let me replace it and gave it to me so that I wouldn't have to wait for the special order to come in. I wish I hadn't lost contact with her. She was my:angel:

I digress....sorry....if you are stuck with nurse Ratchet, TRY THE BEST YOU CAN TO AT LEAST APPEAR THICK SKINNED b/c she will likely pounce more if you don't. I realize what I'm asking is beyond DIFFICULT, but try. You might look at it as triumphing over her despite her attitude, to get the care you need. In that way, you regain some control in a situation where you feel too vulnerable.

It is not that bad. I have done at least 10,000 self instills over the last 11 years. When I'm in certain kinds of pain, I welcome the relief I get and I administer it myself in my own home where I can lie down immediately after if I want to. I have also learned the differences for me between bladder irritation and PFD spasms which had a bit of a learning curve for me.

One thing Dr. Parsons said is to not drink tons of water after an instill--- now again----this is just one docs opinion and said to me as HIS patient--- but it makes sense unless you're getting DMSO. Dr. Parsons feels that drinking tons of water after the instills particularly dilutes the treatment. It does make sense.

AGAIN just MHO and what was told to me by my uro. Others have differences of opinion here on the boards and elsewhere. If I drink tons of water, I am in the loo every half hour. If I drink alkaline water by sipping when I'm thirsty, it works better for me.

BEST OF LUCK! YOU CAN DO IT!

[Rubes]

Thank you, thank you, thank you for all of your advice and compassion. I actually cancelled the instill for today because I felt like I needed to talk to the dr. since she was giving me info that contradicted when he said. (She also didn't know that Elmiron can be instilled...??). Luckily (or, perhaps I should say miraculously), my uro had a cancellation for tomorrow afternoon, so I am going to see him then. In the meantime, my gyno prescribed Elavil for me to try. Now, I am sort of happy I cancelled the instill because I feel a LOT better. Isn't that strange? I was miserable yesterday from the bladder pressure and burning, and I took the Elavil (25 mg) at 6 p.m. (thanks to the good advice on this board), and by 8 p.m., I felt a little drunk, but not in pain. I slept great last night and feel 95% better this morning. It could be that the flare was on it's last leg anyway, but I'm sticking with it. I was thinking that it wouldn't work since nocturia isn't really a problem for me, and neither is frequency during the day. I usually just have that full bladder pressure and burning even when my bladder is empty. Time will tell, I suppose. I'm going to have him start the Elmiron tomorrow as well.

You guys are all angels. Thank you for your compassion even in the midst of your own suffering. That is love in action!

[stac7_8]

I'm sorry to hear that you were so scared about your Instill....and that RN, I would ask for a different one also...

My advise is this...listen to your gut....if your to scared because you don't understand something, then going back to see your doc is the right thing for you.

I'm one of the few that the instill did not work, let me explain that...I only got like 2 days of releif and to me it wasn't worth the cost to have it done...now that is my own personal op ok.

Everyone on here is different in the way that their body is going to react to something....so just remember the more stressed you get about something the more pain you will be in....I believe we all can say that is true.

I hope it works out for you:smile tee:angel:

[Preacher-Girl]

Great news!!! Elavil rocks. I hope it works for you.