Rescue Instillations - How Often?

[Patty1961]

I am currently experiencing severe pain in my lower right side and since my uterus, tubes & ovaries, and appendix have been removed, the only logical conclusion is it must be my IC. I put 10cc Marcaine and 5cc Sodium Bicarb in my bladder yesterday to try to determine if the pain is indeed IC related and it did seem to help a little. My Internal Medicine doctor is running a urinalysis and C&S over the weekend to see if I have a UTI. She said I may could put more Marcaine in but wasn't sure how much or how often and was unable to speak to my urologist until Monday. Any recipes, advice, frequencies, etc. would be greatly appreciated. Thank you for your concern and help.:confused:

[Imustpee]

At the very end of my worthless bladders' life I was instilling at least twice a day...needless to say, it didn't work and I had my bladder removed...

[Romans8:28]

I do Preservative free lidocaine 10cc, sensorcaine 10cc, sodium bicarb 10cc, 100mg solu cortef powder mixed with 2cc of the sodium bicarb, & 80mg 10cc gentamicin. I do this every 4-5 days but my doctor has allowed me to do it in a flare sooner. I can do them without the steriod daily if I choose.

There are many other brew's listed. Search brews, I ask awhile ago for people to list their brew/ instill formula and we had many responses.
The ICA website aslo has a list of the top IC doctors formulas as well.
My doctor and I have used a combination of this info to help me find what worked.
I am up (1am) because of flank/ right side pain as well but I think mine is a kidney stone. My instills hlep my bladder but make my kidney feel like it is backing up and hurt!
Hope you feel better soon a:grouphug:

Shelly
help

[Sarojini]

I generally do my instillations at home, on average twice a week. Sometimes less, and during a flare, sometimes more -- say, once a day for a week. I don't like to do them more than that because then the excessive cathing seems to irritate my urethra and bladder further and this outweighs the benefit of the instillation.

The recipe I use is: 5 cc 2% lidocaine, 5cc 4.2% sodium bicarbonate, and 2 cc heparin (40,000 units/cc).

[Dixiefireball]

at one time (WITH DR'S APPROVAL) I was using my heparin and marcaine treatment four times a day. Granted I did do these treatments for three time a time for about two years, before I we moved them up to four times a day.

Has your Dr. checked you for hunner ulcers? The reason I ask is because I do have hunners and that is the cause for that awful painful feeling I have on my right side.
I have that feeling right now and have surgery lined up for Aug 9th to have them removed again. Granted they are other way to get rid of hunners or at least settled down the feeling, but for me surgery is the only way.
not a lot of icers has hunners, but once never knows when one may pop up unwelcome. Ask your Dr. if they believe hunners may be your problem
sending you hugs and prayers.
Rhonda

[Patty1961]

Thank you for your advice. Are hunner's ulcers found during a routine cystoscope? Because I have continued to have pain after my appendectomy and all cat scans since then have showed that I still have an appendix or appendicolith, my gastro has ordered a barium enema for Thursday to rule out cecum diverticulum, etc. My last cysto/hydro was in Nov. 2005 and I had severe right sided pain afterwards, but he didn't say anything about an ulcer. When I asked my uro last time about doing another cysto/hydro he said he's trying to get away from doing them twice a year so I guess I must wait. :help:

[Dixiefireball]

they would be able to find hunners threw the o.r while doing a hydro/cyst. I don't think they can find them in an in office cysto.
ask your uro if your before hydro/c in the O.R showed anything like hunners??

best wishes.
Rhonda

[Kimchi]

I do my instills every single day. If I try to skip a day, I have terrible pain. I use a 5 French cath too and I don't get irritated from that.

[Patty1961]

Thanks for your help Kimchi. Would you please tell me what medications and amounts you use for your instillations. Thank you. :)

[Kimchi]

I do 10 of the lidocaine, 5 of sodium bicarb and 2 of the heparin or 1 elmiron pill. I have better results with the heparin then the elmiron though. I am not sure on the milligrams of these. I can check my bottles and get back w/ you on that.

[ICNDonna]

I also have Hunner's ulcers, but for me they don't cause huge problems.

Had anyone considered the possibility part of your pain could be from adhesions? I know when I was being diagnosed I had a double whammy --- an exploratory pelvic laparotomy showed I had very widespread adhesions along with the IC. It made a huge difference to get rid of the adhesions.

Donna

[Patty1961]

Hi Donna, Thank you for your reply. Even though I probably do have adhesions since I've had 6 prior laparoscopy procedures to remove gallbladder, tubes & ovaries, etc., all of the doctors I have spoken to are afraid to explore me because of the 6 prior surgeries and the probability that I do have adhesions. They say as long as they don't interfere with my digestive system, I should not pursue any further surgeries because they'll "just grow back and probably worse than before and cause possible intestinal blockage". To make matters even more complicated, my bladder has dropped and I keep having repeated UTI's, but I guess I have to live with it. So thats the monster I'm up against. Any suggestions would be greatly appreciated. :help:

[Kimchi]

Patti, I have heard the same thing about the adhesions. I too had them very severely. Also, you have to take into consideration, everytime they go in, it causes more scar tissue too. I hope you find some relief soon. The instillations have been a godsend for me.

[rosesitty]

For two years I had instills about every 2-3 months and it was enough to hold things at bay. In November, I had a horrible flare and was having an instill once every two weeks. They decided to do instill therapy 3 x per week for 6 weeks. After five instills I got the worst UTI I've ever had, and haven't had an instill since. For me personally, the more frequently I have instills, the more likelihood of infection, either yeast or UTI's. Just me, I guess.
Stephanie

[Dixiefireball]

My hunners was removed Weds Aug 9th they where burned off. since then my lower back pain has been relieved! it was the hunners no doubt in my mind that was causing this awful pain. My uro even told my husband that my lower back pain should stop bother me for a while.
I know scar tissue can cause pain also, but it never hurts to have it checked into to be on the safe side that way you know for sure what your dealing with and how to handle it.
some Dr's will try to remove scar tissue if it is causing a great deal of pain.
Talk with your uro. they will be able to point you in the right direction on what needs to be done.
its so important to work closely with the Dr. who is treating your pain. Let them get to know you as a person not just a patient the better they know you the better they can help you.

sending you hugs and prayers
Rhonda

[Dixiefireball]

Stephanie,
if you found the installment where helping you minis the fact of the UTI and yeast infections talk with your uro they may be able to put you on a low dose anti. to control most uti's from starting hopefully the low dose of anti will be low enough not to cause yeast to start.
Its worth a shot talking to your Dr. about this issue if the installments where helping you. I honestly believe the heparin installment are the best because they work like elimron, but yet its stronger and works quicker because the body isn't having to break it down its going right where its needed into the bladder.

sending you hugs and prayers
Rhonda

[Romans8:28]

Glad you feeling better Rhonda!!

[lonedog]

I have been controlling IC very effectively with hydrodistensions for 5 years until the last one didn't work. My Doctor started me on rescue instillations this week and plans to do one a week for awhile. My question is: is that enough to do any good and what is he tying to do; put the IC back into remission or just get me by. Put another way can rescue instillations give you relief for several months or is this just a weekly maintenance thing. Being a male I don't know much about this.

[Romans8:28]

For each person it is different. Many doctors do it differently too! My doctor starts everyone out on weekly instills for 6 weeks then tries 2 weeks etc. I have one friend that works through the series and then is fine for months. Many patients don't ever get past once every 2 weeks etc. For me once a week was not enough so I learned to do it at home and now do instills every 4 -5 days. They may put you into remission, let's hope! If not they are a great pain management tool!
Best Wishes!

[Dixiefireball]

I'm a woman and being doing the rescue treatments going on three years now. I've even done them at one time four times a day (Dr's approval.) my heparin rescue treatments help me go into remission at one time for eighteen months. mostly its just a maintenance thing, but remission can happen. some things that may help you is. ask for a latex free cath. (even if you don't have a latex allergy this can stop a lot of burning down below.) ask for numbing gel before the cath goes in. If you have pain medicine have someone drive you and take one before your treatment. (I figure this is going to be worse on a man than a woman, but Please give it enough time to see if it will work or not.) if you have a nerve pill something like a klonopin that can help too. that will help clam your nerves, relax you and stop any spasms that may happen after the treatment. remember the more you relax the easier it will be. take a deep break in when the cath is going in then slowly exhale. this may help a bit with it going in.
I would also ask for marcaine instead of lidocaine sp? Marcaine is much stronger of a nerve block medicine that goes into treatments then the lidocaine, plus less side effect.

Hope this helps.
sending hugs and prayers.
Rhonda

[Katrina]

lonedog,
How often with rescue instillations varies a lot by how bad you are. I did one a week for a while...found that helpful but wanted faster results so asked to do two a week....which was ok with the doc.....than after a while I moved down to when needed which became less frequent slowly.
These are some things dr. Moldwin said in his lecture when brought up men and instillations:
catherization more comfortable for those with senstitive urethras
lots of lubricationfocus on do some deep breating to help relax....lamaze
size of catheder

the downside in a man is that passing a small catheter through the urethra is that there must be some stiffiness for advancement...smaller cathters are floppier
10 french catheter recommended.
Hope that helps!! :grouphug:

[walnut]

It appears from these posts that the amount of rescue instills per week or even per day vary immensly What I cannot understand is how long people are doing them. For instance when I had DMSO Cocktails I did them every week for six weeks with no follow up which was rediculous. My doctor insists I had monthly follow up for a while but she seems to remember things that never occured and I should get the rest of my records. ANyway I never had them and after going into "remission" for several months started to flare and always had to wait to see her for about three months while in the middle of a flare. I have gotten of the subject with my personal stuff. What I really want to understand is no one is saying they do the rescue instills for several weeks at a time say when a flare begins or do some as maintenance. All that is posted is that people do them frequntly regardless of flare usually. Does this meen that most people are doing instills on a regular basis all year round? IF it works for me I have no problem with this. I just want information so I can understand it and evaluate what might be best for me with my new doctor in two weeks.

[rosesitty]

I can't do instills one right after the other. I was having one about every two months for several years and they were helpful. My uro decided to try 3 x per week for 6 weeks and I developed a horrible UTI. Haven't had one since. We all react differently.

[Romans8:28]

The reason no one is giving you a time frame is because even here every one is so different. I do rescues ever 4-6 days. This not maintence but survival, I need them that often. I have a friend who when she lets it get too bad does a round of rescues weekly for 6 weeks then goes for months inbetween!
This is with the same doctor and the same meds!

[lonedog]

My one and only instill was a disaster. Made me much worse and I want do one again. I had another hydro two days ago. I will give it a few weeks and see what happens. If it puts the disease into remission I have bought some more time; if not I am out of options.

Lonedog

[Kimchi]

I do mine every single day and have been for almost 2 yrs now. If I do not do the instills, I can not function. Even skipping one day is unbearable. I sometimes even do them 2 times a day. My Dr said there is absolutely no danger in this. I hope he is right!

[curlycue]

Hi Ladies,
I was wondering if anyone know what happens if you make a error and put the Rescue treatment in the Uterus? or the other hole we have? I do the instills 3 times a week and I have gotten a little confortable doing them so tonight I went ahead as usual and put the cath right in it was in the wrong place before I knew if I had put the Meds in and it really burned? anoyone knows what happens?

[rosesitty]

This happened to me once. If just ran out when I stood up and they had to redo it. The nurse was very embarassed.
Stephanie

[Kimchi]

don't have that uterus no more so I am not sure. It probably does not do much. Call the nurse at your Drs office to make sure though

[walnut]

Went to a new doctor. I used to have DMSO cocktails with cortisone, heparin and marcaine. They worked for several months. In 2005 I had one and had discomfort so the doctor stopped them. I had more frequency and pain for a couple of months. She is willing to try them again.

Dilemma.

The new doctor want to do Elmiron, Lidocain, sodium bicarb. Instills. I am more inclined to do Heparin. He says Elmiron in studies has been shown to work better. Is this the case? Does anyone know or just one study he wants to quote? He said he would do the Heparin instead if I insisted. Should I/ I just thought Heparin was more natural in the body and Elmiron is more a drug? AM I correct here?

Lastly even though I kind of think I should try the rescue instills now I wonder if I have given up on the DMSO cocktails to soon? Lots of questions.

He put me on Lyrica. Does anyone have any experience with this drug?

I am worried I ma not making good decisions. But he is right in that I have been unable to get any treatment for several years and any treatment is better than none.

[Kimchi]

I started my instills on elmiron. I used them like that for over 1 yr. Then I was switched to Heparin. Personnaly I have a better result w/ the Heparin. But I would try which ever my Dr recommended. You can switch if it does not help. I get great relief from my instillations. I take mine every single day. If I skip a day, my pain increases alot.

I have been given a rx for lyrica but my insurance won't pay for it and I can't afford it. I have heard really good thing about it.