New to this forum - question about continuous UTI w/Ecoli & interstitial cystitis

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Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 8/14/2013 6:02 PM (GMT -7)   
Hi all,

I normally post on the CP forum, but have had some pretty rough issues over the last few months with my bladder and urinary tract. It all started after swimming in the therapy pool. I ended up with "some kind" of infection which kept me out of the water for over a month. After it finally got better, I got back into the pool once and wham, the infection came back.

It just started one night and I ended up going to urgent care because of horrific pain and serious blood in the urine. It was very bad....not a trace kind of thing. They said I had no infection, but probably had kidney stones....but, within a couple of days, I was at the ER, crying in pain and showing tons of white blood cells in the urine (along with the blood again). We did ct and X-ray, but nothing showed. I was given three days of Macrobid and sent home with instructions to see a urologist.

I made the apt, went and was told I had to do some testing. Before it could be scheduled, the infection came back terribly...turns out it is Ecoli. They gave me 10 days of Macrobid, then did the cystoscope and another urodynamic test (I have a failed bladder tack so this is my 3rd). Then I got 2 days of medication. A week later, I got it again....this time it was for 14 days. A week later, I have it again -now- and now I have another 14 days of Macrobid, followed by four weeks of one half dose of Macrobid.

I have multiple allergies to medications and especially to antibiotics.....so, my question is now that I know what it is, do you guys have any recommendations or information on how to get rid of this junk?

I really need help here and apologize for making this so long.

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 6706
   Posted 8/15/2013 2:19 AM (GMT -7)   
Hi RM. I pop in here from time to time to help Bill if I can as this forum gets a lot of traffic without having many consistent regulars. Too bad as there seems to be a great need here.

I suffered kidney stones and infection most of my child bearing years so not totally at a loss in here.

E-coli is a very common bacteria to find in women with kidney infection as it's caused mainly from feces, thus Moms constant instruction to wipe back to front. Thus also making it a common presence in public pools and hot tubs. Young kids and baby's, older adults, anyone possibly with less then excellent hygiene skills. Its a bacteria that resides normally in certain areas and only causes problems when it enters areas it shouldn't and then it can cause you to be one sick puppy!

The IC is however a chronic disorder, miserable at best and at this time incurable. It's more common in women over 40,since you have bladder prolapse I assume from the reference to tacking making you more game for developing it.

There are some things that work for short periods of time and as far as I know only one newer medication approved. Elmiron? Not sure about the spelling. They're are some old tried and true procedures such as a bladder rinse with a drug combination that helps short term.

Some Drs use dietary adjustment to help, the main things to try to avoid are caffeine, citrus, carbonated beverages,chocolate, anything acidic such as vinegar dressings.

Some Drs use meds to relieve anxiety to keep stress levels to a minimum as they believe this contributes to severity of symptoms.

I hope you have a good urologist and one who either is updated on some of the newer treatment options or willing to find out what they are at least.

Certainly sorry to see you've added another chronic to the list. Seems as women, we start falling apart it's a downhill race.

Hopefully you will find periods of remission soon and catch a break.
" Don't give up God gives his hardest battles to his strongest soldiers.

Vickie
Moderator Chronic Pain

Disabled since 1998 on SSD/lumbar spine issues, knee problems.
Chronic pain meds
(Methadone, lyrica,lexapro)

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/16/2013 9:26 PM (GMT -7)   
RM-

Sorry to hear of your continued infection. Something that sticks out to me is only using 1 med for it. I understand your allergy to antibiotics, but wonder if there is another one you aren't allergic to that would help.
when I had a torn esophagus they had to rotate the antibiotics as they seemed to stop working rather quickly.

Vickie- Thanks for helping out. It's good to have a view from more than one person here.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/17/2013 5:42 AM (GMT -7)   
Thank you so much!!!

I agree completely about using only one med and have been virtuallyy begging them to adjust the antibiotics or to even increase the dose until we can kill this darn stuff! The answer has always been that my allergies don't allow it and that two Macrobid is the most you can take.....PERIOD!

I am trying to get a referral to another urologist because I am am sick of driving and I don't agree with their care plan.....but that requires another trip to my PCP (and I honestly get sick every time I go there). I guess I'm just highly susceptible to germs or something, but I always end up with strep and/or some sinus infection......always.

Anyway, I'm going to bite the bullet and try to get in one day next week so I can get the referral. The new urologist has a long waitinglist & I won't be seen until probably October.

When I called the NP back after I realized she had give me overactive bladder meds (yet I don't actually go unless I have taken my Demadex), she said it was fineand to take it anyway. I don't need medication for overactive bladder. I simply need to kill the bacteria and to decide if I have Intersatial cystitis or not.
I
I really appreciate both of you taking the time to reply to my post. It means a lot to me. I needed the support and didn't feel comfortable posting all the CP forum.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/17/2013 7:39 AM (GMT -7)   
RM-

Glad you are taking charge and getting into another doctor. Praying this one will get things straightened out for you.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 8/28/2013 11:12 PM (GMT -7)   
It sounds to me like you need a New PCP as well as a New Urologist, there is no excuse for a Dr.'s Office making you sick and if you don't like the Treatment Plan you have the right to get a 2nd opinion or a new Dr. I am new at this kidney stuff and I'm a little irritated and scared, my PCP was totally focused on "pee in the cup" and when I couldn't after 2 hours and a lg. bottle of water, she sent me home with the cup so I may be taking an antibiotic I don't need. My main issue is the lack of pee, Never had an issue peeing, I drink nothing but coffee and water and I drink 3/4 of a gallon a day. Sorry, I didn't mean to hijack your post, good luck!
Craniotomy/Meningioma 12/02,Bi-P. 04,SMI 06, Glu./Wh./La. Int.,IBS 06, Mig. w/ps.-seiz. 07,Dev.Sep.Sur. 9/07, 2nd Men./Tu. Gam. Kn. Rad.12/08, Rad. Hyst. 09/09, w/Meno, Fibro. 09, Disab. 09, EBV/CFS? 11, Vom., D + C w/Vertigo 12, C-diff, spas. col., Chr. Fat. Mod. 13, Lots of Meds they ch. often + herbal meds + alternative when I can afford it.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/29/2013 8:42 PM (GMT -7)   
Recoveryme2day


Not hijacking, just more information.


Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/30/2013 11:13 PM (GMT -7)   
Never worry about hijacking on my threads.....the more the merrier...

But seriously, I'm sorry that you are having to go through this junk too! I never took the med to keep me from having urge incontinence since I have to take the meds to make me go. I am still waiting and taking antibiotics.......

I need to get in to see my pcp, but it has been a horrible week! I have literally three more weeks of meds at half strength, but I can already tell this is not working. I have had no prolonged relief since it all started! I ended up with a sick daughter (from school) so I got it and have been feeling rough with that too...now hubby has it,

Also, not to post anything to adult, but we have had no adult time in many many months now because of all of this. I don't need suggestions of other personal contact (lol), but I really would like my husband and I to have a even semi-normal relationship and all this bladder pain and leakage is. NOT helping. I'm sure you all understand. It is really starting to set in some depression and other issues,

I so wish they could find the answers so that I could just go back to my chronic pain nightmare and keep this other stuff out of the way,

I guess most of you on this forum know how many of the meds for UTI keep you from taking other meds (mostly supplements and acid meds), but the addition of this and that, with the removal of this and that is causing havoc with my body and my emotions.

Thanks for letting me vent. If anybody else wants to chime in, please feel free!

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/31/2013 7:38 PM (GMT -7)   
R.M.

I understand the anti biotic thing. I hate when you have to take another anti biotic to fend off the effects of the original anti biotic. ugh!

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11
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