Helpful Hints For Home Instillations

[L. Thomas]

First I would like to share my success story with you. This is the link to my success story. I think it may motivate you to give instills a try: http://www.ic-network.com/forum/showthread.php?t=36385&highlight=Thomas+success

:welcome:
Please do not take my suggestions as medical advice.
Follow your doctor’s instructions.
:shake: I know how reluctant I was when my urogynecologist suggested home instillations :shake: . I had great tips and instructions from his nurse. Because she was so patient and empathetic, it took only 3 visits to learn. :woohoo: Honestly, I don’t think anyone could be more apprehensive than me about self-cathing. If I can learn how to do this, I think just about anyone motivated can learn. Just be patient with yourself.

Supplies for instillation:
8cc Lidocaine
10,000 units Heparin
30cc syringe
18gauge needle
8fr pediatric feeding tube (used as a catheter)

First visit: Observing the instillation with a handheld mirror
(I watched in the office the first time and then I practiced locating the urethra opening at home until the next visit).
Wash your hands before you begin.
1. Sit on a stool in the bathtub.
2. Position the make-up mirror so you can see what you are doing.
3. Use the index and middle fingers of one hand to hold the folds of skin back to expose the urethra opening.
4. Pee in the bathtub and watch for the urethra opening.
I got a make-up mirror on a stand to use at home.
(Did you know a girl can pee like a boy if you hold your skin back?) :lmao: .

Second visit: Finding the urethra “wink” and catheter insertion.
Wash your hands before you begin
Still using the mirror:
1. Hold the folds of skin around the urethra with one hand.
2. Gently brush “down” from the top of the exposed skin toward the vaginal opening with the index finger of the other hand.
3. As your finger passes over the urethra opening it will “wink” at you.
4. Inhale before you insert the catheter and exhale as you insert the catheter. Muscles relax if you exhale.
Another trick to find the urethra opening is to cough while holding the skin back. I practiced this at home in the bathtub until the next visit. :cat:

Third visit: Compounding the mixture in the syringe. Complete instillation.
The first time I used the syringe and needle to draw the mixture I was shaking so much I thought I was going to stick myself. :dizzy: I had trouble keeping the meds form being drawn back into the vials. You cannot let the medicines be pulled back into the vials because it contaminates the contents of the vials. Since the heparin is a single dose vial if you put the lidocaine in the syringe first you don't have to worry if it accidently flows into the heparin as you drain the contents of the vial of heparin. A pharmacist showed me how to fill the syringe using “negative pressure”. A nurse could also show you. It is almost fool proof.

At home:
Wash your hands before you begin
1. Use the mirror sitting in the bathtub until comfortable and ready to try it sitting on the toilet.
2. Sit on the toilet, place the mirror on the floor and position it so you can see what you are doing. You will need to sit WAY back on the toilet and spread your legs fairly wide.
3. When you are ready to do the instill without the mirror, keep the mirror in place, close your eyes and perform the instill. With the mirror in place, if you need to check what you are doing, all you need to do is just open your eyes.
I was successful the first time. Now it seems like "old hat". Cathing is quick. It's filling the syringe that takes so much time.:dance:

I dispose of the catheter, needle and syringe at home and take them to a monitored disposal site.
Used needles are kept in an empty pill bottle with a child proof cap.
People addicted to drugs search garbage cans for needles and syringes.

Cleaning and storage of the catheter for reuse:
My urogyn allows me to use the catheter 4 times. I do not reuse needles or syringes.

1. Washing the catheter:
Wash Only the OUTSIDE with warm soapy water and rinse
DO NOT SUBMERGE THE CATHETER IN WATER.

2. I store the catheter in the package that it was sealed in. When I open the sterile package that contains the catheter, I just open the top and after using the catheter loop it like it was when the package was opened and fold over the top of the package. The inside of the package is sterile.
I keep the catheter and supplies for 4 instill in a cloth make-up bag so I know when I have used the catheter 4 times.

:pray: I hope these instructions are not too confusing and help you. Just PM me if I need to explain any of my hints.


Several have asked “How do you manage all the stuff when you are doing an instill.” I think this is what I do.

Fill the syringe with the cocktail and replace the plastic needle sheath over the needle. With the syringe connected to the needle I hold the needle (with the sheath in place) in my mouth.

I open the catheter and keep it looped sort of like a lasso and hold it in my hand (with my fingers placed where I would hold the catheter to insert it). I keep the the folds of skin held back with the other hand. With practice you will learn how to manipulate your fingers so that you will be able to find the opening with the hand that holds the catheter and guide the catheter with the other hand.

I make sure the catheter is advanced far enough that it will not “fall out”. I hold the catheter in place with the hand I used to insert the catheter. Then I use the hand I held the fold of skin with to twist the syringe off the needle and attach the syringe to the catheter.

I remove the catheter with the syringe still attached. After the catheter is out of the bladder detatch the syringe from the catheter, throw away the syringe. I store the catheter in the package that the catheter was sealed and fold the top of the "envelop".

Keep the catheter attached to the syringe until you have completely removed the catheter from the bladder. If you disconnect the catheter from the syringe before you remove it from the bladder the contents of the instill will "shoot back" out of the catheter.

I have a pouch sized to hold tampons that is just the perfect size to hold supplies for 1 instill so that I can take it with me. When I am in a public restroom I hang my pocketbook on the coat hook so I can reach the catheter and filled syringe.

If I purchase syringes and catheters from a durable supply provider it is covered by my insurance. After my deductible the syringe cost $0.10 and the catheter cost $1.00. I can use the catheter 4 times. The needles cost $0.15 each. The cost of the durable supplies for 1 instill is $0.50 and the meds cost about $0.35 so the total cost for 1iinstill is less than $1. You will need a separate prescription for the durable supplies. The 2 medicines for my instillations are generic so a 30 day supply cost $10.

Hope I haven't confused you with these instructions. If I can help in any way just PM me. I have been doing instills for several years and I don't have all the answers but I will be happy to share my experiences with you.
Louann

[dminton]

Thank you, that's very nice of you to post all that!

Diana.

[L. Thomas]

I know how worried I was in the beginning. I didn't know any one that had done instills and I just had no confidence. I think it would have helped me if someone had been there outside the MD office. Maybe this will give some the courage to give them a try. It may be the answer to their pain.

[kristies2]

About the drawing meds into the needle part, my doctor said to pull out the handle of the needle to draw some air in, then push a little air into the bottle and pull the liquid out. Keep doing that until there's no air left or you have everything you need out of the vial. Otherwise you create a vacuum inside, and it's hard to draw it out.

Also make sure you wipe the top of the vial with alcohol before you stick the needle in, unless it's a single use vial. But the sensorcaine is usually bigger, like you said, and you use that a few times. So pushing a little air in helps you draw the meds out.

Oh yeah, wash the area first as well, and/or wipe it with that red aniseptic stuff...I forget what it's called now. lol But keeping clean helps avoid bladder infections. That would be horrible to have on top of IC.

Kristie

[L. Thomas]

If you push all the cc's of air (8cc in my case) at once, when you let go of the syringe plunger the syringe will fill by itself. When I had more than one med I needed to draw I just repeated the procedure for each med.

[ICNDonna]

I wouldn't hold any part of the supplies in my mouth --- too many germs there. I use a washcloth which has been washed in clorox water, dried, and stored in a sandwich bag to make a "clean" place to lay out supplies.

I found that the easiest way for me to insert the catheter is to put a large flashlight on the floor in front of the toilet, pointed up. Then a mirror on one side of the seat. I put one foot on the other side of the seat and move my body until the light and mirror are allowing me to see clearly. That way, the urine flows directly into the toilet. I then sit down and insert the syringe into the catheter end to put in the liquid, then remove the catheter before taking the syringe from the catheter.

The supplies, with the exception of the needle & syringe, are then immersed in hot water containing antibacterial soap and washed and rinsed thoroughly and stored in another clean wash cloth. My choice for storage is a small cooler --- it helps avoid temperature changes, plus if I want to go away from home, I could just grab the cooler. The cooler is one of those that will hold about six or eight soda cans. It will hold the supplies, plus the meds needed.

Donna

[lafleur]

Before I empty the instill, I use ice externally for a couple of minutes. Seems to really help the stinging upon emptying.

[Christi34]

I am hoping to start instillations, but am deathly afraid of course. I have been putting them off for months. Please tell me a few things: Are you prone to getting UTI's often when using a catheter frequently? I am sure you would sterilize or use a new one, but just by using a catheter so often, are you going to get a UTI? What is everyone's experience with that? I know we are all different. I am just trying to get some kind of idea. Should I ask the doctor for the Lofric brand of catheter? Pediatric catheter? Are most docs using Elmiron or Heparin for instillations? I heard Heparin was hard to find, but that was quite a few months ago.
Thank you for whatever help someone can provide!!
Christi

[L. Thomas]

You have every right to be apprehensive about home instills. I think everyone that started home instills will tell you they were worried or scared. Even nurses that cath people all the time say they were worried. It is just different when you do the instill on yourself.

I guess if you are prone to get UTI you probably will get them. I haven't had any during the time I have been instilling but I was not prone to get them before I started instills.

I did use a new catheter for each instill for the first couple of months. Now I just follow Dr. Dell's instructions. I use a catheter 4 times.

I have never used anything for home instills except 8fr 15" pediatric feeding tubes. I have never had problems using them. A leur lock syringe will attach directly to this feeding tube.

There are some that find lofric are more comfortable. Some prefer a larger catheter. Some MD's have different sizes you can try to see what works best for you.

Elmiron is very effective for some but it was not effective for me. Elmiron is much more expensive than heparin. I use heparin and have found it totally effective for me. I couldn't get heparin for about 5 months. but I have had no problems getting it in the last 8 months.

There are literally 100's of recipes. Instills are not a sure cure for everyone and getting the right instill may not be as easy for some as it was for me. I have a pretty standard cocktail of lidocaine and heparin. At first it had 2cc sodium bicarbonate but I can't tell any difference with or without it.

I am here to encourage but I don't want to mislead you. Like you said, everyone is different. Dr. Dell encourages instill because he has seen such positive response to them.

I am not an expert but I'll be happy to share my experiences with you. Just post or feel free to PM me.
Louann

[Maxeeeeene]

Dear Louann and Anyone else who can advise me on this:

I finally got the ingredients and did my first instill last night. After searching for my urethra I finally found it and inserting the catheter turned out to be must easier than I thought--and not painful at all. However, when I took it out, there was blood on the tip of it. And the instill didn't seem to have much effect. Mostly I felt irritated.

You said you reuse your catheters, right? You just wash them in water and then store them in cloth to dry. I blew through mine to get the water bubbles out. Do you think that means I contaminated it? Also, I can reuse the syringes, right?
Instill formula:

Solu-Cortel 100 mg aet-o-vinl

Sodium bicarbonate 8.4percent 50 cc vials #5

Bupivicaine 0.5 percent 50 cc vials #5

Instillation devices:

35 cc luerlock syringes

8 French pediatric feeding tubes yes

12 cc syringe with gauge 1' needle



Thanks for all you help.



Maxine

[kadi]

Hi Maxine, I would not use a catheter that had been blown through, there could be contamination. I do not re-use my catheters, though my doctor said I could rinse them in hot water & place them in a clean brown paper bag to dry. I had too many infections when I did that however, so I just order enough to have a new one each time. I do rinse in hot water & dry with clean paper towels the mixing cup & the syringes. I keep them in a plastic drawer lined with clean paper towels under my sink. I hope the instillations help you as much as they do me.

[ICNDonna]

Blowing into the tubing could very well contaminate it --- our mouths are the most "germy" part of our bodies. When I was doing self instills, I did re-use the catheters, but I just washed them in very warm water with antibacterial soap, rinsed thoroughly, being sure I rinsed the inside thoroughly, then wrapped them in a clean wash cloth.

Donna

[curlycue]

Dont you ladies use lofric caths?

[L. Thomas]

I don't use lofric catheter. Dr. Dell said not to do anything to the catheter after use other than wrap it in a clean wash cloth. Some very carefully wash the catheter. I would just ask the MD what he suggest. If you think about it, the catheter is in a sterile package and urine is sterile so everything that contacts the inside of the catheter is sterile.

[Maxeeeeene]

I've done the self-instills twice and the effects are negative. Mind you, I've been having instills at the doctors for one and a half years three times a week and the effects have been fine. Sometimes I can hold my urine for as long as five hours after an instill!

I'm wondering if the 5 mg of bupvicaine is too low. I'm thinking of doing two vials instead of just one. What do you think? (I know this is something for my doctor to decide--but she's away and it's Sunday.)The rest of the meds are: Solu-Cortef 110 mg and Socium Bicarbonate 25cc,

Also, I have this weird reaction--gas coming out of my urethra when I pee. Is this an indication that I did something wrong with the catheter?

Now recap: I'm going to reuse the syringes--I rub with alcohol and recap after use and I'm going to reuse the catheters too. I'll boil the ones I blew into and pour alcohol down them--do you think that would do it? The whole thing seems so unsterile anyway--with all the fumbling around.

Thanks everyone.

I can't wait to get this right.

Maxine

[kadi]

Again, ASK YOUR DOCTOR before changing the amounts of medicine in your instillation- it is dangerous for all the reasons I and other people gave you before! Again, the wrong balance of bupivacaine and sodium bicarbonate can cause serious damage to your heart. If the balance is wrong, the medicine crosses the cells of the bladder & goes systemic -- out into the body. Either decide to call her or wait until the office is open.

My doctor's office said to not use alcohol to clean my syringes, I don't know from here if yours are different from mine, so again, ask your doctor. If you're not sure, use a new one for now, until you can talk with your doctor.

Air coming out of the urethra when you void after an instillation usually just means you put a little air into the bladder with the instillation. It just happens sometimes. No problem.

Call your doctor or wait, Monday is just a half day away.

[ICNDonna]

Do NOT change dosages without first talking with your doctor.

Do NOT clean syringes and catheters with alcohol.

Please use a new catheter and syringe and call your doctor. If your doctor isn't in today, you will probably get an answering service --- and the doctor on call should call you back.

I can't emphasize strongly enough that you need to talk with your physician before changing anything about your instillations. There is nobody on these forums who is qualified to answer answer questions about dosages of medications.



Donna

[Jan S.]

All of this information and the entire discussion is awesome!!! I didn't get very good directions from my doc's off (military hospital) and darned if I didn't get an infection. The did tell me to wash the cath in warm, soapy water (antibactieral) but that's about it. I went off on my own about self cleaning. I'm pretty sure I was careless (or stupid!!) and caused the uti myself. I feel much better prepared for the next time, thanks to this discussion.
I'm on cipro now and have stopped all instills. After 6 days I'm supposed to start again trying 2 times a day. They are still so painful I roll up in a ball for about an hour afterwords so will end up going to work late for a while. I'm thinking there is something in her that my body just doesn't like (cytotec, lidocain, elmaron). I'll give it another try though.

I am taking good notes and starting a load of wash for towles and washclothes with some clorox. Thanks You!!!!!!!!!

[L. Thomas]

Just call your MD and ask how he/she wants you to clean your supplies and how many times you should use the syringe, needles, and catheter. The instills contain different meds and changing the amount of ingredients could cause problems...I don't think you should change anything with the instill without your MD giving you the OK.

[Jan S.]

I am removing the sodium bicarbonate - but only after speaking with my doctor. We're keeping the lidocain, elmiron, and cotytec, and in the same amounts. After talking with the doc I also tried 1/2 sodium bicarb tab but it is less painful w/o it, so that's what I'll start with. Thanks!!

[AthenasMommy]

Hello all,

When I first did instills, they worked great. Then, it seemed like my body built up a tolerance to them! So, I gave the nurse at Dr. Parsons' office a call... and she asked me how much water I was drinking per day. I tend to drink at least 6-8 glasses a day. She said that my body most likely is too hydrated for the instills to become properly absorbed. She suggested that I do an instill when I am most dehydrated, and then watch my fluid intake the rest of the day. I tried an instill the other day and I did notice it seemed to work a little better, because I was more dehydrated.

Has anyone else had a similar experience or been told the same thing by their doctors' office? I am just trying to get these instills to work if I'm going to go through all the hassle of doing them, ya know?

Additionally, do you feel that the instill loses its effect after you urinate it out? I do. I even hold it for a long time too, at least 2 hours.

Thanks,

Jessica
AthenasMommy
:angel:

[L. Thomas]

I usually do my instills at night so the hydration issue makes sense to me. According to Dr. Dell you should hold the instill as long as it is comfortable. 20 minutes is about how long he wants people to try and hold it so you get benefit from the instillation. I guess what I am trying to say is if you can hold the instill for 20 minutes I don't think it matter when you urinate.

[Snowden1]

Jessica,
I have similiar results with instils. As I hold it in I feel pretty good. When I void it out my pain returns. Although, sometimes I can hold in for about 5 hours.

[curlycue]

I do them at 10pm as well and then go to sleep get up around 1pm and the marathon begins getting up at 1,2,4,5.7. fun and thats a good night. Good luck.

[kristies2]

I am removing the sodium bicarbonate - but only after speaking with my doctor. We're keeping the lidocain, elmiron, and cotytec, and in the same amounts. After talking with the doc I also tried 1/2 sodium bicarb tab but it is less painful w/o it, so that's what I'll start with. Thanks!!


How are you handling the lidocaine? My doctor wanted me to add some with my installations (20 cc Sensorcaine, 3cc Heparin, 1cc Kenalog, 1 Elmiron pill) because he said it would help make the effect last longer. But the burning was so intense, I couldn't handle it, so I stopped adding it. He prescribed "viscous lidocaine" and I don't remember how much it was, but it was so thick, and there was no puncture thing at the top, it was nearly impossible to draw it into the needle. I managed to get some in, but it took forever because it was so thick.

About the original question about sterilizing catheters and stuff...I've had 2 bladder infections now in the past 2 months and I use a new catheter every time. I wash my hands, I clean the urethra area like they do in the dr's office, with that red stuff, I use a fresh needle and syringe every time and I also wipe the tops of the medicine bottles off with alcohol and let them dry before I take the medicine out.
BUT
a few months ago, I was using the same catheter for a week and didn't have any infections at all. I would do what these guys said not to do...oops...I would wash it with soap and water, but then I'd pour a little alcohol down it to get the water out and dry it out faster and sterilize it. Then I'd put it on clean paper towels in my bedroom to dry. Probably could have caused problems for me doing that. But I find it really strange that I use a new catheter each time now but I still got these bladder infections.
And MAN do they hurt!!!

K

[Jan S.]

This may be a really stupid question - but is it the lidocain in the instills that's causing all the pain?? I thought it would numb my bladder and make the pain go away..??!!! I burn inside my bladder very soon after the instill and for at least an hour after. My urethra also burns and I'm using a very little bit of lidocain jelly on the cath.

[Snowden1]

Jan,
You may be allergic to something in the lidocaine gel. I am allergic to glycol and it was in one of the lidocaine gels. After they stopped using this one I was fine. You can also use surgilube on the cath rather than lidocaine. It could also be one of the ingredients you are instilling.

[kristies2]

This may be a really stupid question - but is it the lidocain in the instills that's causing all the pain?? I thought it would numb my bladder and make the pain go away..??!!! I burn inside my bladder very soon after the instill and for at least an hour after. My urethra also burns and I'm using a very little bit of lidocain jelly on the cath.

Very well could be the lidocaine! Can you leave it out and try it just with the other ingredients to see if that helps? Certainly isn't gonna hurt if you leave it out of the mix, especially when it hurts to use it.

I never considered it would be an allergy. Hm, good point. I wonder if that's why I couldn't handle it either. I just thought it was because my bladder was so raw or something.

K

[Snowden1]

I know some people have tried each ingredient individually to see which one was bothering them. You should talk to your uro about this.

[L. Thomas]

Just wondering if you had a test for UTI or you were going by symptoms. Dell said many times IC acts like a UTI. A negative test tof UTI means it is IC. DO NOT under any circumstance do an insitllation when you have a positive test for UTI. Talk to your doctor about when it is safe to resume instillations.

[kristies2]

Just wondering if you had a test for UTI or you were going by symptoms. Dell said many times IC acts like a UTI. A negative test tof UTI means it is IC. DO NOT under any circumstance do an insitllation when you have a positive test for UTI. Talk to your doctor about when it is safe to resume instillations.

Me? I have at-home test kits which came out positive, so I went to the dr for their test and got Cipro.

[Maxeeeeene]

After having my doctor do the instills three times a week for the last year and a half, I finally started doing them myself.

I've gotten pretty good at doing them---the problem is I'm getting some weird reactions. Also, they're not nearly as effective as the ones I get from my doctor.


These are some of my reactions:
One: I keep on getting bladder infections.
Two: Sometimes I get up in the middle of the night and I can't pee at all. It's like the brain bladder connection has been broken.
Three: Last night I peed in my bed when I was sleeping! That was after doing two instillations within a two-hour period.
Four: Sore urethra.


To deparalzye my bladder, I've been taking valium and terasozin before I go to sleep. Anyone with any luck with terasozin?

[kadi]

Hi Maxeeeene,

Here are some suggestions for conversation with your doctor:
•Technique & Cleanliness: If you keep getting bladder infections and you are new to doing instillations at home, you might talk with your doctor about your technique & making sure you are keeping & storing the equipment clean enough and making sure you are cleaning yourself well enough prior to the instillation to not be pushing external bacteria into your urethra.

•Catheter use: Once you've gone over that with your doctor, if you have not found a reason for the infections, you might ask your doctor for a prescription for enough catheters so that you can use a new catheter each time.

•Low dose antibiotic: If you are using a new catheter each time & there is no other explanation for the infections, your doctor can prescribe you a low dose antibiotic to prevent most infections.

•Did the doctor tell you it was ok to do two instillations in a two hour period? Just like it is important to follow the doctor's instructions exactly in mixing your solution, it is essential to follow the doctor's instructions exactly in how often to do instillations and how long to hold the solution. My doctor would have a fit if he thought I'd done two instillations in two hours! Remember from our other conversations here on the boards that there are risks to instillation medications, risks to your bladder, as well as to your heart, from overdose? Please remember that just like with medications in pill form, medications in liquid form need to be respected and used with care, exactly as your doctor prescribes them.

•If you are unable to void after doing instillations, that is something you absolutely must discuss with your doctor! Your dosage or hold time may need to be adjusted.

It sounds like you are finding some relief with the instillations, just please be careful & continue working closely with your doctor, ok?

[ICNDonna]

Maxeeene: Kadi is correct! You absolutely need to get in touch with your doctor so you can review the instillation procedure. You need to follow his/her orders exactly --- two instillations in two hours could be too much.

It does sound like you may have an infection.

Donna

[curlycue]

Dido Kadi........ follow up with doctor, very important.

[Kathy in Canada]

I have been doing weekly instillations by my self at home for over three years now. I have not had any urinary tract infections. I never re-use any equipment. Please look at earlier detailed posts I have done about how I do it under Kathy in Canada.

Good luck,

Kathy

[curlycue]

I have been doing them since2003, I mix 50.00 units heparin,7 mil heparin 4 mils of sodium barcarbiotae. I use the lofric caths, I never reuse anything. I have been lucky I guess I have never had a infection as of yet (knock on wood)Good Luck.

[curlycue]

L.Thomas..... what size of cath do you use, and again why not the lo fric caths?

[curlycue]

I have been having side pain for a couple of days,so I made a app. and dr said I have a kidney infection? he said that is why I have the side pain? gave me Cipro.

[L. Thomas]

I don't have any problems with the 8"fr pediatric tubes that I use for catheters.

[curlycue]

Maxeeeeene......... I think the gas is air in the syringe, it happens sometimes, kind of wierd. Good Luck

[L. Thomas]

I have been having side pain for a couple of days,so I made a app. and dr said I have a kidney infection? he said that is why I have the side pain? gave me Cipro.
Just do what your MD says. Doing insills when you have a UTI can cause a kidney infection.

[curlycue]

Can I still do instills while having a kidney infection? I ask the dr he said he had no clue? Great I said.

[kadi]

My doctors have said no instillations during a bladder infection-- they can drive the infection into the bladder wall, the bacteria can get carried along with the medicine into the bladder wall & make it harder to treat.

My pharmacist also said that the Macrobid I take for bladder infections will not be as effective if I do an instill at the same time because it works by making the urine acidic and the sodium bicarbonate in the instillations will neutralize it.

Don't you just wanna ask for your copay back when the doctor says he/she doesn't know? (I never actually say it--it's just one of those evil thoughts I get sometimes...)
:evilsmile:

Hope you feel better soon,

[L. Thomas]

Dr. Dell told me that I should not do the instillationsif I have a UTI because it would drive the bacteria into the kidneys and cause a kidney infection. I don't know if the ingredients of your instills would do this or not.

[icnmgrjill]

This is such a superb discussion string that I've "stuck" it.. so that it appears at the top of the list of messages.

[Nal]

I have to talk to my dr about this! Ivehad them done in the office but he's almost an hour away. Id rather do it at home. Thank you for the info!

[pen2005pal]

Quote" Pee in the bathtub and watch for the urethra opening.
I got a make-up mirror on a stand to use at home.
(Did you know a girl can pee like a boy if you hold your skin back?) . "

What about the individuals that have chronic pelvic floor dysfunction and can't hardly pee with the gravity of a toilet seat? You are very blessed you can do that.

[L. Thomas]

Quote" Pee in the bathtub and watch for the urethra opening.
I got a make-up mirror on a stand to use at home.
(Did you know a girl can pee like a boy if you hold your skin back?) . "

What about the individuals that have chronic pelvic floor dysfunction and can't hardly pee with the gravity of a toilet seat? You are very blessed you can do that. If you can't sit on a stool in the bathtub you might try sitting on the toilet and taping a small mirror to the toilet seat. Position the mirror so you can see when you pull the folds of skin back where the urethra opening is located. If you can't see the opening, cough several times. The urethra can be seen when you cough.

[Aza]

Thank you everyone for all the great advice here- you've given me the confidence to try this myself. Just arrived home from the hospital with a stock of supplies for starting my home instills.

The medication i have been given is for "Dr Parson's Thereputic Solution". I was just wondering if there is a time limit on how long i can keep the medication in my bladder for? I am never able to keep my cystistat instills in for very long because i am usually in so much pain from the 80minute drive to the hospital before i have them- it's a struggle to hold it for 30 minutes and i'm always so relieved when the nurse tells me the time is up.

I thought in the comfort of my own home i would be able to hold my rescue instills longer. But is there a maximum amount of time i can keep the medication in for?

[L. Thomas]

Dr. Dell says to hold them as long as it is comfortable. He told me to try and hold it 20 mins but I usually do the instill at bedtime and basically hold it all night.

[Aza]

Doing it before bed was what i was hoping to try!

Thanks for all the advice honey- i am so grateful for the support and encouragment from all the lovely people like you on here, without it i would never have had the confidence to give this a go. :kissing:

[L. Thomas]

You are most welcome. I post to encourage people. My instills are still totally effective. I hope you will have good results.

[Judy Gee]

what great information and support. Do you have to do this everyday or how often do you have to do the instills?Thanks for sharing. Judy G

[L. Thomas]

For the first for several weeks I did instillations daily. Now I need one every few weeks except during my seasonal allergy season. During those time I need one several times a week.

[LisaRose]

I have a question I haven't seen addressed. I had training at the Urologist office on doing the self cath - so far so good, I was able to do that at home. Now comes the difficult part for me. The nurse was a ditz and didn't know why I was getting training (she thought I was getting it to void the bladder, not for instills). After she realized that, I was handed some lidocaine bottles and some cath tubes and sent on my way. I asked for directions, but she just walked away. I opened the bottlebreaking through the rubber seal) and then drew it into the syringe without a needle. But when I put the solution into the cath it doesn't want to drain down into the bladder. Putting pressure just causes it to leak back out. Am I putting the cath too far down? I can't tell if any solution is getting in there or not. The first time I felt like I got more in, but not the second time. I'm not sure how much of the solution I should be getting in - the whole bottle? or what. I would call them, but obviously they haven't done a good job of explaining this to me and the follow up call was no better. The doctor said I would mix the solution and let it sit for 5 miutes. The nurse said to use the solution as is and wait for an hour???? big difference.

[L. Thomas]

I have a question I haven't seen addressed. I had training at the Urologist office on doing the self cath - so far so good, I was able to do that at home. Now comes the difficult part for me. The nurse was a ditz and didn't know why I was getting training (she thought I was getting it to void the bladder, not for instills). After she realized that, I was handed some lidocaine bottles and some cath tubes and sent on my way. I asked for directions, but she just walked away. I opened the bottlebreaking through the rubber seal) and then drew it into the syringe without a needle. But when I put the solution into the cath it doesn't want to drain down into the bladder. Putting pressure just causes it to leak back out. Am I putting the cath too far down? I can't tell if any solution is getting in there or not. The first time I felt like I got more in, but not the second time. I'm not sure how much of the solution I should be getting in - the whole bottle? or what. I would call them, but obviously they haven't done a good job of explaining this to me and the follow up call was no better. The doctor said I would mix the solution and let it sit for 5 miutes. The nurse said to use the solution as is and wait for an hour???? big difference.
You need to go back to your MD and have him give you more instuctions. The instills do have a special amount of solution for the instillation. You shoild also ask the MD to expain the procedure again.Unfortumately this happnes a lot.

[jcmi10236]

You need to go back to your MD and have him give you more instuctions. The instills do have a special amount of solution for the instillation. You shoild also ask the MD to expain the procedure again.Unfortumately this happnes a lot.

I had a similar experience locally. I just started self cathing weeks ago. Why does it seam the drs instil was more effective?
I am using lidocain, elmiron and cytotec(misoprostol) per a cleveland Dr. His theory is stay away from nsaids and steroids that maybe they have caused the bladder issues. I was diagnosed in 2005. Dialations for many years cuz I could not fully urinate. Amazing to me that once I changed my diet I could go. Now oddly my current dr does not really believe in the IC diet. He suggests watching the potassium in certain foods. It gets in the sores etc and caused irritation. Theory!
I thought I had to deal with the pain and that there was no way to improve it for years. This past fall someone said theirs got better and I just teared. What you mean I can look forward to no urethral burning, pelvic pain, painful entercourse and can eat? I could not wait to call the urologist and I told him Im done send me to someone who thinks out of the box. Drove 4 hrs away

So now I am trying the installation. I also take macrobid each night just for a while. I have bladder burning after the instil. Better after I empty. Sometimes worse than others. I have been having urgency worse since I started them. At times thinking I would not make it to the toilet. Maybe the cath is to big. Still continued to have bad urethral pain. It seams its not any better. I have to crush the cytotec every instil. Its hard to do. I empty the elmiron capsule, crush the cytotec and add the lidocain. Cathing much easier than I expected.
I always take my kids to church camp but I dont see how that is possible this year.
Hoping to improve my quality of life and not let it ruin my families.
I guess if I felt some relief when I did them it would be worth it. I keep thinking maybe you gotta go through the pain before it gets better. According to everyones posts maybe I need to contact the doc and see about making some changes. Seams there are lots of options! Thanks

[L. Thomas]

I am not exactly sure I understand what you are asking. As far as having successful treatment of your IC, most do find treatment that does relieve the problems. IC is a life long disease that has no cure as of now, but there are numerous ways to treat it. For some people it does take time to find the right treatment. I hope you can find a treatment that works for you quickly.

[jcmi10236]

I am not exactly sure I understand what you are asking. As far as having successful treatment of your IC, most do find treatment that does relieve the problems. IC is a life long disease that has no cure as of now, but there are numerous ways to treat it. For some people it does take time to find the right treatment. I hope you can find a treatment that works for you quickly.

I did not numb it today and I just used the elmiron without the misoprostel/cytotec. Seemed to be better. I am going to contact the dr and see about changing the cocktail! Thanks

[pdxmom]

I was really scared to do home instillations and it took me a couple of months to make it work. The trick for me was sitting on a low step-stool with a mirror at my feet so I could find my urethral opening. I could not find *anything* sitting on the floor or on my back like many of the instructions recommend. I drain the catheter into a tupperware sitting next to me. I do not reuse my catheters or syringes. I have a mixing bottle that I sterilize using a microwave baby bottle steam sterilizer.

My instillations (now 10 ml 4% topical lidocaine + 400mg elmiron) work really well, but the effects wear off quickly, so ideally I like to do them at least every other day. The catheter can be irritating, so I use a 2% lidocaine jelly and "inject" (no needle of course) a few ml of that into my urethra first. Most of it goops out, but enough gets in to make a difference. If I'm feeling particularly sore, I put a tiny bit of lidocaine on the tip of the catheter too. I recently switched from regular women's Lo Fric catheters to pediatric Lo Fric catheters. I don't think I would have been able to handle these before I was experienced with using the catheter--the pediatric ones are very floppy. But I do think switching to them now has reduced the urethral pain.

If you feel irritated by your rescue solutions, I'd ask about switching from regular lidocaine or marcaine (in a vial that you have to draw up with a needle) to topical lidocaine (in a bottle that you pour out). Switching to the topical lidocaine made a big difference for me--perhaps it was simply the higher concentration (4%) but I think it may have also been the different mix/concentration of preservatives used. I recently tried marcaine (my doctor hoped it might help more because it's long acting) and was surprised to find that it increased my symptoms.

Once I realized the instillations were really helping me, I became braver and braver about doing them. It is invasive and it is a hassle, but if it works, it works! Plus, you can do rescue instillations whenever you need to, on your own time. It's really worth trying.

[eilostnyc]

Are you sure you didn't gain weight from the neurontin? I heard that it could make you gain weight?? I have some but so afraid of gaining anymore weight, I am heavy as it is. I cannot take the elavil, gives me heart palps and its a shame cause it really helped the pain and did so within a couple of days, but my heart was pounding and flipfloping. Anyway, I have a RX for Elmiron but scared to try it, all these darn side effects have me crazy.

[eilostnyc]

Hi Lu,
Thanks for your instructions. I need to practice. Just one thing. After injecting the solution into the catheter, you remove the catheter from the urethra? I didn't understand the disconnect instruction too well.

[pdxmom]

Hi eilostnyc, I had stomach pains and (weirdly) worsened insomnia when I tried to take my full dose of Elmiron (400 mg) orally. That's actually why I switched to putting the Elmiron in an instillation. I don't have any side effects when I use it that way since it doesn't have to travel through my whole system.

As for using the catheter, I'd ask your doctor's office to show you how to use it the first time around. A nurse took me through the process step by step and even then it took me a while to get the hang of it. My process is: Clean off the urethral opening. (I use betadine.) Pre-treat the urethra with lidocaine. (You can slather the lidocaine jelly on the opening and/or use a syringe to push a little medicine into the opening.) Insert the catheter and then connect the syringe filled with instillation medicines to the end of the catheter. Inject the medicine through catheter. When all the medicine is in your bladder, take out the catheter and you're done.

That's basically it.

[eilostnyc]

Thanks Pdxmom.
So the meds just flow right into the urethra via the catheter. Don' t you worry about infection? With all the pain and burning already happening, how do you know if you get an infection? How many times a week do you do this procedure?

[L. Thomas]

Thanks Pdxmom.
So the meds just flow right into the urethra via the catheter. Don' t you worry about infection? With all the pain and burning already happening, how do you know if you get an infection? How many times a week do you do this procedure?

Yes, the meds flow into the bladder but Don't disconnect the catheter from the syringe until After you remove the catheter or the meds will come out of the end of the catheter.

Some do get UTI's when they cath. I am not prone to UTI's so I haven't had that problem. Some of the recipes for the instillation have a low dose of antibiotics. Adding antibiotics to your instillation is something to discuss with your doctor. If you think you have a UTI just call the doctor. They will probably ask for a urine sample and test the sample. I do the instills as needed. During seasonal allergy season it is common for me to need an instillation daily but most of the year I do one every 4-5 weeks.

[eilostnyc]

Hi and thanks for your help. Did you do the instills in order to avoid taking the Elmiron orally? I am trying to figure all my options. I have had no luck with pain meds so far, bad side effects of heart palps, so scarry all this stuff.

[L. Thomas]

I have never told anyone Not to take pain meds. Some people do have horrible pain and basically no options. That being said, pain meds can aggrivate IC.

When heparin was in short supply Dr. Dell substituted Elmiron in my instills.
I tired doing the instills with lidoacine only and I couldn't tell the difference in the instills. My symptoms did return. When I could get the heparin again the treatments did controll the symtoms (It was like I had to start over from the beginning)

Dr. Dell also uses instills with oral Elmiron (to jump-start the effects of Elmiron). Do what works for you.

Oral Elmiron is very effective for most people. Dr. Dell has conducted reserch with Elmiron. He isn't ready to call it a "cure" yet because he feels more valid and reliable research needs to be conducted that show positve results.

[pdxmom]

Thanks Pdxmom.
So the meds just flow right into the urethra via the catheter. Don' t you worry about infection? With all the pain and burning already happening, how do you know if you get an infection? How many times a week do you do this procedure?

Hi Eilostnyc,
I'm very careful about keeping my supplies clean to avoid infection. I use 1-use sterile syringes and 1-use Lo Fric catheters. I sterilize any equipment I reuse with a microwave steam sterilizer. (You can buy these for baby bottle equipment.) Also, I'm very careful about washing my hands. I've been doing home instillations for over a year now and haven't had any infections.

Still, I recommend starting with instillations at the doctor's office. I went in for a series of 6 instillations at the office before I started doing them at home. They can show you how to do them properly. My doctor's office had written instructions and the nurse patiently showed me how to use the catheter several times until I got it.

[eilostnyc]

Hi Aza,
Are you still doing instills? I am thinking about starting soon. I just wondered how long it took you until you were comfortable doing them. thanks!

[Omaklackey]

It took a few trys to really get the instills. I feel pretty comfortable now though doing it and it takes such a short time. I laughed because I did it while my hubby was in the shower and he didn't even know. He asked me when I was doing my instill and I said "I'm done". I was really embarrased about doing it around the hubby or talking with him about it initially. I have a hard enough time with feeling sexy or at all attractive. BUT its been very good, and it was really worth it! So learn this skill!

[eilostnyc]

thank you. I assume you learned this at the doctor's office. I kind of get the drift of it but my concern would be how far do you insert the tube into the urethra, but I guess they will explain that to me.

[L. Thomas]

I did learn in Dr. Dell's office. He wants you to be able to do an instill from start to finish before you start them at home. If I did have questions or problems he wanted me to come in that day so we could figure what I was having problems with.

You advance the catheter until you see a stream of urine or maybe a little more so you can hold the catheter in place. It is not necessary to insert it the full length of the catheter. My catheter is 15" long. I probably advance it 6 or 7 inches. I have never measured.

If I feel the catheter hit the back wall of the bladder, I back of slghtly so it doesn't touch the wall. I think that is what causes so much pain when other people do the cath...they advance it to the mark on the cahteter and it scrapes the back wall of the bladder.

[bjcov]

I so want these instills to work so I can do them from home! I've only had one instill and if anything, I feel worse. It would just save so much money! Say a prayer that I can find something that works will ya? So glad to have the IC network

[Omaklackey]

Just remember at first you may not feel 100% improvement but I have been doing them for three months now at home and I go into an absolute panic when I run out of meds because it does work, and it works well. I just know I really wondered those first few times as the urethra gets pretty irritated from being cathed at first, but after your urethra gets used to it you can do it pain free, quickly, and effectively!!

[bjcov]

Thank you Omak! I'm just feeling so down that it didn't work for me. My bladder is just so sore and I have so much pressure. The urethra didn't wanna work for a couple days which scared me too. I just have to tell myself that time will heal it and it may take a few times to get it to work. now if only doc would call me back and tell me what the next step is! Omak. Did you do them at the office until you felt improvement?

[L. Thomas]

I had 4 instillations in the office. The first was the first day i went to Dr. Dell. He did an instill to see if it would help. It did almost instantly. I went 3 times the next week to learn how to do the instills. Since that time I have done instillations as needed at home. Basically it controls all my symptoms. He prescribed Atarax because I have flares when I have seasonal allergies.

[bjcov]

That is so awesome! I was so hopeful that would be me too! There's always next time

[Omaklackey]

I only did one in the office the rest at home. I did them everyday for several weeks and then it finally started to really kick in. Next thing I know I'm only doing them every 3-4 days as needed. When allergy season hit though I was back to everyday, but it still works, just need it more frequently.

[curlycue]

Omaklackey I am in the same situation I really don't know what I would do with out meds

[Omaklackey]

I can't stress enough the improvement if you can do it yourself. I read through all the bladder Instillation threads and that is a reacurring theme: Do it at HOME when you need it and it will take several to see improvment and several to get the uerethra to stop hurting with the Cath. I also use a very, very tiny french #10 pediatic Catheter. The peds caths are longer so there is more places to grab it with and the mirror I recommended in an earlier thread is great although these days I barely use it.

[bjcov]

You ladies are just awesome! I have 2 more to do at the office, but it sounds like if you do them everyday it works faster. Mine are costing $40 a visit so everyday would be impossible for me. Just wish I would show some improvement before I ask to do them at home. I have an appt with the doc on Friday so we will see what he says. Wish me luck!

[Omaklackey]

Bjcov, is the 40$ because you are doing them in the office? As in they are charging for a nurse visit? Because they just don't come close to costing that at home? I would ask next time because if may also be cheaper (as well as easier) to learn to do them at home?

[L. Thomas]

I hope if you have any doubts about doing home instillations you will read the link in my signature..if that dosen't encourage you to do the procedure I don't know what will.

Just a note in case you read elsewhere, Dr. Dell's office said some people are having problems getting the heparin filled. In 2008 Baxter's heparin was recalled because the factory in China was contaminated. I don't know if that is what has happened again or not.

I couldn't get the heparin in 2008 until the pharmacist was aggressive in finding a manuf. If you are having problems with getting heparin, ask the pharmacist if they can get it from APP rather than Baxter.

I had problems with my prescription yesterday, but not because of a shortage. I have had my prescription filled at the same pharmacy since 2004. There were new techs and a new pharmacist. When Dr.Dell faxed the prescription the pharmacy called and the tech said "We don't fill these prescriptions". I call my insurance and they said I shouldn't have a problem with the prescriptioin because it would run for them. The new tech and pharmacist didn't even try to run the prescription. This could possibly be the problem with some who can't get their prescription filled. Everything was straightened out and I did the heparin today.

If you can't get your prescription filled check with your insurance company to verify heparin is on the drug list. If it is on the list, ask who to contact if the pharmacy won't fill the prescription.

My cost are very low. Heparin and lidocaine are generic and my copay for 90 days is $10, needles are $0.15, syringes are $1.10, catheters $4.00 (Dr. Dell allows catheters to be used 4 times). That is less than $3 per insitll.

[L. Thomas]

The problem filling my prescription was not shortage. The pharmacist was new and didn't even process the prescription. The insurance gave me the phone number for him to call to process the prescription. They filled the prescription the next day. It seems he thought he was going to have to do the instill. :loco:

[Taramc]

Here's what I do to avoid infection:

-Benzalconium Chloride wipes on fingers and around urethra before each instill.
-Using a new intermittent catheter each time, dipped down into a tube of Lidocaine Gel.

Here's what I do to invite infection:

-I throw the cath-tip syringe and the cup I use to mix the instill in a box and boil them weeks later. They get pretty crusty.
-I re-use the syringe/needle to pull the medicine out of the vials. Stupid expensive syringes.

Here's something new I learned from this thread:

-Don't change the recipe.

My pharmacy started distributing the Marcaine in 30cc vials instead of 10cc. So I raised my marcaine from 20cc to 30cc. Nothing happened. I hope my heart can handle it!

[Jan S.]

I have not heard of the wipes you mention. Can I get those in the drug store/pharmacy? I was having so many problems with infections that I now take 1 500mg cipro 3 hours before the instill. I would love to avoid any more cipro than absolutely necessary.

[Taramc]

Those are the wipes doctors have us use before we pee in a cup for them - it decreases the risk of outside bacteria mixing in with any bacteria in the bladder. I just grabbed one from my urologist's office and then ordered a few boxes from the same company that ships my medical supplies. Insurance doesn't cover them, but they're cheap and worth it.

[Suzy61857]

Hi, this is my first post . The current flare I'm having has lasted 8 months. I was able to see Dr. Evans last month, and he recommended, among other things, daily self-catherizations. I have already tried 4 times, and each time I have missed the urethral opening, medicine has squirted everywhere, or it's superpainful, much more than it was in the Doctor's office. If I had a third hand I think I could get it, but since I don't, could you please tell me what I'm doing wrong. I have ended up in tears everytime!

[Suzy61857]

Hi - this is my first post (sure hope I'm not breaking any rules!). I was able to see Dr. Evans at Wake Forest, and he recommended daily self-installations. I have attempted this four times,, and each time has been a failure. I can't find the urethral opening, the medicine runs down my leg, or it's much more painful that in the doctor's office. I seem to need a third hand. How do you catheterize, hold the syringe, and hold the mirror? What am doing wrong?

[Suzy61857]

I apologize for the double post. I didn't think the first one was posted, so I did it again. I'm sorry!

[Taramc]

You are NOT alone.

It took me forever to master the instills. Nobody taught me how.. I was just desperate and insisted on the supplies and a pamphlet during my 2nd urologist visit.

Anyway, I tried so hard the first day that I almost punched a new hole down there. It was so hard to find my urethra! I enlisted my husband to find it, and he was able to after like five minutes. It went on like that for months.

The urethra is really, really close to your vag. It's right in front of it, with a thin wall between the two holes. After a while, I started doing instills while laying down in the bathtub. I would prop up a mirror and then also wish I had three hands.

If you use one hand to spread your 'lips' apart and the other hand to hold the cath, then look down in the mirror, you can get lucky and SEE that tiny hole then aim for it. I did instills 3x/week in the bath tub this way for like 2 years. I missed and instilled into my vag maybe 3 times.

After mastering the location of that stupid urethra, I started being able to do instills while standing up over the toilet. I propped the mirror a few times, then realized I could do them BY FEEL. I set the syringe of medicine on the bathroom counter, clean myself and my fingers with a disinfecting wipe, grab the catheter and lube it, stick it in, then attach the syringe and instill.

This has given me so much more freedom! So hang in there and you WILL catch on to this. Having instills around the house is my first defense against the pain of sudden food flares. Those are what I get the most.

GOOD LUCK!

[Omaklackey]

Hi,
If you go back to the very first page one of the gals gave an excellent description of how to do it. I bought a mirror from Walgreens and posted on this thread what it looks as well. I do mine on the toilet and the mirror I found has a little "foot" that holds it up so I can see. I also had troubles the first three or so times but now its easy but there is some learning involved. If it hurts try backing out ever so slightly and then as you push it back slowly add pressure and "bear down" just a touch and it makes it easier. Some of us have a bit of a kink in the "line" so to speak and its not a straight shot. Mine is like that because I have a cystocele (prolapsed bladder) so I have to get around a little hump. You will get it though! Don't give up as its just the best treatment!

[Jan S.]

I find I do best if I squat over a mirror in the bathtub. I have everything ready to go, I've washed up, my supplies are new, the cath is still in it's container but a small glob of KY so I can easily swipe the cath through just before inserting. One question for you - what size caths are you using? This can make a HUGE difference!!! The first few times the nurse in my uro's office actually gave me male caths and I bled and cried in pain. Then I posted her, got a little smarter and went back and requested 7 French. They are really small and comfortable.

Keep trying and good luck! Hopefully you will find a way that works for you and get some relief.

[Suzy61857]

Ladies thank you so much for your information and encouragement! I will keep trying! I was sent samples of a hy-slip hydrophilic catheter and Dr. Evans ordered the size 10 French catheters. I've tried both, but since I don't know what I'm doing I can't tell the difference - what do you ladies recommend? Last night I did the one thing I said I'd never do - have my husband catherterize me. My husband is a physician, so it was no big deal to him but I am very modest and it was a big deal for me.We've been married 30 years so I guess that's kinda silly. I was just so desperate to get that medicine in, and get my life back as quickly as I can. Having a flare since September is awful, and I really want to be compliant to what the Doctor ordered. Any tips would be appreciated!