Help! Self Cathing questions!

[ICsmiles]

Hi, I just started self-cathing at home - my uro started me on a mixture from Dr. Parsons. I have not heard of anyone else doing this exact cocktail. It is: 3 cc sterile water, 5 cc 1% lidocaine, 3 cc sodium bicarbonate - and the contents of 1 Elmiron capsule. (I am tempted to use 2 because the Elmiron is so grainy/powdery and doesn't dissolve so much of it sticks to the syringe and doesn't even end up in the bladder)
I have had trouble getting cath supplies that are workable. The 14 Fr straight catheter I received from my pharmacy hurts so much I will not use it again! eek (I am trying to get LoFric pediatric catheters - self-lubricating! they sound great)
Question: I read about lidocaine in/on your urethra before you do the catheter so they are getting me some gel or something - but how do you get it in your urethra?
Question: Would you mind sharing what you use - both as solutions and your cathing supplies?
Question: What is the difference between Elmiron and Heparin in instillations? (my dr. said Elmiron is easier to get, since I already have the prescription, so that is what we are trying.)
Question: Is it a new development to try Elmiron as an instillation? (It seems kind of grainy and it doesn't dissolve, so wouldn't that be kind of rough on the urethra/bladder?)
I have been talking to Brenda (thank you so much) :) and reading everyones's posts here. The info I get here is so much more thorough than my dr. gives me! I am his first IC patient who is trying this, because oral medication hasn't been working. But he and his nurse don't have any answers to my questions - it is new territory - I am grateful he is working with me on it, but I am in a new frontier as far as urology in my area!
Thank you for listening! :D

[liz2]

One of your area health care services can tell you where to get the catheters. I get mine direct shipped from a healthcare wharehouse. If you e-mail me at lwcclark@cox-internet.com, I can answer more of your questions privately.

Or you may send me a private message. Some of this is rather personal for me.

[BrendaS]

Sharon,
Hope you are doing some better with the self-cathing. Michaela and Brianna have both answered questions for me before on instilling elmiron. Hopefully, they are still around and can help you too. Maybe you could ask your uro if you could get you in touch with some other drs that might be doing this? Also, he probably has many patients that self-cath for reasons other than instilling elmiron. Maybe he could get you in touch with some of those patients? For ex., I know my nurse told me that had patients who instilled antibiotics. As for as the elmiron goes, I know that Diane has said she had problems with the texture of the elmiron. Thankfully, it doesn't seem to affect me. Now, I am a little uncomfortable right after the instill & after I pee it out, but it doesn't last very long. I truly hope you get some answers. Instilling elmiron has really, really helped me.

Brenda

[liz2]

Trying Elmiron as part of an instill must be a new development and does not, to my knowledge, have any clinical trials backing it up--certainly Ortho-McNeil has not made this recommenation.

I wonder what the risks and legal ramifications are for medical and lay individuals who recommend doing this. Isn't this going against the company guidelines for use of the drug.

It can be gritty because the filler from the capsule does not disolve. You can tell this if you ever have one break open in your mouth. Some people have said that it feels like sandpaper.

Who would be legally liable if someone heard about doing this and there was a very negative outcome.

[Dixiefireball]

Question: Would you mind sharing what you use - both as solutions and your cathing supplies?

My doctor gives me the ped. cath from the office with the lube jelly i didn't find it hard to use it at all i thought it would be awful the rn told me to use a mirror at first but i found that just got into my way but until your use to it i would try that.


Question: What is the difference between Elmiron and Heparin in instillations? (my dr. said Elmiron is easier to get, since I already have the prescription, so that is what we are trying.)

i'm not sure what the diff is my uro told me the heparin got into your system faster and it helps people that the elimron doesnt help.


Question: Is it a new development to try Elmiron as an instillation? (It seems kind of grainy and it doesn't dissolve, so wouldn't that be kind of rough on the urethra/bladder?)

I think it would but i'm no doctor or rn i only know what my uro and rn tells me to do i wish you luck let us know how you are and how it works. grouphug

[liz2]

Sharon, I answered your private message. Heparin for instills is only a prescription away--should you doctor choose it as your treatment option-- and it is supposed to soothe the bladder and urethra.

[BrendaS]

Is heparin different than DMSO? I didn't tolerate DMSO at all so maybe that is why my uro wanted me to instill elmiron. (????) Brianna, I believe, has done the elmiron instills for 2 years. She also told me that her uro's office has a lot of people doing it b/c it worked so well for her. I asked my uro about any studies on instilling elmiron & he didn't tell me of any. He simply said it made since to do it like this. (Gets it right where it needs to go without the side effects that some experience.) I remember once someone stated their uro had just returned from a conference where instilling elmiron had been discussed. (I cannot recall who posted that.) Anyway, I have read good things about heparin so maybe it could help us even more. Who knows b/c we all respond so differently to treatments!

Brenda

[ICNDonna]

DMSO and heparin are entirely different medications. Heparin is usually painless to instill. I did self instillations of heparin for quite some time and it did help, but not as much as the DMSO so that's what I have now.

There are physicians who are recommending elmiron as an instillation --- it may be some time before results are known. Some feel it helps them a great deal; some find it irritating. As long as you are working with your doctor, I encourage you to do whatever helps you.

Warm healing thoughts,
Donna

[yorkiegirl]

After reading Dianne's post about the problems she had with Elmiron instills, I called my uro's office and asked if they would dilute it with water (and omit the sodium chloride)--the nurse said of course, no problem. (I suspect that the sodium is burning me like crazy, too, since I couldn't tolerate dmso, marcaine, & heparin instills; they made me flare so badly it wasn't worth the effort.) So now I just have to get up the courage and strength to make the 2 1/2 hour drive. I already talked to my pharmacist who said he doesn't have any caths--I will have to get them somewhere else. Do you use the same one over and over or wash one out after each use? Someone mentioned a pediatric feeding tube--do you need a prescription for caths, feeding tubes, etc.? One more issue--the uro nurse told me I have the smallest ureter she's ever seen. I asked if that could be responsible for my ic symptoms; she said no way. Wonder how I'll do with self-cathing. I'm to the point where I will try anything!

[ICsmiles]

Thank you for all your responses! You have no idea how helpful this is! Only other IC patients understand what it takes to take care of our bladders! angel
- 2 urologists in my area told me about using Elmiron instillations - they both attended a seminar in which it was discussed. I was told it came from Dr. Lowell Parsons, the research doctor who worked to develop Elmiron.
I do feel the gritty texture when I take it orally - I have started taking it out of the capsules and just dumping it in my mouth! It hardly has any taste at all, and I swallow it with water - much easier than taking pills for me. It does seem counter-intuitive as an instill, though, but I'm willing to try it. If it doesn't bring relief, I will ask for Heparin. I just wish there was some literature about it other than the few of us who are or have tried it.
Thanks all of you so much. I will let you know when I find out what the solution (pun ) is for me! lmao

[ICsmiles]

I was told to use catheters, syringes and needles one-time only... but I know others wash with really hot water and soap... guess it depends on the supplies you have. Also - I have a stainless steel cup for the mixture that I boil right before use to sterilize it. It is hard keeping everything sterile!
Does anyone use sterile gloves? (I bought some and then found out they said "not sterile" on the packaging - dang it!)

[jen75]

Vinyl powderless gloves that are labeled sterile are available at Walgreens.

:)

[ICsmiles]

Thank you Jen! :p
If you want to know something, ask an IC patient!

[liz2]

I think some people's experiences are the exception and not what happens to most of us. I am extremely allergic; my allergy list is a page long, and I have not been allergic to most of the items mentioned here as problems, i.e. the sodium part of these mixtures. Per chemistry, that sodium molecule that you are referring to works a little differently than the sodium in table salt.

However, I would keep in mind the fact that each person's body is different.

Usually a pharmacy does not stock catheters. Feeding tubes like some of your are discussing are available from vet supply houses. However, I would pursue a health care route. They are usually better in trying to meet total patient needs when you have to have caths and irrigation sized syringes.

If you private message me, I can give you the name and phone number of a health warehouse that will ship all of your cath supplies direct to you. They probably know of and can recommend another supplier closer to you. They also can let you know if an initial prescription is needed; I cannot remember.

If you need syringes for injecting or drawing medication out of bottles, you do need a prescription; these are different from irrigation syringes. I am a diabetic and my injection syringes are available from and filled at a pharmacy.

I personally have not been able to use gloves; I need more more sensitive hands. I wash my hands like a surgeon does. I believe all doctors recommend the use of a sterile solution like Betadine or Hibiclens for cleaning before cathing.

[loriz]

Hi,
wish I could be of more help but all I can say is I get the elmiron instills exactly as you are going to be doing but I get them done at the uro's office by my uro..I do not self cath so I can't really answer your questions but I thought you might like to hear that I am doing really well with the instills and they are helping me a great deal..just wanted to toss a bit of encouragment out to you or anyone that might be starting this type of treatment...best of luck with yours..hope it helps!!!
Lori

[liz2]

The DMSO may be what is causing you to burn. The DMSO cocktail helped my IC even though I burned for a while afterwards. The benefits out weighed the discomfort. That was my own experience; it could be different for you. Your doctor should be the one to help you with health care decisions. He can isolate the ingredients in the DMSO cocktail and help you locate which one is causing your problems.

No, I never reuse catheters without sterilizing them--per doctors orders. Discuss sterilizing techniques with your doctor.

[ICNDonna]

When I was self instilling, my uro's office provided the catheters and the syringes for drawing up the heparin, as well as the syringe for instilling the combination once I mixed it.

I use soft catheters --- I have used the straight ones, but I find the flexible much more comfortable --- it's totally a matter of individual choice. My uro's office nurse also instructed me on how to clean the catheters for re-use.

I do think it's good to share our experiences. If there hadn't been someone on the boards to tell me their first few DMSO treatments were painful, I would not have gone on beyond the first one --- and DMSO has been my savior.

I don't use gloves. What I do is to wash my hands thoroughly with antibacterial soap. I store my catheter supplies in such a fashion that I can unfold the wrapping without touching anything inside. I also lay out a fresh towel to receive the equipment after it's cleaned. I then wash my hands and do the procedure, clean the equipment and put in the fresh towel and fold it around it to cover completely.

Donna

[ICNDonna]

yorkiegirl, I hope using the plain water will work better for you. Be sure to let us know. I have heard of a few other people who are sensitive to sodium chloride --- it's not common, but it can happen.

Warm encouraging hugs,
Donna

[liz2]

I use soft catheters with a wide tipped single end (on the drainage side, not the insertion end)--different from the stiff ones that are used in hospitals and many doctors' offices. I am using a French 14 or 12. I have even dropped down to a French 10, but find it too slow for me--personal preference. The French 8 gives too much and is harder to work with, in my opinion.

These catheters cost $2 each; and the shipment price is $5, so I get enough at one time to make the order worth while. You can file your own insurance paperwork if you get your doctor to write an order for the catheters. Policies differ on how many are covered by insurance.

I chlorox wash the catheters and sterilize before reusing. Check with your doctor on how many times he would recommend your reusing a sterilized product. I never want to take the chance of introducing bacteria that would cause a bladder infection.

[ICsmiles]

Thank you for all your responses. I am still working with my urologist and pharmacy to get comfortable with the solution and supplies.
I will report back when I know what works for me!
thanks IC angels! angel

[liz2]

Is there anything else that I can help with?

[ICsmiles]

Thank you Liz for all your help on this. I am awaiting my dr. and pharmacy to get the dosage. I received No. 10 red rubber catheters, the long ones, which work a lot better for me! 12 might be faster, and now I see why the #8 would be too small.
I found the site of IMS which sells the lydocaine in urojet dispensers and will take a print-out to my pharmacy, since they couldn't find it. I have done so much research on all of this - it really shows that we have to be advocates for our own medical care!
The final piece will be the heparin dosage.
I will let you know what happens.
Thanks everyone!

[ICsmiles]

Donna, I am also going to try your method with keeping the supplies wrapped in a clean towel for the next time. And I've been washing my hands with antibacterial soap like you said, instead of getting gloves, although my pharmacy told me they ordered them already.... well, I have plenty of time to try it both ways!
thank you! :)

[ICsmiles]

Loriz and Brenda - thank you for sharing about your success with Elmiron instills. Please keep us updated with your success. Did it help with pain? That is my main problem, and my urethra hurts so much after Elmiron instills I wonder if it is the grainy-ness of the Elmiron.
Yorkie girl - let us know how it works taking the sodium bicarbonate out of your solution...!

[liz2]

The lidocaine urojets come 20 to a box. Your doctors needs to know that in order to script them.

[skershner3]

I am doing self catherization because I was retaining too much urine. I wash my hands with antibacterial soap, use baby wipes to clean the area, I use Xylocaine Gel to put on the tip of the catheter when I insert it. After the catheterization I put my basin in the sink with my catheter and wash it thoroughly with antibacerial soap on the outside and then squirt some in the inside of the catheter and run water through it. You need to rinse it off good because as you know any soap, etc. can cause irritation. I have a clean towel laid out (per Donna's instruction to lay the basin and catheter on and let it air dry and use the same catheter over again. The Xylocaine Gel is a big help I might add. Hope this helps. Susan

[Brianna]

I have been doing elmiron instills for over 3 years now. I believe I was one of the first in my area. I talked to my uro about doing it since I had side effects from the oral elmiron. She contacted Dr Parsons who had already had patients doing it with GREAT results. It has totally changed my life!! My bladder capacity has increase immensely!!

My dr said you can re-use caths (I don't chance it) but she said wash them with soapy water, rinse and put them in the microwave for one minute to sterilize. I have to use the pediatric caths.

Also, a word of caution about instilling water. I sure hope it is sterile water that you get at the pharmacy. You have to have a pres for it. One time when my ins was not gonna pay for my sodium bicarb I asked my pharmacist about using plain tap water and he said "NO"! He said there are microbes in it that can mess with your bladder and chemisty. He scared me about it and I had my dr write me a pres for sterile water til I got my sodium bicarb.

I know everyone is different but this is the info I was given.
hugs
brianna

[pattig89]

Thanks Lori I am starting the elmiron instills next week and that is good to hear
that you are doing well on them....I hope I am just as fortunate.
Thanks
Patti G.

[icsonja]

I have read all the posts in this thread and it is amazing to me ow different it is from person to person as to what needs a RX and what doent and who uses what etc, but here is my treatment procedures.....
I have been doing elmiron instills for 3 years almost and it has made the MOST difference in my bladder than anything I have done )and if you read my bio Ive done evertything!!My Urologist was trained by Dr.Parsons and they belive as do I that putting the medication right where it needs to go is the best way to treat a bladder since by the time most meds make it to your bladder they are about 85% filtered out.
I use 3 capsules elmiron )which I grind with the back of a spoon till it is powdery, that just takes seconds and keeps the elmiron from clumping or being gritty
then I add 15cc of 2% injectable lidocaine (and I run the bottle under warm water before, that also helps disolve the elmoron and it makes the instill feel better when it is warm)
I used to put in 3cc bicarb, but it burns me post void so now I add 3ccs of sterile plain water (which is a RX in Texas)
I prefer a 8 french catheter with a luear tip (I didnt like the lo-fric brand, too slippery to handle and not reusable)
But I put the cart before the horse, the very first things I do are using sterile cotton pads and betadine I clean around my urethrea and if cotton is irritating or I am sore I put some betadine and warm sterile water in a peri bottle and wash off. Then I use Lidocaine gel on the opening and let it set while I ready my instill, so by the time i have it all mixed well and in the syringe I am numbed up and ready to cath and drain my bladder, as soon as the urine stops draining I put in the instill. A little tip for getting all the elmiron out of the cath is to have a little air in your syringe to push it thru or have a second syringe with about 2 cc of sterile water in ot and wash that thru the cath, but make sure you pinch the end of the cath before you do or you will drain out your treatment and that is really maddening!!
If I am having alot of pain or in a flare, I like to use the peri bottle post instill and rinse with warm water.
Hrer in TX you can go to any medical supply and some pharmacies and buy caths over the counter, you can also get syringes and pull needles too w/o a RX so I guess it depends on what the laws of your state are. But call around to medical supply places and check, I get urine specimine cups there too ans also sterile underpads so if I drop something during a instill it doesnt get contaminated.
The most important part of an instill if you do it yourself is to keep sterile, it is way too easy to get a UTI by getting a little lax in your sterile stuff. I do reuse caths and cups and syringes, I was told to wash them in Dial anti bacterial soap and hot water then let them dry on the sterile pad and put in a clean ziploc bag after. But make sure they are dry or they can grow ickies in them (my daughters medical term)
I kmow it sounds like alot to do, but it really only takes me about ten minutes from step one to clean up and then I get to lay down and enjoy the LACK of feeling my bladder for awhile (you who do rescue instills know what I mean!!).
Anyway the elmiron has healed my hunners up really well, as long as I keep doing thw instills I havent had a major bleed from them.
Hope this helps some of you all and made sense, I am typing with a whopping dose of morphine in me due to back surgery, so excuse the many typos please.
Love to all
Sonja

[L. Thomas]

My insurance will cover suplies (syringe and cath.) if the MD writes an Rx but I have to have the Rx sent to an in-network provider of durable supplies. I use 8fr ped. feeding tube and I have no problems.

I order the needles over the internet, but my durable supply company will sell them to me a their cost. If you look around you can find an internet supplier of needles for a reasonable fee.
________
Hyde Park Residence Pattaya (http://pattayaluxurycondos.com)

[curlycue]

Hi ladies,
I have been self cathing for about 18 months now and It really changed my life, My Uro is Lowell Parson and he put my on 40,000 units of Heparin 8mg of Licaine and 4 of Soudium Barb. I get my Caths throw a company named A-Med they are the Lo-fric caths and they are great self lubricating in 30 seconds. Every month a lady calls me from the company and asks if I need them and how many its great. I have to go to Loma Linda Hospital to get the Medication but it worth it. I do it about 4-5 times a week depending on how bad my bladder is hurting. Good Luck I know it took my about 4 weeks to figure everything out. I had to call 17 pharmacys in my are to get the medication and they still gave me a really hard time, they said they were afraid I would bleed to death, I guess it was the 40,000 untis of heparin in my bladder.