I just made the 2 yr mark, constant UTII's.  Dr would not do the supra pubic, considered incomplete, I know when I have to urinate, can hold my bladder, until recently.  Get antibiotics, 3-4 wks later it comes back.  My husband cath's me because my spasms are so bad.  Argument between Dr's is cathing every 4  hrs is less likely to cause UTI's.  My husband recently placed a Foley cath because my bladder is not behaving which in reality I can drink more to help keep the urine flow constant.  So the answer to your question is yes, and regular Dr's don't understand SCI and HMO's will not let you see a specialist without the referral process.

Thank you Wanda,
My new doctor seems to be busy and the last two times I had to see the nurse practitioner and she made mention of it, but doctor never prescribed it, I will mention it to them if they call me back.  Thanks for the info and drug name.

Hi Wanda,
Thanks for your input as well. I'm almost maxed out on oral antibiotics, and I also have allergies to a bunch of them. I'm now on Levaquin, so we'll see how this goes, as this is the last hope for me on trying to stop the infections. Hopefully, my body will respond well to the baclofen test dose.

Hi Donna,
Hopefully the facility that the doctor is sending me to will accept me.  I have been trying to get the doctors since June to realize the severity of a hemrroid and open sore.  They do not have a clue on what to do.  Went to see a GI dr he wants to do a coloscomy, idiot.  So frustrating!   If I don't get what I need this go around, I will have to change doctors and go thru the whole introduction of SCI.  Sorry don't mean to go on, we are just so frustrated!!
Margy 

Hi Donna, I'm LuLu & also new to this website . I don't have CP. I am quad fx c6&7..since 2006 I started out with a regular foley cath. I had lots of infections & really bad body spasms. I changed to SP tube in 2009 cuz my urethrea disintegrated . I take Zanaflex for spasms ,it helps great but I still have them , The UTI'S ,OMG were horrible before my SP tube & I still have have sediment but not as bad ..I use acetic acid 0.25% to flush every day .I have only had one UTI this year. I hope this info helps you out .peace

Hi Lulu,
My name is Margy, I rcvd a reply that said Hi Donna.  I am sure it was meant for me.  Thank you for your reply.  I am incomplete so they opt not to do the SP tube.  Although my control has weakened.  I wear a foley now because of the loss of control.  It has become very hard for my husband to transfer me every 4 or less hours.  I was on zanaflex which really helped with my spasms.  However it started attacking my liver.  I will be seeing a new physiatrist, so I hope he will have some suggestions.  My last physiatrist got to the point where he had no more thoughts on my spasms.  He was great when I was an inpatient, but out patient not so much. What is acetic and what do you do with it? 
Thanks for the info
Margy

Hey Donna,
I am an intermittant cath user and I am also very susceptible to UTIs.  I have been avoiding antibiotics because I know about the possibility of building up a resistance.  I have found success at drinking Alka-Selzer (something about reducing the acidic nature in the bladder making it a hostile environment for bacteria) has worked well for me.  Also, Rochester Medical makes a Nitrofurizon infused catheter which some studies have shown a 63% reduction in CAUTI on the foleys.  The foleys are silicone so they are less painful to insert since they are very soft.  Might be something to try.

Hey John,
I will have to try that.  So do you just take the normal dose of Alkaseltzer once a day?
Margy

I dont know that I would do it daily.  I would follow the instructions on the box because I know that if you take it daily, you could end up with an ulcer.  I am usually better within a day or so.  Please note, if you are on blood thinners, Alka Seltzer contains aspirin so you could just mix a 1/2 teaspoon of baking soda with water and it has the same effect (it tastes like hell, but it works).

Thanks for the info John.

Hi Donna;
You should try D-mannose it works for me and many that I know. If you do get the powder form its the best way, one spoonful a day flushes bacteria out of your bladder.

i am c3 incomplete quad for over 3 yrs.  the only uti i had was when i left the hospital in 'o8.  i credit this to my daily dosage of cranberry pills (triple strength) three times a day after meals, and a 4oz glass of cranberry juice along with the pills.  my urologist says this does not kill the bacteria, it makes the bladder too slippery for the bacteria to hold on and they flush out easily.  caution must be taken whenever you get a urine analsis.  the test will come back positve for uti.  do not take the antibiotic unless you have smptoms of uti.

Here is a video I came across that I thought would be helpful.

http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.5848659/k.5E06/Reeve_Foundation_Videos.htm?bcpid=87913074001&bckey=AQ~~,AAAAAEJB7yw~,UEwM3sd9SA7frQnm32K7tVHSkEa3p2F9&bclid=1527680651&bctid=1515771923

I would get them here and there and sometimes 3 in a row.  But I bought some cran capsules and take just one a dayand I think I got one in over 2 years.  Which is pretty good for a messy guy like me.  I just keep taking them even if i kknow I don't have one.  Can't hurt.

Those catheters are Great! I myself have SP and change it twice a mounth and use those catheters did the impossable!!

you might have stone's in your bladder.....ask you dr to scope you...thats when the bartender comes out, another margaritta please.....

Actually, I believe I've gotten rid of the infection. My urologist prescribed Levaquin to treat the infection, then a lower dosage to use as a "maintenence" medicine. So far, it's working. I'm scheduled for the 'screening test' for the ITB on Oct. 6th. I've completed the pre-op requirements, and I go on Monday to my PCP for medical clearance. Plus, I've also stopped switching leg bags to night bag, as the Drs. felt it might be contributing to the infections. It's SO nice to not have an infection for once! Thanks to all of you who've replied - I do appreciate it. I hope you can all find answers to the questions you need so that we're all feeling better. Sometimes it's comforting just to know that you aren't "alone" going thorugh all these things. Our circumstances might not be the same, but emotionally and physically, most times, they are similar enough. Feel better soon, OK? Thanks again, everyone!

Dear Donna, could you please tell me the name of bacteria was troubling you, is it E-coli, and is Levaquin effective against this bacteria, what is the regular dose and lower dosage of Livaquin? sorry, I have asked you too many questions, I am helpless, this UTI is troubling me for last 14 years, it does not leave me at all.
Thanks - Nazrul.    

I asked my friend/co-worker Bill and this is what he said.

"Dear Donna, my name is Bill Fullerton and I work for 180 Medical, a urologic supply company headquartered in Oklahoma City. I am a C-5/6 quadriplegic and I intermittent catheterize myself four times a day. I have been reading the replies you have gotten regarding your condition and it sounds like a lot of people have some very good suggestions for you. I have spoken with some of our customers who are experiencing similar situations such as yours. Many of them do take a low dosage antibiotic on a daily basis and it does seem to help them out. I would think that they would become resistant to this but evidently they don't. I also believe that cranberry juice and cranberry pills can help in preventing UTIs.  As far as the pain goes when changing out your catheter if I remember correctly it seems like a customer said that he used some type of a lubricant that had a numbing agent in it to help reduce the trauma. I have no idea what it was, but I just remember him mentioning this. I also suffer from severe spasticity. I am currently taking Baclofen orally. I am taking more than recommended, but so far my kidneys are looking okay. I also take small dosages of Valium to help. I know people that have had the Baclofen pump implanted and it made all the difference in the world for them. Sorry for the long reply."

I hope that helps, if you want to get in touch with Bill you can reply to me and I will make sure he gets your reply and gets back to you.
Rob


"

Rob is right.

Cranberry juice extract has been shown to reduce UTIs substantially. Cranberry extract - twice a day.   I just did a scan of PubMed to see what else I could find and two other things that I saw mentioned were silver tipped catheters.. (silver is antimicrobial) and keeping warm all the time.

Here is the first search I ran.. this is a good start..

http://www.ncbi.nlm.nih.gov/pubmed?term=cranberry+urinary

I get my cranberry juice etract at Costco - trunature brand.. (Its important to always drink it with a full glass of water or you are wasting it)

There are a great many natural substances that I suspect plants evolved to protect them from pathogens - Cranberry is one of them.

Humans used to get them at much higher quantities in our diets, as most of our time here on Earth has been spent as hunter-gatherers..

But, we no longer do.

Hi Nazrul, please forgive me for not replying sooner. I've had e-coli, and numerous other bacteria; and also had two infections (both different bacteria) at the same time. My Dr. put me on 500 mg day of levaquin (at the time I had my last infection), then levaquin maintenance of 250 mg a day. This is the only thing (other than fortaz via IV) that has kept me infection free! I go to NYC tomorrow to have a repeat trial of the intrathecal baclofen, if it works, I'll then have the surgery next week, then be transferred to rehab for a while so the pump dosages can be regulated and I have physical therapy. I also take two cranberry fruit capsules a day.
I hope that you can find some relief, I feel badly that you have been sick for so long. I hope this helps, and that you can find an answer soon!

Hi Bill and Rob, so sorry for the late reply. Things have been kinda like a roller-coaster for me. But I am infection-free, and so thrilled to be able to say that. I've tried almost everything before a cath change, no pain meds worked, nor did oral valium; the lidocaine helped a little, but not enough. A huge thing that does help the bladder/urethral pain is a 10 mg valium suppository I can insert vaginally (it is a special compounded medicine). My spasticity is so severe, I'm a very high fall risk, my muscles are so tight and it's really hard to walk. I'm repeating the screening trial tomorrow. I told the Dr. it's "like I got a new body". I was pain-free for the first time in two years. Nothing hurt, absolutely nothing; including my bladder. In fact, the therapist took the line out of the stabilization (stat lock) he was moving my legs & arms like "gumby", my Mom said. The cath line was moving everywhere, with no pain. The effects lingered for a few days, and I actually starting voiding on my own - which makes me hopeful that maybe I won't need the SP tube at some point. Thank you very much for taking the time to write, and again, I apologize for not doing it sooner. Hopefully something I've said can help someone else with their situation.

Dear Donna,

Thanks for your reply and helpful suggestion, I have already started to take cranberry juice, it's helping me, I feel better now.
I hope you will have a good treatment in NYC.
Good luck and have a nice day, Nazrul.