What to expect w/rescue instills

[Chloe68]

Hi all,
My doc suggested I get 6 instillations (over 6 weeks). Can anyone tell me how I should plan for these? I have a full-time job. Should I get them on a Friday and recover during the weekend, etc.? Should I take the whole day off or is it possible to just get up and go to work afterwards? Any advice welcome. Thanks.

[bunnykinb]

I had DMSO instills which burned like crazy. I was in pain for days. I am now getting heparin, sodium bicarbonate, and lidocaine every two weeks. I am able to return to work without any problems so far for the last 3 instills that I have had.

[Chloe68]

Thanks - Are you all back to normal immediately after the instill so you can go right to work from the doc's office, or does it take a few hours to be able to void normally, etc.?

[ngazerro]

I was getting rescue instills once a week and I went right back to work. They actually make your bladder feel great..You should not have any problems. I did have pain with DMSO instills. After the DMSO my bladder would really hurt that night..

[Chloe68]

Thanks for this info! Very helpful... it sounds like DMSO hurts more than it helps? I've seen quite a few negative comments about it on this forum... did it benefit you at all despite the burn?

[soccermom32]

I think you should expect a blissful several hours of a bladder that is soothed and not in pain.

Ask the nurse to use lidocaine on your urethra first before doing the instill.

You can get right up and go. Try to hold it in as long as possible.

I love instills! I do them at home now.

[bunnykinb]

The DMSo burned so much I could barely hold it for 10 minutes. I had to stay at the doctor's office because there was no way for me to wait until I got home.

With the heparin instills, I held it 3 hours last week. I did have some burning upon the initial restroom visit then lots of air a few restroom trips later. It was embarrassing because I had air coming from the urethra and someone was in the stall next to me.

[Chloe68]

Wow. So it sounds like many of you have had DMSO and it was very painful, but I haven't heard about any benefit in exchange for all the pain. What did the doctors tell you about how it could help you? Or does it not help? I just don't understand why that would be given if all that happens is pain.

[bunnykinb]

The last uro told me that DMSO, Elmiron orally, and bladder stretching are the only FDA approved treatments for IC. I had already had monthly heparin instills before but felt it wasn't helping but maybe never gave it a chance. I went back to the first urologist 2/08. I told him how painful DMSO was and he was willing to try heparin more frequently.

[L. Thomas]

I have been doing home instillations of lidocaine, heparin, and sodium bicarbonate since 2004. I have had no side effects. I am able to do anything I want after an instill. I have instilled during shopping, ballgames etc without any problems.

The ingredients in the insill will make a difference. You will probably be OK with an instill with the ingredients I use but if other ingredients are used you may have some discomfort.

I would ask about the ingredients before I had the instill. If you are concerned you may be uncomfortable you might want to schedule your first instill late in the afternoon or on Friday afternoon.

[bunnykinb]

I am the first appointment in the morning when the nurses are the least busiest to help me with learning. When I would get the DMSO, I was hurting for days.

[lissad]

You will feel some relief with the instill . I do them 3x per week at home . I usually take a pain med right after the instill just to help from the catheter pain . The real relief for me usually slowly happens the next day

[bunnykinb]

Oh yeah, I either take a pyridium right after my instill or most of the time I take a urelle the night before and in the morning after breakfast. Urelle takes awhile to go through.