I need advice

[SADoss2]

I have been flaring for about 6 weeks now. My gyn has been treating me with imipramine and Ultram for the last 2 weeks. It has helped some but the last few days the pain has started getting worse. His nurse called yesterday and has said that he will not call in any more pain meds. He wants to do a rescue treatment on Thursday and his nurse is supposed to teach me how to cath myself and do these treatments at home 3 days a week. When I first started falring he did one in the office and it did not help at all. As a matter of fact it made the pain worse by that evening. He has now done this twice. When he gave me the pain meds he asked about doing amother rescue and I explained to him what happened before and he said he would not do that again. I am very frustrated. Do I do these treatments knowing how I have reacted to them in the past or are there other treatment options I should suggest. I appreciate any and all input on this matter.

[tigger_gal]

I am not to sure I would do them if they didn't help, but. it also may be a treatment that after the 2nd or 3rd one you start to feel better.. which I hope is true.. Have you been checked to see if you have a bladder infection? feel better soon.
Brat

[ICNDonna]

If you only had one instillation, that doesn't necessarily mean that the treatment won't help if it's continued. As Cindy said, it can take several treatments before you feel any benefit. And I also think it's a good idea to be certain you aren't infected.

Donna

[Romans8:28]

YOu may also want to consider asking him to use preservative free meds. I haven't found anyone else who knew they were available including my doctor so don't let that surprise you! I had then same reaction to my instills, at first they would make me worse then later some better but the after pain was horrible. Since chaning to preservative free meds. I do not have the after pain only the relief! It's awesome. I also do these at home 1-2x a week.
Preservative free lidocaine & sensorcaine are called lidocaine MPF or Sensorcaine MPF
There is also a preservative free heprain by hospria I have NDC # but haven't tried it.
I switched form benzyl alcohol in my kenalog to a pure solu cortef 1mL powder.
Don't know what is in your doctors rescues!
Shelly

[Dixiefireball]

donna is right. Just one treatment isn't enough to say it want help you. I did that in the beginning and wish i hadn't matter of fact the first three i tired at the office i thought was killing me. but i say about a year later i started doing them at home. i started off three times a week then i went to one a day then to three a day up to four a day. My bladder looks so much better since my bladder is use to these treatments I can now take one and it will numb my bladder when i'm flaring it feels so much better.
I do know where not all a like, but its worth giving it a shot to see if you can get to the point that they help you.
also another thing you can try is ask for the non latex cath. they burn me so badly down stairs once i changed it made a real diff.
also ask for some numbing medicine to put on your before you put the cath in. (i don't use this but hear that it has helped others) I use marcaine and heparin mixed with water.
i hope you feel better soon
sending you hugs and prayers
Rhonda

[songbird7]

I also want to put my two cents worth in............Aside from the installations I would think you might want to check out a good pain clinic as well to be evaluated.
You are in my thoughts and prayers, you and everyone here,
Warmly

[Ginny]

I agree with Songbird. Find a pain specialist.

This is a typical response from a Urologist. I don't want to give you any more pain meds. Installations should take care of this. I lost count of the number of installations at 38. It was always their standard answer to the problem.

Ginny

[navemj]

Hello,
I have been on installation treatments for the past year. I hate to say it, but it took a full six months before it helped, but it was worth the wait! Now, when I do them, I can tell they help. I use an 8 french pediatric feeding tube. The treatment insist of heparin, elmiron, lidocaine, and sodium biocarbonate. I first put lidocain on me then apply it to the catheter. This helps with the numbing. It took me awhile to learn how to do it, but now I am a pro. Sometimes they use Bedadine swipes so be careful, you may be allergic to it. I hope this helps and you find relief soon!
Maryann

[Rose Fish]

Hi Maryann - just read your post. You said it took you a full 6 months to feel the effects of your instills. How often did you do them though? Do you do them daily, weekly? Just curious. I am doing them daily and slowly seeing the benefits but it is taking some time.

Thanks, Rose Fish

[mela414]

I had instills that killed and then instills that were actually helpful and relieved pain. I did some research and noticed that when they used the in office meds I was in pain but when I brought my own meds from the pahrmacy to instill they wre actually helpful.
When I called the pharmacy they told me they use preservative free meds. The office taught me how to self cath and it is easier than going to the office and I actually get the cath in easier. I guess I know my urethra!!
find out what they are instilling. If it's a cocktail of sefveral things you might want to ask him to start out with a few things and then add others as you tolerate them. This way you can see what you react to.
So far at home.....I've been adding one at a time. I am up to: sterile water, bicarb, marcaine and solu-cortef. Next will be the heparin which I underwstand can be the problematic one and then gentamycin.
I think the instills will help to clam down your bladder lining with the right cocktail and a little time. Hang in there. ask questions when you see the uro tomorrow. let us know how you are. :)

[Romans8:28]

Mel if you had problems with the regular meds.too. I did find a preservatvie free heparin made by Hospira. If you want the NDC#'s I can find them just PM me! You may not have any problem with adding that one! I haven't tried it yet.., I want to but to many other med cost right now and a possible stone issue to deal with! If you do try it please let me know how it works. If it was easy to order and cost!
Thanks
Shelly

[mela414]

Sheely,

I just called my pharmacy and they said that the heparin is preservative free but has a natural acidifier for the ph and sodium chloride to help the heparin be absorbed. It is made by Baxter.
The gentamycin that I am getting is by Hospira but has methylparaben and prophylparaben. I am afraid to get this one although I think I might havce had it before from them with no problem. Are those ingredients considered preservatives? If so do you know of any company that makes the gentamycin preservative free?
I did an instill this morning and finally got the pain to subside. I used: marcain, bicarb, sterile water, solu-cortef.
thanks for you info............hope you are doing OK!

[Romans8:28]

You must have a good pharmacy because when I went looking for preservatvie free neither my doctor or pharmacy knew about it! The preservative used in heparin is usuallly benzly alcohol. Tha is the big flare one for me. If you get it check the label and if it doesn't contain it PLEASE send me the NDC#. I am getting all the NDC# of preservative free meds to have hand for my doctor. I have not researched the gentamycin since I instill a natural antibiotic daily instead.., methlyparaben is a preservative and is the one used in the regular lidocaine/marcaine that causes me to flare. The other paraben is a preservative also. I don't know of a preservative free one but the way I found the others was to get the list of manufactures from the medicine list in the IC handbook! Then i just called and ask them if they made or knew of a preservative free one! I hope this helps! Glad you got some relief! My instills are a life saver!
Shelly

[mela414]

OK Shelly..now I am a little nervous. The heparin they are sending me is made by Baxter and although the pharamcist said the label reads preservative free.... she then told there is a natural acidifier for the ph and sodium chloride. I'm looking at my notes and i think she said a small amount of bentyl alcohol (maybe she said benzyl). anyway, I didn't react to the last batch of stuff that they gave me and I am hoping that it is the same manufacturer. I told her to check and call me back. she said it would take a lot fo work to back track but would let me know. Now....I think they sent the order out alrady and they didn't call me back!!!!
I told them not to send me the gentamycin as I wanted to fidn one that said preservative free!
How could they put preservative free on the heparin and then say there is a small amount of these other things?
I think someone on line here said that the Heparin they is is By Hospira. I looked them up online but couldn't get much info. I may try to call them tomorrow if I have a free moment. Oddly enough, the info she gave me on the gentamycin is manufactured my Hospira!
OH well...........I'll have to see how I feel about attempting to instill the heparin once I get it!
keep me posted and I will let you know if I learn anything else.

[kadi]

Hi all,
I had trouble with the home instills at first.
I tried to be as logical about it as possible & looked at each individual element of the instills.
First I figured it couldn't be the heparin or the marcaine or the bicarbonate that was the problem b/c I'd had those in DMSO instills & even the DMSO didn't burn as bad as these Lido/Sod.bicarb/Heparin instills. So, that told me the problem was either the Lidocaine or the catheter. I asked for some latex free caths & that was better, but they still burned so then I asked the doctor for Marcaine, instead of Lidocaine.

He was skeptical & told me it would probably be no different, but I asked him to humor me & if it failed, I'd call it quits. The latex-free caths & Marcaine did the trick & except for a UTI I had this week, I've been pain free almost 2 months.

So, I highly recommend looking at each element of an instill if you are having trouble, it may be that a simple modification may turn a "failed" treatment into a "success".

Hoping that your treatments are a success & that your days become much better soon!

[Debgail]

Hi Sa Doss,

I too experienced different reactions with diff instills. I had 2 in the office that didnt hurt that bad to have done but killed my urethra for days. I have also had an instil( my last one in the office) that killed my urethra and gave me absolutely no bladder relief. What I think is, is that as my uro said, my urethra tissue has to toughen up a bit and as for my bladder we just may need to keep tweeking my instil formula til we get it right. No more 16 french caths either for me!! I ordered 12 french and am waiting for them to come in. Also lidocaine jelly is a must!

I just wanted to encourage you keep in there to find what works for you!

Hugs, Debbie




I just wanted to

[mela414]

Thanks kadi,

I'm pretty sure my caths are latex free. What ype of caths do you get? I've hear that some people here get rubber ones that they can clean/boil/ disinfect and re-use.
I'm not sure I want to go through all that trouble but I gotta tell you the $$$$$$$$ is adding up! I get the 10 French cath with the black rubber funnel at the end. It's a nice soft plastic and doesn't hurt at all!
Is there anyway, those caths can be sterilized for re-use???
I'm so afraid of infection that I throw everything away afterwards!

[Romans8:28]

Exactly but Kadi I did the same thing! At first for several months the marcaine was better then the lidocaine but then again I began to react to it too till I got the preservative free.., I did not realize how much better the preservative free meds felt untill I tried an instill with only preservative free meds!! We are all so different.
Mel manufacturers make both preservative free and those with preservatives you have to look at each individual medicine. I think the number for Hospira is 1-800-615-0187
the NDC# numbers they gave me for their presrvative free heparin are#0409-1316-32 or #0409-1316-66 these are only 5,000 unit vials so you need two. I went under ask Jeeves and look up the # for different drug companies!!
When your medicine comes in from the pharmacy just read the label!! That maybe what they are doing, sometimes it's easier for them to just what till they get it and check! If it's not the right thing tell them and send it back! I use the Walmart Speciality Pharmacy, they've been great! But even with all the notes last time they sent me the Solu Cortef 2mL vial that contains preservatives in the top! I called them and again said I CAN'T USE MED WITH PRESERVATIVES. Since they were out of the 1Ml the computer just shipped the other. The corrected it and put a BIG note on my chart!!!!! I wish it was easy but seems like we have to be our own patient advocate!!!
Hnag in there! When you find the right combination for you it is worth all the work!
Just wish I could find the solution to these kidney stones...., :headbang:

Shelly

[mela414]

Thank you shelly! I use the 1 ml bottle of solu-cortef and have not had a problem.
thanks for al the info on the heparin. Let's see what happens when I get the bottle.
I may just try using walgreen's if you are having such good luck with them. I use this pharmacy that has to mail them to me and of course there is always the additional shipping. another local phar could not get me those types of meds. They told me to go to a medical supply store.............hhhhhhhhhhmmmmmmmmmmmm but....if walgreen's could get it for me it might be worth a try!
thanks,
I printed out the info to have on hand when my order comes in.
:)

[Romans8:28]

Sorry not Walgreens.., The Walmart Speciality pharmacy!! it too is mail order but they have bee VERY good to me! The # is 1-877-453-4566. I worked with Dustin, but Debbie, (the boss) or Steve also helped me get started! Dustin called me today! they messed up and ordered the wrong solu cortef depsite all his notes but HE really got on to them and order the right meds. and now they are shipping it to me tomorrow.. (Sat!) I haven't ask them about the heparin but Debbie is the one who does the ordering and they have helped me get my other preservative free meds!!
They are cheaper then I expected too!
Let me know how it goes!!
Shelly

[mela414]

Thanks shelly,
I appreciate all the info. let me know how you do with the meds. I am flaring really bad. It all started with yogurt yesterday and won't let up. I did an instill yesterday but didn't do one today because I am a little sore from it so I'll wait til tomorrow. The thing is we are flying to FL early in the morning. we are going away for a long anniversary weekend. I'm really not up to it but it's not like we are going to a hotel...we'll be stayng at our house there. At least it will be a little less stressful. But there's always the obligation to see people there. I just don't feelI can' keep up this weekend. I just took half an ultracet and packed a few things. It gave me alittle buzz but did nothing for the pain.
OK..sorry about the venting...tomorrow is another day. I'll do the instills there just to calm things down but.....I really think I need to get on the elmiron or something like it that will help the GAG layer to thicken! What I'm doing is just a bandaid I guess. Soemthing really needs to heal the bladder and I haven't been able to tolerate anything yet..........
Diet....doing my best but never thought yogurt would destroy me!!! This too shall pass. :(
sorry........don't want to be a downer.......thanks for the info....will call next week if I don't get anywhere with my pharmay......thanks and be well!

[Romans8:28]

Sorry your flaring ..., no fun! Dannon plain yogurt is the only one I can get away with all the others have things in them that make me flare too!
I am to fly to Fl next month to see my mom & oldest daughter. We used to live there! What part are you flying too???
Hye let me know how you do carry caths, syringes and meds on the plane! I haven't flown in so many years, I just keep picturing the security going through my bags..pulling out my MSM gel, my cath etc. :(!
I sure hope you feel better for your trip!
Shelly