I have questions too! Home instills...

[shvlnose]

Hello All,

So I'm actually scheduled to go to the urologist and learn how to do self-cathing on May 17th. They are having a compounding pharmacy mix the meds for me (I'll tackle getting them to let me mix my own at a later point - one thing at a time!).

I'm a little nervous, but hopeful about the results. I seem to have moderate/medium impact IC at this point. I'm in at least slight pain every day, but am still able to work and conduct my life relatively normal manner most days. I've been on Elmiron a year and it helped a little but not a ton, and I recently stopped taking Atarax and Neurontin because my husband and I are trying to conceive. So for help with pain managment while trying to get pregnant, I'm going to give home instills a shot - the urologist is 45 minutes away from my home so going in each week is not really an option. The mix they're going to use will have Lidocaine, Marcaine, a steroid (like triamcinilone or some such), and heparin. I truly am hopeful that this will help with both immediate discomfort and that the heparin and steroid will reduce the inflammation and help heal my bladder. :pray:

I notice from many of the posts that most of you insert the cath and then drain your bladder before instilling the meds. Will it work if you just urinate before putting the the cath? Do you still need to drain the bladder further? Is there a particular time of day that is better - evening, because then pain is low for sleep, or morning because then you can function more fully during your day? Also, hold times? I'm sure the doctor will tell me how long to hold the solution, but what have your experiences been with holding slightly longer/shorter? As we are trying to conceive - before or after sex? :confused:

As you can see, I'm full of questions... Any advice on this process would be appreciated, and I will also discuss all these concerns with the Dr, too.
Thanks guys!
Aly

[Dixiefireball]

i wasn't trying to get preg. when i started using the heparin rescue treatments. I do mine at home.

I will try to answers as many of your question as i can.

I notice from many of the posts that most of you insert the cath and then drain your bladder before instilling the meds. Will it work if you just urinate before putting the the cath?

its best if you pee before the installment because the more you can pee out the less you will have to worry about infection. the more urine you hold in and has to be drained out can increase the chances of a UTI. You may still need a low dose of anti. to take for just in case reason since anything that enters down in the downstairs area can cause us infections. ask the uro to give you a low dose of anti that would be safe in case you do get preg. during this time.


Do you still need to drain the bladder further?
as soon as the cath goes in if there is any ex. urine left in the bladder it will drain then.

Is there a particular time of day that is better - evening, because then pain is low for sleep, or morning because then you can function more fully during your day? i guess that depends on your pain. if you hurt more in the mornings that would be the best time to use it. (IF) you have no pain related to the installments (IF) you do notice pain with the installments you may want to do them in right after work or at night (if) you take something that will help you sleep. really depends on you as a person. your dr can help you decide this also.


Also, hold times?
its only recommanded you hold it for twenty mins, but if its not hurting you in anyway you can hold it as long as you can without causing yourself pain. (your Dr. may want you to hold it for a diff. time limit)

I'm sure the doctor will tell me how long to hold the solution, but what have your experiences been with holding slightly longer/shorter? the more you do the installments you should be able to notice you can hold it for longer amounts of time. it all really depends on you as a person. one thing that may help you have more of a sucess with these installments is to only use the non latex caths. Even if you don't have a latex allegie for some reason they have been more reports saying that latex in that area cause a lot of burning. a child size cath is normally the best to start off with. I started off with ten french and still use that same sizes.

As we are trying to conceive - before or after sex? i'm not sure about this question this is something you will have to talk over with your Dr.

[ICNDonna]

The length of time the instillation is held can depend on what's in the solution. Some need to be emptied in 20 minutes; others can be held an hour. You really should ask your doctor about this.

When I did home instillations, I did mine in the mornings. They were a little uncomfortable and I preferred not to do them at bed time so I could sleep better.

You may have a bit of difficulty the first time or two you are on your own with doing your own instillations, but it doesn't take long to be comfortable with it.

Warm encouraging hugs,
Donna

[Katrina]

going to use will have Lidocaine, Marcaine, a steroid (like triamcinilone or some such), and heparin.
I have never had a steroid in my installtions so I don't know if that will change things so I sugest you discuss that with your doctor. I have done rescue installtions and I will answer for those the best I can.
Will it work if you just urinate before putting the the cath? I normally urinate and then cath...but since I retain there is normally always something still in bladder....you may need to be ready to empty first.

Do you still need to drain the bladder further? Is there a particular time of day that is better - evening, because then pain is low for sleep, or morning because then you can function more fully during your day? Also, hold times? I'm sure the doctor will tell me how long to hold the solution, but what have your experiences been with holding slightly longer/shorter? As we are trying to conceive - before or after sex? I would normally do so shortly before bed.... I was told I could hold as long as I was comfortable but that 15 minutes would be a good area of time. I have sometimes gone hours and when I did that it would get to be too long and I would get slight retention....which is easily fixable if you can cath since it wouldn't last more than that one time.

The doctor last night in his lecture recommended doing so before sex to make sex more tollerable. I haven't tried this yet but plan to lol


Good luck!! :grouphug:

[shvlnose]

Ok. So I'm having a heck of a time trying to get the doctor's desired med mix from my insurance pharmacy. All of the components are covered/available, but the compounding pharmacy covered by my insurance won't do the mix because I'm injecting it into my bladder, thus it needs to be mixed in an asceptic environment. ARRGGG!:headbang:

So... how many of you are doing your own mixing at home and how difficult is it? I have a biology degree that required plenty of lab classes, so I've definitely got the basics of doing lab mixes, but trying to do the asceptic thing at home has me stumped!

The doctor hasn't requested any antibiotics for the mix so I would need to be really careful. I feel like I'm so close to maybe having another pain management/treatment tool at my disposal, but just can't seem to make it happen. Ugh! Can you feel my frustration? :cussing:

I'm just looking for a way to make this instillation thing happen without having to pay out of pocket and wait for reimbursement - don't have $500/month floating around availble to be in insurance limbo.

Let me know if you guys have any ideas. If not... thanks for just letting me vent. I've been on the phone dealing with this ALL day!!!

Aly

[Sarojini]

Mixing at home is easy -- all of the ingredients come in little bottles or ampules, and you just mix the prescribed amount into a sterile container. You may need a script for syringes to draw solutions out of the bottles, but other than that you should be fine on your own. I do it all the time and it's very easy.

[maryla]

Hi All:kiss:

My uro is going to allow me to start the rescue instillations at home, :woohoo: however, he is not quite sure how to get the meds for me, apparently he has never gone this route before:confused: . I informed him I would conduct the research here to see how you all do it and let him know. Does he write a script for each med? or do you get directly from your doctor and how is it billed to your insurance if so?

If you all would be so kind to let me know how it is administered to you all I would be most appreciative.

Thank you all so much:angel:

God Bless

[Dixiefireball]

i also do my mixing at home... its really easy....
ask your Dr. about writeing the RX diff.

good luck
Rhonda

[shvlnose]

Thank you everyone! I can see from just the couple of posts that I may be able to actually swing the mixing part at home - yeah! I'll talk to the Dr about it tomorrow (my appt to learn to do the self cath-ing).

So... now my insurance has freaked me out about something else... Does insurance actually cover the rescue instill meds for any of you? In having trouble locating an appropriate compounding pharmacy, I spoke with an insurance guy... they want the Dr to fax them a bunch of stuff to establish "medical necessity" (which isn't a huge shock) but he said that the the meds must be FDA appoved for use. If it's considered "experimental" they won't cover it at all. So I guess I'm wondering about the components. I remember hearing that DMSO is the only single Rx approved specifically for IC, but I would imagine that the various components of the rescue instill are approved for what they are supposed to do - Lidocaine and Marcaine ARE approved for use as topical anesthetics, triamcinolone IS approved for use to control inflamation...etc... So do they cover the customer combo? What hoops have you had to jump through to get it covered, if they've covered it at all?

As you can probably tell, I'm flipping out a little today. Thanks for all of your help and advice. It has truly been invaluable to have a place to go where people "get it" and are going through the same thing! Thanks!

Aly

[Dixiefireball]

My inc. pays all but the co-pay for the heparin and full price for the marcaine. My uro did write medical ness. on them once so they (INC) wouldn't give me a hard time about getting them filled.

I had no problem what so ever getting mine the frist time...
These medicines are FDA approved.
or at least they are where i live. (South Carolina)
My Drug store had no problem what so ever getting me the medicine i needed for my treatment. My uro wrote them out for me to mix at home so it made it easier for them to get and approved.

hope all goes well hon. PLZ let me know what happens tomorrow about your approval...
Im sending you lots of support, prayers, hugs.
don't worry yourself. Your Dr. and his office will find a way to help you get these medicine you need.
Rhonda

[Kimchi]

I do all my mixing at home too. I get all my vials from the compounding pharm as well as the syringes to do it with. Then I go next door to the home health place to get my catheters, I use a 5 French (really small) as well as the big syringe needed to put the medicine in. You will get the hang of it. You will My hubby does mine, I have never been able to get that tiny cath in myself. hehehe. I uriniate immediately priot to instillation. I do my instills every evening but if I am really flared, I can do them up to 3 times a day. It's a lifesaver for me. I use Lidocaine, Sodium Bicarb and the Elmiron pill (can't take it orally). Oh, get you some KY jelly too. Put it on the tip of the cath before insertion. It really helps. Also, make sure you wash your hands and everything else you come in contact w/ prior to treatment just to be safe. In some cases, I have put my treatment in and fell asleep for several hours. My Dr tells me to hold them as long as I can. But there again, I don't have the steroid aspect of the trmt. I wish you all the best.

[shvlnose]

Hello All,

Just wanted to let everyone know that I just got back from my appointment to learn how to do self cath-ing. It really wasn't too bad! Not totally pleasant or anything, but I'd much rather cath myself at this point than have anyone else do it. Something about being in control of the situation made me much less anxious than when the Dr has done it in the past.

They have me using a non-latex 14 french catheter. The nurse showed me how to line up the mirror, insert the catheter, drain bladder, insert meds, remove cath and hold for 30 minutes. I'm having some mild pelvic burning/urethral discomfort, but it's not near as bad as I was affraid it would be. They also gave me Rxs for all of the various supplies so I can get those ordered.

I still have to figure out what's going on with the insurance but that may take a while longer to sort out. I'm hopeful. I'll keep you guys posted. Thanks again for your advice and experience!
Aly:kiss:

[Romans8:28]

Good luck on your home instills! They are a life saver for me! I get mine through Walmart Speciality Pharmacy. I do have to stay on top of them but they have been good to me and ship my meds. right to the house! I tried it in town, but as the first one here to do it myself found it frustrating and embarrassing to get the meds!

Jen told me about using a magnifying mirror and a headlight! this helps a lot!

I have no insurance but at home my treatments are not bad less the $20 a piece usually a lot less, just depends on your meds! I use all the same you are except the heparin and mine have to be preservative free! My steriod is Solu Cortef, Kenalog is alot higher!
The benefits to me are worth it, and I do them every 4-5 days! Had to go off just for this week for test and the pain level was unbearable..., they sure help me!

Hope they help you too!

Shelly

[dminton]

I boil water and sterilize a bowl or cup by pouring the water into it, so that's my container. Then I draw up the heparin, lidocaine, and marcaine into a 10cc syringe (I got the syringes and needles from the doc's office, and the caths from Astra, the manufacturer), shoot it into the bowl, then draw it up all together into the syringe, then attach the cath, then push the liquid out to displace the air in the cath, then I go urinate, then I lie down with pillows behind my head with a mirror and some unscented baby wipes. I hold apart the labia with my left hand, have the mirror propped against the blankets so I can see, wipe the outside of the urethra with a few wipes, front to back, and do the cath.

Oh, the most important part, I forgot! BEFORE the cath, I squirt lidocaine gel into my urethra which is in another 3 cc syringe (I pour it from the bottle it comes in, into the open end of the syringe with the plunger removed, then reinsert the plunger, being careful to not push it out the other end). I just place the tip of the syringe against the urethral opening and squirt the gel in. It lubricates and numbs. Not all of it goes in, that's okay.

I hold the solution as long as I feel like. The marcaine for me is most important as I get good pain relief (it is longer lasting).

I know that's a lot of info, hope it helps!

[IcyAngel23]

I know self Cath. can seem to be overwhelming at first. I learned by myself to self cath. I just got to know my body from when they would do it in the office that when I tried it at home I did it by feeling. I was never able to use a mirror like some use. I just feel for the knobby hole and then insert the cath. You can void before you do instills but most likely you won't get all the urine out. There is always going to be a bit of urine in there. If you have urine in the bladder it lessens the effectiveness of the treatments. So I was told by Dr. Parsons. I use Lo-fric caths which are easy and are one-time use. You put water into the pouch and it becomes lubricated without using any other product. Some have trouble with the lube used to make the cath slide in easy without pain. The Lo-fric are the best because on matter how inexperienced you are you can't hurt yourself. The prevent you from poking the bladder with the cath or hurting yourself. So they are also good for on the go. I would say do the instills after sex because some get pain after sex. Go to the bathroom after sex and then instill it. The best time I would say is right before you go to bed or when the day winds down. I was able to put my own instills together. I got the glass bottles with the solution in there. I would draw up the amount of each drug into a 20cc needle. I popped of the needle and it fit together with the end of the cath and flushed it into the bladder. You have to pull out the cath really fat right after all the meds are in. If not the cath will empty the meds out. You'll get use to it. I explain it as when your freezer is full and you put something in there and close it really fast to keep everything in there. Same way with the cath. If you use the Lo-firc you don't need the lido gel. If you have a big problem with irritation in the urethra talk to the compounding pharmacy and they can make you suppositories for the urethra made out of the same stuff in your cocktail. It melts with you body heat and is more effective than the lido gel. The gel is all slippery and the suppository melts with the rate your body absorbs it. So it melts slowly to give you the best relief. I read you are using the the regular caths. They are more likely to give you infections. Ask your dr about the Lo-fric caths. They sponsor this site and will give you free samples to try. They just make it easier and more bearable. Hope this helps

[walnut]

I am reading that some of you mix your "cocktail" at home.

Today my psychiatrist appealed to my insurance company for DMSO, hydrocortisone, marcaine and heparin. I had called a hospital pharmacy to compound it for me. The problem is my psychiatrist does not know how to write the prescription for the pharmacist to compound it. I could do it myself if you advise it would be less expensive and/or easier. I planned on trying the following:

Rimso-50 50ml (what I used to take)
Hydrocortisone 100gm (How is this mixed to 5cc normal saline? I used to take 2cc)
Sodium bicarbonate (10-20cc I read %8.4 solution. Or something about an ampule?)
Heparin sulfate 10,000U (I used to take 2.5cc but it seems like it would have to be like 10cc, mixed in sterile water?
Marcaine is 0.5% 10cc separate from the rest. (waht I used to take)

He needs to know how to write it for the pharmacist. Can anyone help us?

My old doctor gave me, no bicarbonate, but in 2005 I had some spasming and instead of adding something like ditropan or an opioid she just stopped them. I had had 6 treatments each in 2000,2001 and 2002 with close to a year of remission each time. I thought it is well worth trying again and adding the sodium bicarbonate to buffer more and taking ditropan or something similar during the first three treatments. I read it is common to flare and get worse until the fourth at which point if the patient does not improve he stops.

I cannot find a doctor to treat me. One who is insisting I do not have I.C. but only overactive bladder. I was diagnosed 10 years ago. I have had two biopsies with distensions by two different doctors and seen Dr Hanno in Philadelphia who also diagnosed I.C. I am very sensitive to spices and many I.C. problem foods, I cannot take most medications as they cause flares and around my period I get extreme pain, all the I.C. problems. She says she does not like to diagnose I.C. She insists I take a huge amount of ditropan and then cath myself all day because it will cause me not to be able to urinate on my own. I think this is ridiculous. Anyway I have been taking 20mg ditropan xl for a couple of weeks and it is not the answer (I was going up to 60 times a day and not sleeping so anything is an improvement). I still need the oxycontin for pain and valium helps more and alkalizing agents all day or things are really much worse. The hesitation is getting very bad

I know it is not great to be doing these instills without a urologist but I have no choice. My psychiatrist has helped me in other situations. He will oversee everything. I am to learn to self cath on June 30th. At which time I will get a script for the catheters and syringes (supposedly for ditropan instill). I read I should get non-latex catheters and it seems like the right size would be 8Fr? I have not checked much about the syringes. I saw one that held 40cc. Does that seem reasonable?

Should I mix this myself or have the pharmacist do it? Is one less costly? . I will find out if my insurance will pay probably Monday or Tuesday.

So this next step after my insurance agrees to pay and I learn to self cath is for my psychiatrist to write the prescription. So please could someone advise me how it is to be written??

[shvlnose]

Hi Walnut!

First off, it sounds like you need to find a new doctor, if at all possible. It's good that the psych is willing to help though. I'm really developing a violent/visceral reaction to the doctors who refuse to see what is right in front of them and treat people properly for IC...:cussing:

I recently started doing instills at home of Heparin, a steriod, and Lidocain/Marcaine mix. So far I'm pleased with the results. I seem to flare a bit for the next 24-36 hours - not bad, just a slight up tick. Then my bladder calms down and I spend the next week relatively pain free. I use a 14 french, non-latex cath (you may need a smaller one based on what your bladder/urethra is happiest with). I get 60cc catheter tip syringes and only end up filling them a little over 1/2 way with solution (about 43ml). The pharmacy mixes mine and sends it in a cough syrup type bottle.

The thing with the cocktail you're requesting though, is the DMSO. I've never had the DMSO, but as I understand it, it can cause a great deal of pain which is why that particular instill is usually done by a doctor. I could be wrong, and I'm sure that other people on the board will be able to add more to the discussion, but that's what I think is going on with DMSO. I think it is painful enough that you typically don't want to do that one by yourself at home.

You could still have some sort of anti-spasmotic/anethetic/heparin cocktail, though. It took me a while to get everything squared away with insurance, but now I'm getting my mix, intilling every week, and it's all going well so far.

As far as writing the script... I would think that the psych could write it similar to the "recipe" you have below, but be sure to include information such as using preservative free preparations and such. Or you could just use the format given on the rescue instilation page
http://www.ic-network.com/handbook/rescueinstillations.html and then have them include instructions on frequency and what not ("instill daily," administer each week," etc...whatever schedule is appropriate for your situation).

I hope some of this helps!:hi:
Aly

[Linaria]

I know self Cath. can seem to be overwhelming at first. I learned by myself to self cath. I just got to know my body from when they would do it in the office that when I tried it at home I did it by feeling. I was never able to use a mirror like some use. I just feel for the knobby hole and then insert the cath. You can void before you do instills but most likely you won't get all the urine out. There is always going to be a bit of urine in there. If you have urine in the bladder it lessens the effectiveness of the treatments. So I was told by Dr. Parsons. I use Lo-fric caths which are easy and are one-time use. You put water into the pouch and it becomes lubricated without using any other product. Some have trouble with the lube used to make the cath slide in easy without pain. The Lo-fric are the best because on matter how inexperienced you are you can't hurt yourself. The prevent you from poking the bladder with the cath or hurting yourself. So they are also good for on the go. I would say do the instills after sex because some get pain after sex. Go to the bathroom after sex and then instill it. The best time I would say is right before you go to bed or when the day winds down. I was able to put my own instills together. I got the glass bottles with the solution in there. I would draw up the amount of each drug into a 20cc needle. I popped of the needle and it fit together with the end of the cath and flushed it into the bladder. You have to pull out the cath really fat right after all the meds are in. If not the cath will empty the meds out. You'll get use to it. I explain it as when your freezer is full and you put something in there and close it really fast to keep everything in there. Same way with the cath. If you use the Lo-firc you don't need the lido gel. If you have a big problem with irritation in the urethra talk to the compounding pharmacy and they can make you suppositories for the urethra made out of the same stuff in your cocktail. It melts with you body heat and is more effective than the lido gel. The gel is all slippery and the suppository melts with the rate your body absorbs it. So it melts slowly to give you the best relief. I read you are using the the regular caths. They are more likely to give you infections. Ask your dr about the Lo-fric caths. They sponsor this site and will give you free samples to try. They just make it easier and more bearable. Hope this helps Can you give me the amounts of the medications that you instil. I cannot see my uro until the 27th July and am in a lot of pain I would like to ask my GP to help me in the meantime but need the information to give him. I have a catheter in all the time now because of the pain when the bladder is full. So I have the bag attached to my leg and empty it as nec. Hope to have the answer soon God Bless from Wendy registered under Linaria.

[Romans8:28]

Mine are 10cc preservative free lidocaine
10cc Sensorcaine preservative free
10cc 8.4% sodium bicarb
100mg solu cortef powder (I add 2 cc of the sodium bicarb to this to dilute it)
I am now also adding
80mg gentamicin (the regular one is 2cc mine is preservative free and 8cc for the same mg. don't know why!)

What works for each of us maybe different!
you may also want to search instills or brews. I ask a long time ago about different peoples combinations and we had lots of posts. There will be others too.
The ICA also lists instill combinations of some of the leading IC doctors!


Hope that helps!
Shelly

[Linaria]

Mine are 10cc preservative free lidocaine
10cc Sensorcaine preservative free
10cc 8.4% sodium bicarb
100mg solu cortef powder (I add 2 cc of the sodium bicarb to this to dilute it)
I am now also adding
80mg gentamicin (the regular one is 2cc mine is preservative free and 8cc for the same mg. don't know why!)

What works for each of us maybe different!
you may also want to search instills or brews. I ask a long time ago about different peoples combinations and we had lots of posts. There will be others too.
The ICA also lists instill combinations of some of the leading IC doctors!


Hope that helps!
Shelly Thank you for all your quick replies, I will try and see the Dr today and see what he can do for me . I have never had such a long spell of pain before. I was taking morphine for it but now I get the sweats and that is terrible. I am going to try the patch and see if that will help. God bless everyone. It is really something this bladder thing it gets to you in the end. many many thanks. Still learning how to operate this programme so please bare with me. I lost two messages in the private section it just wound ntopen and show me who had answered my message.
thanks again Wendy.

[IcyAngel23]

Mine is
heparin 4cc ( 10,000 units per ml)
Lidocaine 4% 4cc
Sodium bi-carb 4cc 8.4%
This is Dr. Parsons cocktail. I see him every 6 months.
You're very lucky to have the cath in all the time. Voiding every 15mins drove me nuts and I lost alot of sleep.Hope this helps. Feel free to PM me if you want

[klassdg]

Under great pressure, my Neuro-Urologist, agreed to allow his nurse
practitioner to teach me how to do instillation at home - I am his 1st
patient to ever be taught.

She used Saline, Sodium Bicarbonate, Ditropan, Heparin 10,000 units,
Genatmicin 80 mg.
I could not talk her into using a Non-Latex catheter, nor a 5 or 10 French.
She used a 14 French, convincing me that the tip on a 14 is easier to use.

She used 10 ml 20 gauge syringes to draw solutions from the Vials into
2 sterile plastic cups.
Interestingly, she used a huge 2 Oz (60 ml) Syringe - taking off the
catheter tip - and attached it to the top of the catheter I had inserted
in my Urethra.

She had me pour the solution from the 2 cups into this "Turkey
Baster" looking thing, down the catheter, into my urethra.

Question - How much Saline do I have to order - does it come
in a Vial, a large bag - like the hospital?
She was very secretive about this - "have the pharmacy call me".

I don't do this = because I have no drug plan so I call around to get
prices. Target does not do these vials- directed me to a home health
pharmacy that carries the vials.

I assume the Sodium Bicarbonate is 8.4% solution and is the 50 ml bottl.
The Heparine she used was 10,000 units.
Is the Heparin expensive??
And is it necessary - Target pharmacist said it is for blood clotting.
I assumed it was for inflammation.

The Ditropan she smashed up in a pill smasher - which I found unnecessary
since frequency is not a bother to me as much as the pain,in a flare-up.

Why does he use Gentamicin in the solution - does everyone use this.
It seems that most people use Lidocaine & Marcaine & Heparin & Bicarb.

I would like to try Marcaine and/or Lidocaine solution (not the gel) for
the horrible pain.

I will look up the various solutions online - I assume every Dr. has his
own special cocktail that he thinks works best.

Thanks,
Diane
Baltimore, Md

[Freckles]

Thank god I found this post. I'm just starting to do this at home and I'm freaking out. My insurance doesn't cover any of it so that really stinks. I will be without health insurance when my divorce is final so I don't know how I will survive then. Thanks for all the good advice. I'm on morphine now, and hopefully these will allow me to get off the pain meds I've been on for 10 years. I know I need them, but I still hate taking them. I hate having to say I'm on morphine. I can't function without it. Please say a prayer for me that these instillations will help me. I was layed off in February due to this disease and I know I can't work full time anymore and that just kills me. I feel so useless. I hate this disease.
Karen

[Freckles]

I'd like to know how much the heparin is as well. The bicarbonate and the lidocaine alone was pretty expensive. If the heparin is expensive I'd like to leave that out. I'm already taking 4 elmiron a day isn't that enough. To be honest the only oral medication that has ever helped me is the pain meds, nerountin, and the elavil. I should probably stop taking everything else. It doesn't help me and I'm just making someone at the drug company rich.
So frustrating.....

[Romans8:28]

Karen,
Hi & good luck with your instills. They are a blessing to me. I still take pains meds but often find I can take a lot less with my instills!! I do not have insurance and get my instill meds from Walmart Speciality Pharmacy. They have at least one other IC patient for sure and send me everything I need to do them. Their prices were the best I found so you might want to check them out.

I know what you mean about admitting the pain meds, people just don't understand and truthfully before this came into my life I never thought I would live on pain medicine either! But at least with the pain meds and instills I can live a life!

Hope this helps you! You can pm if you have any questions about doing your instills. It's not that hard once you get the hang of it!

Shelly