How many treatments you do in a day and what do you use?

[KimFi]

I stated out by having treatments every other day and now have gotten to the point of needing to have a treatment everytime I go to the bathroom. I can not go to the bathroom on my own and have been cathing my self for over a year. I am now using like 5-7 treatments a day. Is this safe? I don't know what else to do because the pain is so bad. The doctor's have me using heprin, sterile water, lidocane 4% and, sodium Bi-crob. Can anyone help me as in what you may use that is differnece and where I should go from here I have been very depressed lately because the pain seems to just keep getting worse everday. Any help would be great. Thanks, Kim

[Katrina]

Well I let dixiefireball know about this thread. She is doing something like 3-4 or something instillations a day but that is unusual. The most I have ever done is 2 a week. Mine were lidocaine and Heparin. My biggest worry is infections....are you on a preventative dose of an antibiotic? Not sure I could handle it because my urethra is slightly sensitive to cathing. I sugest you talk to your doctor about the risks because I am sure they are different depending on the medication.

hopefully dixiefireball will have some good answers for you. :grouphug:

[Dixiefireball]

I wouldn't recommand this at all. Even with the research that has been done it only states that three a day is safe, and that is with my mixer which is heparin, marcaine, water. Your mixer is a different from mine.......

Two: Your Dr. did not recommand this to be safe so you don't know what type of damage your doing to your bladder. I do know its hard when you got to go and it want come out you need to get it out so the first thought is to use a cath, but after we use the cath the bladder slaps together because of no urine being in there so then the pain hits. we want to stop the pain we know that the installments help so we think why not??? All medicines has a safety limit. You need to call your Dr. at once tell him what you have been doing. He can help you! If you can't see him today go to the E.R. they will help you, but please don't keep taking these treatments this way!

Another thing what to do when your RX runs out?? when the RX was wrote he was only approved for you to use this X amount of times per day. You want be able to get it filled again until its time. so your hurting yourself this way too.

You have to have these treatment. I know they help hon, but what your doing could be dangerous and the last thing you need is to hurt the bladder lining more then what it already is.

PLEASE I BEG YOU CALL YOUR DR. AT ONCE AND TELL HIM HOW YOU BEEN USING THESE TREATMENT AND YOUR BLADDER IS STOP WORKING FOR YOU!!

You need medical help asap!!!!

Please let me know how your doing. I'm so very worried about you.
sending you hugs and prayers
Rhonda

[Katrina]

What have you tried other than cathing for you in ability to go? TENS? Did your doctor tell you to do this many installtions?
http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.

I also think you should talk to your doctor about feeling depressed. Antidepressants are often a helpful treatment with IC and I know in my book it can help if a medicine treats more than one thing going on in my body!

I hope your doing better!!

[KimFi]

Hi everyone,

In response to your writting I have been seening the doctor they do not know what to do. They have been giving me med's and know that I am using it way to much. They don't know what else to do, I'm getting worried I'm hurting it even more because of everything I read that is why I asked you guys for help. I'm getting really depressed becasue it has been over a year now since I have not been able to go to the bathroom myself. Plus it seems like as weeks go by I use more and more med's. I have tied a tens unit I just don't know where to go from here and what to do.

[Dixiefireball]

KimFi,

Hon can you change Dr's? If this Dr don't know how to help you.....You really need to run not just walk from them.....I'm glad there doing all they can to help you, but the amount of installments your using can be very dangerous even may cause more damage to your bladder, and that is the last thing you need to happen!

I will ask my uro's RN (we are really close) if they have been any new research she may have seen that I've not that states the use of these installments has been approved more for a patient to use, but as of a few year ago it was only approved to be safe for the use of these installments three time a day.......Even then a person must work there way up to three installment a day or it could cause shock to the bladder......
I'm sorry I don't know the link right off hand but you can go the main page on the ICN. www.ic-network.com.....there you should find another link that will take you to IC Dr's that has been listed either by themselfs or there patients that will help icers......
Don't give up there is hope for you!!!!!

I'm no Dr. nor a RN. I can't tell you what is best for you in no way shape or form, but do know as a patient who has done these installments for years there is a cut off limit if you do to many of them it could be dangerous....
There is cut off limit for all medicines.....I'm worried about your safety......

Can you go to the E.R. to receive any type of help from them??

I know you got to pee........Some has reported by waring a foley for a few days to a week it gave there bladder a break after it was taken out they was able to use the restroom again......Others has even went as far to having the interstim put it.......There is a lot dangerous side effects to the stim it has helped some it has did a lot of damage to some so that is something that really needs to be researched a lot of question asked. You can find a thread all about the interstim here on the boards, and these other gal's can give you some links to read up about it.....Your Dr. should be able to give you some information on it too......I know your in need of a lot of help her and we want to be here for you......To show you we care.....We understand what your going threw.....

sending you hugs and prayers please keep us updated on how are...PLZ
Rhonda

[KimFi]

Thank you very much for your help. I am going to the doctor's on Thursday and will let you know after I have a long talk with them. I have been to a lot of different doctor's and I keep getting we are not sure what to do. Between the pain and UTI and kindey infections I'm just lost as what to do anymore. Thanks for all your help I will keep in touch after the doctor's Thursday. Kim

[Katrina]

Kim, thought I would let you know that tonight we are having a speaker on pain treatment regarding IC.....it is the special alert in red at the top of the board for more details....I thought you might be interested since your struggling right now. :grouphug: