New PC says STOP instills!

[jen74]

Hi ladies.
I am now seeing a new Primary care doc, mine went away for maternity leave. Anyhow, this doctor seems really nice. She is all willing to try new things. She wants me to try diflucan for a week to see if it will help any. She said she went to a lecture the other day and some of the doctors there were saying there is a connection between yeast and IC. I am not positive this has anything to do with my IC since I was on the yeast diet awhile back and it did nothing to help me, but who knows. Also, she is all for me getting tested for different bugs like lyme and other odd things that can cause odd things to happen like destruction of the mucous membranes.
Sh is also really happy that the new uro I seen who did my bladder biopsies has me on low dose antibiotic daily to prevent UTI's. I have to admit I do feel better than before. I had this UTI I could not lick since May. She said to STOP doing the instillations. She said it is not good at all and that this is what likely causes me this resistant UTI that wont go away. I have to admit I think she is probably right. I told her how careful we were when doing these instills, we were so sterile about the whole procedure. She said it does not matter how clean you are, that bacteria are so tiny and are all over on us down there. She said anytime you introduce something in there, you are at high risk of infection. I guess that is why sooo many wonen who are in the hospital get UTI's. They say that UTI's are the biggest probelms in hospitals.
The instillations were a lifesaver for me for a while. They were all that helped me. Then I got these infections and it was horrible. Not even the instill would take the pain away. So I have stopped the instills for awhile now. I am on the antibitoic and pray that will keep some of the pain away. Anyhow, anyone else notice they has nasty UTI's after doing instillations. My urogyne is all for instillations, and just sloughs off the whole UTI bit. But it is not him who is in agony with the infections either. My primary care I am now seeing, well she said as a woman herself, she said it is not good to keep introducing a catheter in the bladder like this. She said you are bound to get the UTI's. I even asked a different doctor awhile back at an urgent care about these frequent UTI's and he also said that when you catheterize, you set yourself up for these complicated UTI's.
So anyhow, what are you suppose to do then? I even did the low dose macrodantin before doing the instills and I still got the UTI. Have any of you that do instills gotten UTI's from doing them?
Jen

[sandymarie]

Jen , I used to take the instills, but only in the doctors office and I never left that he did not give me a large strong dose of antibiotics, He said anytime you enter the human body by cath or otherwise that you are prone to get an infection. I know a lot of people do not believe this, but he never does one without it being followed by an antibiotic. Hope you find the answer soon.


JJ:pray::pray:

[wheresemily]

I got a U.T.I. once after an instillation but recent ones did not cause infections and my uro didn't even offer me antibiotics after the treatments. I have however been fighting U.T.I. since May and the infections just keep coming back. I have never had this problem before so the uro is sending me for an ultrasound to see if I am fully emptying my bladder when I urinate. She said if I'm not, that could be causing the infections. As for the yeast connection, that's interesting because for years I struggled with yeast infection and I.C. at the same time. The yeast infections have only stopped because I am no longer sexually active. I always used to think there was a connection between the two.

[amaranthe]

I have struggled with a chronic yeast infection for years. I cant seem to shake it even though I have taken Diflucan many times. The yeast gets better after one dose, but doesnt go away. After 2-3 doses a few days in a row, it goes away, but as soon as I am off the meds, it comes right back. I eat yogurt almost day with live active cultures, but still struggle with this. So, for me at least, I definately wonder if there is a connection.

I also have had freq UTIs when I was doing the instills. I was on Macrobid daily, yet they persisted. I havent done them in a long time now, and havent had a UTI in a long time now. They did help make my bladder feel better for several days though, (until the UTI came.)

I also suffer with horrible fatigue. (It is so bad that without med for it, I often can sleep for 18-20 hrs a day!!!) I have heard there is a connection between yeast and fatigue. I wonder if that is what's causing mine?

I hope the things you and your Dr and doing will help you alot and this will give you the relief you have been seeking.

Kind regards,
Amaranthe

[kadi]

Diflucan flares my IC horribly & my mother's IC started with a dose of Diflucan. Hoping this will work well for you, but just putting the information out there...

I do instillations between 3x a week & once a day (except during my period) & have been doing them for 3 years, which means I've done about 200 instillations since summer 2005. As I am allergic to all oral antibiotics except Macrobid, I do not regularly take any. I only take that antibiotic if I have a clearly positive test for UTI.

I've only had 4 bladder infections in all that time (3 of which occurred within hours after a bout of diarrhea). Now I take 1 antibiotic pill if I have diarrhea & so far that is working well in preventing UTI's.

Again, just putting it out there that instillations do not automatically cause infection, if you use sterile technique...

[jen74]

Wow Wheresemily, you sound just like me. My infection came in May also, and I could not lick it. I am now on low dose keflex daily to keep it away. This UTI really damaged my bladder and made my IC way worse. I am pretty positive that the instillations caused it. I do not have sex, I am VERY clean. especially after I have a BM.
As far as being sterile when doing instillations, believe me, you could not get any more sterile that I was.. I used all new catheters each time, took a shower before hand, used the bedatine antiseptic first before using catheter and I even took a macrodantin half hour before, and YES, I still got the UTI. My primary care said it does not matter how sterile you are, because we are NOT sterile down there and when you introduce anything in the bladder, you risk a infection. She is right. I have to say that I did not get the UTI's right away when I was doing the instillations. But after several months, I was getting them more often, then I got this one that would not go away. The New uro I see said that the bacteria could have colonized there now in the bladder and he even said it is likely due to the cathing. I think the bacteria once they are constantly introduced in the bladder, they know how to find their way back and then they colonize there and cause UTI.
I do not think you are retaining urine. It is likely the cathing that caused the UTI you have. But it is good to make sure in any event. My urogyne said that there are alot of people who never empty the bladder fully and they never get infections. He said it all depends on your immune system. I think for people with IC, since your bladder is already inflammed, any little bacteria that make their way in the bladder will cause a UTI more easily. And when you catheterize, you do introduce bacteria every time. Usually normal people can rid themselves of the bacteria, but maybe it is harder for us.
Jen

[kadi]

Everyone with IC is different, some people are definitely more prone to UTI than others & that is scary.

I'd just hate for a patient to think instillations cause UTIs for everyone & rule out a treatment that could very well give them their life back, as they did for me.

[leelee88]

You are right Kadi I think some people are just more prone to infections.. I know there are a lot of people that do installations that do not have recurrent infections or even get infections. I have been getting them done at the Drs office and have not had any UTIs from them.. But like I said that is just because we are all different..

As far as the yeast connection, I think yeast does play a roll in making my bladder flare. I have had problems with yeast for as long as I can remb..

[jen74]

Kadi , you are right. I guess it all depends on the person. I did use to get UTI's from time to time before I had IC or before I ever did instillations. But I have to say that since doing the instills, I have gotten way more of them and nasty ones that I cant get rid of. The bacteria have also already become reisistant to alot of the antibitoics. This is scary indeed.
It is a bummer since the instills did help me at one point. But the UTI risk is just to high. They say that in hospitals UTI's are the highest when it comes to having hospital induced infections( usually always due to catherization). I do know that it is more probable in a hospital if you have an indwelling catheter, but anytime you introduce a instrument of any kind in there, I guess there is a chance. I am like you, I am not able to take many antibitoics due to side effects or resistance issues now. So I am stuck in a catch 22 it seems. I am afraid to do the instills since I cannot keep getting these UTI's and taking 14 days of antibitoics each time. I will end up in the hospital taking IV drugs and that is bad. You do not want to do that for a UTI, especially if you get them often. I am also afraid fo being on the keflex everyday even in a low dose. I will( the bacteria actually) will likely become reisistant to it as well. Then what will I do??? But again, I have no choice since I cannot lick this UTI. Whenever I stop the antibiotic, the UTI comes back. It is the same old bug. This I am certain was caused by the cathing. It did not happen right away either. LIke I said, I did instills for a few months, almost a year before this happened.
Anyhow, I am glad the instills are working for you. I have no clue what I will do now for pain releif. This sucks.
Oh, it is interesting about the yeast conection. I was talking to my PCP about it. She told me that she went to a conference and that alot of the doctors were saying that they thouht that yeast was a cause of IC in alot of people. They treated these people with yeast medications and some of them got better. Anything is possible I suppsoe.
Jen

[Claredale]

I have only had one vaginal yeast infection and that was prior to having my intersim. I have some friends that get them quite often. Prior to having that infection, I made a comment that I don't know if I have had one or not and they all said, "oh, you will know". When it did hit me, I was totally aware of what they were saying. I have also had only 1 uti in my life which I am grateful was caught before I had any symptoms. I had my monthly urine check at my doctor's office and they said it was clean at first, but when they sent it off, they called me and told me I was in the beginning stages of a UTI, so they gave me antiobiotics, so I never felt what a UTI felt like with the exception of early in the summer, but nothing every showed up on my urine test. I did take the OTC test, which came back positive. I am on Prosed DS, and my doctor said that could mess with the results, so he did call in another antiobiotic. I wouldn't have known it was a possible UTI unless I read someones description of theirs which was the pinching feeling and how had it was to empty. I haven't had retention problems at all since going on the Prosed. Another doctor in my group prescribed Vesicare to me. My doctor was out for the week. Even when I told him that Prosed DS was doing great and any OAB meds shut down my ability to void. When I went back to my normal doctor the next week, he said for me to just ignore the other doctor's advice. I told him I had already thrown it away. Like other posters said, we are all different. I have no idea what caused my IC to start since I never had any type of bladder issues until my symptoms started when I was 23. I am very lucky that a doctor figured was able to figure it out. Of course I had done some searches on the internet and thought my symptoms were very similar to IC. He did the hydro and found out that I had mild to moderate IC.

T

[sully02]

My nurse that gives me the instills has an antibiotic in it. I have never gotten a UTI. Knock on wood:-)) And I do not remember ever getting a UTI.

Things are certainly different now.

Good Luck to all
Sully