Out of curiousity...

[anniepie1976]

Hi, I was wondering for the at home instills how long do you have to hold most of them before urinating? I was wondering because it seems like I am running out of options orally to get better and years ago when I did DMSO and had to hold it, it was agony. The DMSO treatments were very painful for me and I am terrified of doing this again. If I got Heparin or Elmiron intilled in the office how long do they usually have you hold that? I had to do the DMSO for an hour and it is seriously worse pain than being in labor or compares to it anyway. I'm getting so scared nothing is going to work for me. I did so well for many yeaars in remission before getting pregnant! Had 6 months of relief after that too! Now my body doesn't seem to want to heal! Ann

[Katrina]

DMSO was very painful for me ....but rescues were no more of a problem to hold than drinking a lot of water. It varies how long but I think I was told 15 minutes or as long as I could....which turned out to be an hour or so sometimes....(although I wouldn't start out that way).

I wouldn't be as worried about holding the medicine witht he rescue installtions...people do them for pain relief sometimes :grouphug: It is nothing like the pain that leads to later relief that DMSO is.

I sure hope you find a treatment that works for you!!!:grouphug: Good luck

[Dixiefireball]

it really depends on the installment and the Dr. Most uro only ask you to hold them for twenty mins. My uro always told me if it was causing me pain to go ahead and let it out because the rescue installments are to relieve pain not to cause more pain.
At first I did good to hold it twenty mins. (not because of pain because of the fullness feeling i had.) after doing them for a bit I could hold them longer and longer. I started doing them at home. After a short peroid of time my RN showed me research stateing it was safe to do the heparin installment I use up to three times a day. I worked my self up to three times a day with my uro's approval. After i worked my self up to that many a day. I shortly after that went into remission for a glory 18 mths! it was the most wonderful feeling I felt since been dx. back in 2000. After that i started having female problems which lead to UTI after real UTI. for what reason we are still unsure about.
I still have the UTI's but had a short remission with the installments a few months back. Then a really nasty staph infection got into the bladder and kidney's so that was another down fall, but I'm healing from and seem to be doing well. I do hope to see remission again. I'm scared to say i'm pointing in that direction yet, but it is looking promiseing once again.
I do use other meds to control my IC systom but my mixer are doing well together once again. Sadly there no quick fixes to IC each new treatments takes time to see if they will work.
I have seen many on here report they have did well with the heparin installments.
those dmso can be killer on ones bladder, but I've also seen a few that has done well on them too. It really depends on the patient.

Sending you hugs and prayers. I do hope this is your answer. Be open and honest with your Dr. that helps alot the better your Dr. knows you as a person the better they can treat you as a patient.

Rhonda

[kadi]

I held the DMSO cocktail instillations about 20 min. Had those once a week for 6 weeks, then once a month for a year.

I've had better success with heparin/marcaine/sod.bicarb home instills. I hold those for an hour, have them every other day. But, can go up to once a day if flaring...

Good luck! Hope you have equally good or better results:)

[dg2901]

I've had heparin/marcaine instills and can hold them for 2 hours +. I get immediate relief so holding it isnt a problem for me.

Never had DMSO so cannot comment.

Good luck to you.
diana

[anniepie1976]

Rhonda, do you think that maybe your infections you got could have been caused by the catheter? That's something else I'm afraid of. Eveytime I've had a catheter placed I've gotten an infection. I know they say that they give preventative antibiotics but does that work everytime? Ann

[Kimchi]

Looks like you have gotten good advice already. My Dr told me I could hold my installations as long as I wanted. I normally do mine right before bed and just fall asleep. Sometimes it lets me go about 3 hours w/o having to get up and pee. It's nice to get some interupted sleep though by then I am so full, it hurts.