Afraid to have my first rescue instill!!

[Sharon]

I am considering a rescue instill for the first time. I spent years trying to find an doctor knowledgeable about IC. Now that I have one, I am terrified to try the instills.

I have heard some talk about their pain after having a rescue instill. Others talk about the relief they have.

What should I expect? Pain, bladder spasms? Does it help the majority? What should my first solution consist of? Any advice would be greatly appreciated!

[waterflow]

I was terrified of having instills done too but because of the catheter. It was so painful having one done but after I had my erurhtra stretched twice and using lidocaine in there and on the cath is made is so much easier. The cath is now my friend. It really is diffrerent for everyone. In the beginning I had a lot of pain after having one done but after the instills started helping the pain from them wasn't that bad. For me the heparin/lidocaine instill is the only thing that helps my bladder but there are so many combinations to try. It's like playing the lottery really. Sometimes you win the million first try and other times you just win .10 . Good luck with it.

[kadi]

Rescue instillations have been my miracle. I wasn't sure when I first started them, but trying different catheter types & sizes made a difference. Over time, the relief I have gotten from the instillations has been greater & greater. I now have a life that is a lot like the life I had before IC: I can wear jeans again, exercise again, travel, work fulltime without strain, take sign language classes at night & attend church. For several years, IC shut down everything except my job & even just that was really hard to manage. The rescue instillations, plus physical therapy & my oral meds, have returned me to a good quality of life.

I hope you get great results! They're definitely worth trying:)

[ICNDonna]

Instillations of different meds help a lot of people. It's important to remember that for every treatment option and for every medication, there are horror stories out there!

If you do happen to have some irritation from the catheter, it should resolve within a day or two --- and there's a distinct possibility that you won't have any problem with it and it could help you feel better.

Warm encouraging hugs,
Donna

[lissad]

I have done rescues for 2 years now . Initially at the URO's office and then I learned on my own. It is not scary at all. For me the cathetor is a tiny pinching feeling and done very quickly .The real relief for me is usually not realized until the next day . It is not like a light switch just a gradual improvement of symptoms and I have never gotten bladder spasms or infections . The recipe is different for everyone depending on the URO you see . good luck

[GriffsMommy]

I was worried about them at first too but I have always been willing to try any treatment offered to me since I have not really responded to any of the treatments I have tried.
In my experience the cath is what caused me the problems and discomfort at first. It wasn't until I was introduced to the urojet that my cath problems stopped. The urojet is lidocaine with an applicator that allows you to squirt the lidocaine up into your urethra. That has stopped all irritation the cath caused me in the beginning. As for what meds are used there are so many different "recipes" that dr's use that you should really try what your dr normally recommends and then if that doesn't work ask if your try may want to try to change some of the meds to find what works best for you.
I personally feel like everytime I'm offered a new treatment that if I don't try it then I'm not doing everything I can to try to get better. I realize that there are some people who are unwilling to try certain treatments and I totally respect that since it's each person's own choice.
Good luck and let us know how it goes.

[L. Thomas]

When my urogynecologist first suggested a "cocktail" I told him somehow I thought that sounded a lot more fun than it would be. I didn't have any problems with the instill. I got immediate relief and it has been the only treatment I have used.

I don't think there is any way to know what your reaction will be. All you can to is go into it with a positive attitude and know that there is research that strongly indicates that instills are very effective in treatment of IC.

Responses the board indicate that DMSO are more uncomfortable and lidocaine, heparin, and sodium bicarbonate cocktials provide less discomfort.

I hope everthing goes well.

[Dixiefireball]

its important to remember we are all different, its also important to remember that each new treatment takes time to see if they will work.

At first I thought my installments was a nightmare. They did hurt. I gave up. to make a long story short after everything else had felled I was up against a wall. I had no choice but to try again. I felt like kicking my self in the behine for not giving the installments enough time to work. turns out that the rescue installment ended up being my answers. After giving the treatment enough time to work I went into remission. I'm still in and out of remission. Thanks to real UTI's (not due to the installments) I even take my installments while I have a UTI. (not recommended) They numb my bladder and take away a great deal of pain.

Different Doctors use different medicine in there installments. If one doesn't work doesn't mean they all want. If you decide to go forward with the installments and after a few months you don't see an improvement ask the Doctor to change some things around.
it will help during the installments if you will relax.
take a deep breath in while the RN puts in the cath. (you may want to ask for a latex free cath)
If you are nervous about the installment have someone to go with you. If you have pain medicine take it before the treatment. (have someone with you to drive you home)
try to get it on a Friday so you will have the weekend to recover. (if you have any side effect or pain afterward.
drink lots of water.
I hope some of this info will help.
Rhonda

[bunnykinb]

I was very scared first. DMSO hurt like crazy, but the heparin mix and using urojet numbing gel in the urethra made a whole lot of difference. I am so glad my bladder is responding.

[Dixiefireball]

I also suggest not to use DMSO. DMSO does hurt. A while back they was a report listed on the boards I believe if i'm not mistaking stateing that DMSO can do more damage to the bladder than it helps.
Rhonda

[bunnykinb]

I had tried heparin and sodium bicarb back in late 2006 but only once a month. I should have just stayed with that urologist and then we would have worked out a more frequent schedule. I went to a second uro who really didn't know about IC. Then onto a third uro who only like doing DMSO. I thought I would never get relief, until I went back to my first uro with heparin, lidocaine, and sodium bicarbonate.

[daynuts06]

I am totally freaking out!!! I just had the interstim put in and flared up bad!!!! The dr that I am now seeing wants to do the cocktail with lidocaine, DMSO, hydrocortizone. I have never had it done like this before and AM freaked. Anyone else have this done before? Is it painful? I have special caths to use but I have never had the DMSO mixed like this before. Please help!!

[bunnykinb]

At the last uro, I had DMSO mixed with solucortef (a steriod), but it just burned so much.

[L. Thomas]

I do resuce instillations. My cocktail is 8cc lidocaine, 10,000 units heparin, 2cc sodim bicarbonate. I have never had anything added to it.

It sounds like you are not having a resuce instillation but a "customized" DMSO instillation. It seems that there are more that have pain with DMSO than with a heparin cocktail. I have never had pain with or after my cocktail although I do know that instills can cause a flare with some people.

There is a "sticky" thread on DMSO treatment for IC on the board. You might want to check it out.

[daynuts06]

The old urologist was doing the heparin, sodium bicarbonate, and lidocaine. When I talked to the nurse last week at the new urologist she said that she would do it the same way and now this dr wants to do this stuff with the DMSO which scares me BAD. Also I asked if I can learn to do them at home and was told flat out NO. Asked if I can b&o suppositories and was told no. My husband thinks all of this is in my head.

[L. Thomas]

Also I asked if I can learn to do them at home and was told flat out NO. Asked if I can b&o suppositories and was told no. My husband thinks all of this is in my head.

I think you might want to get a second opinion. There are many, many of us that do instills at home. Your husband is wrong.

[daynuts06]

The nurse there told me to get on this website! She said that the dr said that they HAVE to use the DMSO. I told her that I have concerns about that. I explained what my concerns were. I also asked her to check and see if there are any I can do at home instead of missing work and driving to the city all the time. She was rude to me which I expected. I just can't take it anymore.

[bunnykinb]

No, the urologist does not have to use DMSO. If that is all that is offered, seek another doctor. I went through 20 DMSO at the doctor's office. OMG, it hurt so much and I cried every time I went to the restroom right after. With heparin, lidocaine and sodium bicarbonate, I haven't cried at all and I am able to go to work right afterwards.

[daynuts06]

So went to the dr and they took out the DMSO. So it was heparin, lido, and hydrocortozone. She said they do them once a week and they are going to teach how me how to do them at home. Also suggested physical therapy to help with the urgency.

[bunnykinb]

I am hoping I am just having a stress flare and not that the heparin instills aren't working. I have been feeling better, but the past 4 days, I have had burning again. My son had his 8th grade promotion so maybe it was the stress of getting things ready, my baby is growing up and off to high school, and running around a lot for year end school stuff.

Does anyone still have flares while doing instills?

[daynuts06]

I met with my new urologist yesterday and she told me that because I have been getting instills forever that they can be damaging and make symptoms worse. she said she doesn't believe in them unless the patient is dire need. But she said that they only bandaid the problem. She said that I am "addicted to getting instills" because that is what I am use the old dr doing. She really believes that PT for my pelvic floor will stop some of the urgency and lessen the flare ups. I have had treatments with solely heprin before and they did nothing! Ask about the IC Cocktail it works for some people. I was still getting them over the three week mark and started to get worse.

[L. Thomas]

I met with my new urologist yesterday and she told me that because I have been getting instills forever that they can be damaging and make symptoms worse. she said she doesn't believe in them unless the patient is dire need. But she said that they only bandaid the problem. She said that I am "addicted to getting instills" because that is what I am use the old dr doing. She really believes that PT for my pelvic floor will stop some of the urgency and lessen the flare ups. I have had treatments with solely heprin before and they did nothing! Ask about the IC Cocktail it works for some people. I was still getting them over the three week mark and started to get worse.

I think if you are having symptoms you need to investigate all possibilities that your MD offers. You can make the judgment about which are the best for you. My MD totally disagrees with your MD. concerning instills.

I do think it is important to remember there is no treatment that works for everyone. There is no cure for IC at this time but almost everyone finds treatment that is successful. I feel sure that working with an open minded MD that keeps up with current treatments of IC is a good place to start.

Keep in mind most of the posters on this forum have had a lot of experience with a multitude of treatments. Some are still looking for a treatment so you may find more post on what has been tried and doesn't work than what had been successful. That doesn't mean it won't work for you.

[daynuts06]

I agree with you on the open minded MD. I think that I just need a break from the treatments. She did say that she will do them if I feel really bad. It's just I noticed that work sometimes and other times they don't and do make things worse. My husband is against them. I was going to ask my new dr if I can start doing them at home. But right now she wants to focus on my PFD and also the interstim. Since we are going through programs on the Interstim she is worried that if I still do the instills that we won't be able to tell if its the interstim that is working or if its the meds.

[bunnykinb]

Can you get flares even with instillations?

[L. Thomas]

Yes When I flare I know it means I need to do instills more frequently.

[lisabar36]

I was in a huge flare when I got my first instill. It helped me SO much. I had one a week for 6 weeks. I had to drive over an hour each way so then when I went to a different doctor, they didn't help me as much. They used a larger cath and I was getting spasms, it was the same solution but the larger cath but really irritating my bladder. They said they could not get the smaller caths so I stopped them. I am hoping to restart them with the new uro I am seeing next month.

[bunnykinb]

I ran out of sample catheters. The nurse thought the office cath was a 14. It turned out to be a 18fr. OMG, maybe that is what is causing this burning. Duh, she already knows I have ouchies down there.

LThomas,

If you use 10,000 units of heparin, how often do you do instills? I have 40,000 cc every two weeks.

[luv]

what do you take flexeril for?