What everyone should know about e.coli

[MrsMack1985]

I just found this AMAZING article and had to share it. For the record I am in total remission now, and I was finally able to heal once I started treating my IC like the long term, low grade UTI it always was.

I do no think that all cases of IC are cased by bacterial infection...but I think many of them are...this article talks about how certain bacteria, namely e.coli :evilsmile can hide within the bladder, and persist for long periods of time. This is something to be aware of...it is hard to get doctors to listen to sometimes, but worth considering if this turns out to be your problem, as it was mine.

http://www.prostatitis.org/immunebladder.html

I am posting this here because I owe a lot to this community, if it were not for the personal stories, info, help, and support I found here, I would never have found my way back to health. I hope this helps someone...

any questions PM me...

[kadi]

This is interesting, did you have positive tests for infection?
Most of us are diagnosed with IC because we have symptoms of infection, but no infection found in our urine immediately or in multi-day cultures.

[ICNDonna]

I'm like Kadi --- no infection --- even with biopsies that were taken.

Donna

[sassiegyrl]

thank you for posting this. I was in remission for over 2 years and my IC hit me with a vengence last month. I remember that I have always had bladder problems but it was not really bad until I had bladder infections repeatedly. I was also told there was E-coli in my urine/bladder. Ever since then it has been a nightmare. I am currently taking D-mannose, bio-mass and sel-plex for supplements and following the diet.

April

[MrsMack1985]

I have had about 5 positive cultures for e.coli, and about 20-25 infections total. I ran into problems because all the postive cultures I had were proir to seeing the uro that dx`d me with IC.

He was hard-headed enough to argue me down that I was not really getting infections, but he would not send my urine to be cultured. The result of that situation was that I came into his office one week after a cysto/hydro in horrible pain, I asked him it could be from a UTI and he said no, not possible. He would not even do the dipstick test in the office, instead he did an elmiron instill, they had to cath me like 3 times...it was horrible. I ended up in the ER at 4AM the next day delirious with pain, but begging them not to cath me again unless they knocked me out. With extreme difficulty I was able to pee for them, and ... STRANGELY...it turned out I had an infection.
The culture from that turned out to be highly positive for a bactrim/cipro resistant strain of e.coli.

[sassiegyrl]

Our stories sound familiar.

I do not remember how many infections that I have had over the years but I do remember that I had infection after infection and with e-coli. They never told me if it was resistant or not. I saw a uro and she found nothing. She started saying that it was all in my head. I started talking to my ob/gyn, since I had other issues, and he suggested to do the cysto/hydro. I drug my feet for a long time before I would let him look. I had to be sedated and was not out long. He has helped me alot. When I first started with heparin instills the caths were so huge and since then they use smaller ones. They had to give me lots of pain meds and I had to have my husband drive me home. The instills worked for me but with my insurance they do not pay as much for these now. So I am starting a new therapy with supplements.

My good friend and her mother have told me about D-monnose,
Bio-mass and Sel-plex supplements. So I thought that I would give them a try. I have been taking Bio-mass and Sel-plex for about 9 months now. However, I just started D-monnose 2 days ago. I see that you take something that heals your bladder too. I am going to look into that one.

April

[VickiB]

He was hard-headed enough to argue me down that I was not really getting infections, but he would not send my urine to be cultured. The result of that situation was that I came into his office one week after a cysto/hydro in horrible pain, I asked him it could be from a UTI and he said no, not possible. He would not even do the dipstick test in the office, instead he did an elmiron instill, they had to cath me like 3 times...it was horrible. I ended up in the ER at 4AM the next day delirious with pain, but begging them not to cath me again unless they knocked me out. With extreme difficulty I was able to pee for them, and ... STRANGELY...it turned out I had an infection.
The culture from that turned out to be highly positive for a bactrim/cipro resistant strain of e.coli.
What a terrible experience! I sure hope you are no longer seeing this guy!

I found the article you linked to interesting as well. I have no idea what is behind my IC. Like others have mentioned I seem to have no bacteria in my urine when checked either. But if it's "hiding" so to speak, I can see where a clean test result could then occur.

I do believe one day that ah-ha moment will happen and the medical community will un-ravel what's going on when one has IC. To be honest, I tend to suspect we are all not dealing with exactly the same thing with our IC. But, if this Dr Baorto and his colleagues are on to something that will help in any way with the un-raveling, I'm all for it!

I've been around long enough to hear things which are not what they at first seem, or never play out. I'm going to have to take the wait and see approach on this for now.

Vicki

[MrsMack1985]

To April and Vicki,

D-mannose is wonderful...I don`t know what I would do without it. (I guess suffer.)
You may want to take a larger quantity of it for the first few days,..to help get rid of the actual infection. When I feel that I have an active infection brewing i take 1tsp every 3-4 hours. Also, I found that taking a dose before bed and during the night if you get up to pee really helps. Think of it as...flypaper...for your bladder...lol!

I really hope you find relief from supplements...:) They have saved me soooo much pain.

I agree about an ah-ha moment in the future for sure...in many ways, I feel that the surface is just being scratched on this right now. And I do think we are dealing with different causes also... here is a good reason, I know that diet makes a big difference for a lot of people, but it has never made one for me. The only issue I have ever had with a particular food or drink has been iced tea. (I really don`t get that!! How strange, right?) So...yes I do think there are different causes for IC.

I just noticed also that the study the article is talking about was done in like 1997....if they found this out so long ago, I wonder why none of my doctors have seemed to know this about e.coli...? That seems kind of bad.

Oh...and no, I am no longer seeing my uro. I think he was afraid I was going to sue him or something because after all that happened he called me on a Sunday and talked to me for like 30mins about why he did what he did, and he said he wanted to make sure that I didn`t have a "problem" with him. (I kinda do...but, I`m not gonna go back to him again just to settle it :evilsmile)

Btw, I keep hearing that most people were sedated for the cysto/hydro...?!? I wish i had been!! What a nightmare that was!!!:cussing:

This site has just been sooooo great for support and info though...I truly don`t know what I would have done without it. I love everybody on here!!!

Wishing everyone the best,
~Jenny

[sassiegyrl]

So far it has helped me and I just started taking it on saturday! I think that I will always take this. Thank you.

[MrsMack1985]

I am so thrilled to hear that!!!! YAY!!! Sorry, I haven`t logged on in awhile. I hope it continues to help you as much as it has helped me :)

[sassiegyrl]

Thank you for your reply. I love the D-manoose. About the same time that you posted this my good friend also mentioned it. It helped her too. She has not been diagnosed with IC but it still helps her. I still need to get some other supplements but I will alway have D-manoose.

One day there will be the "aha" moment in the medical community.

April