It works so well I lose it...,???

[Romans8:28]

I love this new thread :)
My rescues are working now with the preservative free, but now I am experiencing something I never have before. A few minutes after I instill it, if I get up I lose some or even a lot. I try to stay down but this last the whole time I hold it?
I guess because everything is so numb for which I am thankful. Glad I am doing them all at home!!! :toilet:
Anyone have this problem?

[Nance]

Yes. I have my instills at the Dr.s office, and there are times I can get up form the table and go put my close on (I always wear a pad) and not lose a thing. Then there are "other" times I sit up and begin to lose some, and from the table to the chair where I get dressed, I lose it all. It's sooo embarassing! Fortunately, I'm able to use the drapping cloth to clean up the mess I make. I'm just glad my uro doesn't have carpeted floors! I use a lot of Peridium, so everything is orange. Can you imagine what that would do to a carpet?!!
It's so dissapointing to lose it all. I try and stay on the table as long as possible...I sometimes try for 20 minutes...but most of the time I wait only 5 to 10 minutes.
I have noticed though, when I have a certain nurse that adds air into the catheter, that it seems to stay in better. I also hold onto it better when I'm not in a flare, I've noticed. I have Elmiron instills twice a week which also include lidocaine, marcaine, and Bi-Carb. The amount of Bi-Carb seems to make a BIG DIFFERENCE on whether or not I get a bad reaction, also.
Hope this helps.
Nance (Who's been in a major flare for a week :mad:

[Romans8:28]

Thanks for your response. So do you feel the amount of bicarb effects you? Do you feel it give you the bad reaction of losing it? How much bicarb are you using/
We just started adding bicarb to my instills with my new meds, so I have been wondering if that could be the culprit? Since I do my instills at home, I did find it helps some if I put the catheter just a little farther in, not my favorite thing to do!
Thanks again for your input!

Sorry you are in a major flare! Hope it passes soon! :grouphug:
Shelly

[mela414]

I did a self instill today and I think I put the catheter in too far! It's not about 6 hours after the instill and although I knlw the meds are wearing off I think I might have aggravated it by going in too far and hitting the bladder wall.
I'm not usre what is oging on but I have been in a bad flare for a week with no relief. At first it started by a mild yeast infection flaring it uip....i've done 2 instills with marcaine, sterile water and bicarb...no big help. Today I did one with same plus solu-cortef. At first I though I was better ...but the pain seems to be worse. I've been on diflucan (3 doses this week) and I thought it was helping. I don't know what is going on !!! I just want to make it go away.
How do I fid out if the marcaine or bicarb is preserv free. I think they are as I've used them in the past with no burning! When I did them with heparin and gentamycin I had a lot of burning! Same thing with DMSO...horrible pain!
I'm going for a hydro in 11 days. I hope it brings some relief.
any ideas?

[Romans8:28]

The yeast infection and the dilfucan can be causing you to flare. Diflucan sure helps my yeast but does irritate my IC. You may need to check for infection! Often when i thought I was just in a bad flare it was infection!
Sodium bicarb just is preservative free. Liodocaine or marcien that are preservative free will say on them or be labeled MPF which means methyl paraben free!
Hope you feel better soon!
Shelly

[kadi]

Diflucan also really aggravates the IC for me. Monistat cream too. The burning from that is so bad I forget all about the yeast I took it for.

Hope you find some relief soon.

[mela414]

Thanks Roman and Kadi,

That must be what is going on with me. I think the diflucan may be flaring me up! My bladder feels so tender and sore! I can't even touch my lower belly....it's swollen and hurts! At this point I don't even know what to do. I guess I will have to keep drinking a lot of water. How long did it take for your flares to subside once you stopped the diflucan...............I don't know how much more of this I can take :(

[Romans8:28]

Since at the time I used Dilfucan my IC was in a long lfare, I don't remember how long it took, sorry. Now I use my Silverbiotics to treat yeast infections and it doesn't cause me flare.
If you are still having that much pain, I really wish you would at least get checked for a UTI. I would hate for you to hurt longer then necessary!
Hope you feel better soon! :grouphug:

[mela414]

I am going to call the gyn this morning and have him to an internal. I checked my urine with the strips and it was negative for nitrites ...so ig uess there is no infection. the ph is also good at 6.5. I noticed I still had a little itching and burning. the entire area is so sore and tender ...i can't even stand up straight! anyway....let's see what happens at the dr today. the thing is that even though the see a small amount of yeast ...they dismiss it and in my case even a small amount will cause horrible pain.
How do you treat do your yeast with Silverbiotics? Do you drink it....or use it internally? I have it and drank it in the past when I got sick. it helps to kill viruses too. When I used it about 2 months ago for a sinus infection....I remember flaring with my IC and posted here. someone mentioned the silver may have caused me to flare so I stopped it. I'm not sure anymore because I used a different brand of the silver a few years ago and I think I was OK. I don't think there are any preservatives in there....right?
sorry for all the questions....hope you have a GOOD day. :)

[Romans8:28]

I use Silverbiotics by Biotech labs. Not all silver is the same. This one has never casued me to flare and since it's also a disinfectant, I instill a small amount every day with my MSM to prevent infection. (It can not be instilled with your prescriptions meds though because it can react to the sodium in them.)
I use it vaginally for yeast, using a baby medicine dropper, coated in MSM.
No preservatives!
Hope you get some answers soon from your doctor and are feeling much better!
Shelly

[mela414]

I went to the gyn this afternoon adn told him what was going on. He did an internal and in spite of taking the diflucan I still have a mild yeast infection....(enough though to cause pain). He said the diflucan was probably not enough to knock it out completely. I told him that I couldn't take any creams as they irritate the heck out of me. He thought I should try Nystatin Oral tabs but I told him I got really sick form them in the past. So....he gave me a script for Nytatin Vag Tablets. He also wants me to take Diflucan once a week for the next 3 months just to see if it keeps the yeast in check. He said that some people have a problem with yeast and have to be put on something prophylactically. He also said that having an Immune System that is a little weak allows the yeast to grow.(i tole him about my IGG deficiciency and monthly infusions). At least I feel better knowing that I am not crazy and something WAS going on. Maybe being on something preventative will help me to keep things in check....these yeast infections have been a problem for me for a long time causing soooooo much pain. Probiotics alone haven't helped. maybe this will.
I have to wait til tomorrow to fill this script......I called 5 pharmacies and none of them stock it.They had to special order it. I guess they want you to use over the counter creams. One more night of pain..........and tomorrow night I'll start the Nystatin.
Thanks for all the replies. I might even try the silverbiotics tonight to see if it helps.
Oh.....I had a diflucan in the house so i started on my weekly dose.

[Nance]

Shelly,
Sorry for taking so long to answer. That flare lasted a little longer than usual and now the Fibromyalgia is beginning to kick in. Both at the same time can be a bit much. :rolleyes:
As far as the bicarb is concerned, I seem to do better with a higher dose. I have an appointment for an instill today, so I'll try and find out how much. I know that one nurse uses a little more than the other, and I usually have less a problem with a painful reaction when she does it.
As for the "losing it" after the instill: I've discovered one thing that seems to help, and again, this depends on which nurse I see. Deb will add a bit of air at the end of the instillation. For some reason, when she gives me my instill, I seem to be able to make it all the way home before I even need to pee...and I never lose much, if any, of the instill.
It's so discouraging to go through all the trouble of the instillation and then lose it all in a matter of minutes, when, the longer you hold it, the more help you get from the Elmiron. :headbang:
Nance