Don't know what to do

[Sandra]

This post is about UTI/bladder infection. I started having trouble last Christmas with my stomach and Gi tract, bowel and bladder. i felt full all the time even with only a few bites here and there. It felt like everything just stopped working. I ended up with a low TSH and a UTI. There is blood, leuocytes and white blood cells what ever that all means...infection i think. So i was put on antibiotic after some tests etc it was concluded that I was haveing motility issues due to the sjs dryness. Since then I have had 7 UTI's. I am at wits end. My GP is not really doing anything. I went to the ER with one on June 14 and was told call your gp have him retest in 2 weeks and perhaps a referal is in order re kidney stones? I did call but my gp felt there was no indication of stones and i never got an appointment. Then a week later I started getting real sick from the antibiotic my stomach couldn't handle it so I had to stop taking it but my bladder did feel better. So I called his office again and said i had to stop the antibiotic I was told he would get the message. He never called back period. I am sick of begging for help so I left it as i had an app for July 4 anyway I would wait and talk to him then. Then June 25 I get a call left on my answering machine saying my appointment was cancelled. Not just me but my hubby's who waited months for a physical and my mom a kidney cancer patient too! My app was changed to July 30. Great! Well today like clockwork i got the infection back again spent 3 hour in the ER and got a different antibiotic. I begged the ER dr to make the referal to the urologist himslef but he refused and said my gp had to do it.
I tell you I am so fed up with this........I did see a neuro on Thursday re some tingling, pain and the motility problem and was told that indeed sjs causes nervous system problems. Specifiacally from the initial visit he talked of sensory and autonomic neuropathy more tests are pending.
Do you thin that the autonomic neuropathy could be the culpret for the bladder issues? Anybody else have this problem?
Could my bladder just not be working right? What can I do? I am so fed up with being told how to pee and toilet myself geez I've been doing it for 46 years without a problem! And drink more water/fluids, cranberry juice....hello i have sjs I dink like camel now! it really stinks! I am tired enough as it is do i have to battle an neverending infection issue too. No there is no way to get a new gp there just arent enough and the rules are if you have one you can't even go on the waiting list to get one. My hubby says on the way home from the hospital that you guys and this site are the best care I have. Your help so appreciated. Sandra

[Scottietottie]

Hi Sandra

Is there any chance of you getting a new GP? The one you have really doesn't seem to be doing his job right. Sometimes when people get UTI after UTI they get put on a low level antibiotic for several months to try to stabilise the situation. Also, there are a lot of antibiotics out there, so they should be able to find one that doesn't make you too sick.

I don't understand why, with so many UTIs, you haven't been referred to a urologist. Autonomic neuropathy can make your bladder play up but you need a doc to give you that diagnoses.

Take care - Scottie

[Pooh]

Sandra,
I have a question for you.  Have you changed your drinking habits lately?  Are drinking anything new that you haven't had before?  What about your home water, is it public water or well water?  The reason I ask is, I discovered on my own that my main source for my bladder infections, and believe me they were every other week, was my well water.  Once I got my last infection cleared up.  I was put on Cipro for 2 weeks.  I went to bottled water and I've only had one slight infection since.  I don't drink any type of soda or anything with caffiene in it. 

I did see a urologist who told me I may not be emptying my bladder all the way because of weak muscles in my bladder wall.  He prescribed a medication called Sanctura to help with this.  I wish you could get a referral, but until then think about what I ask. 

Try to think of something you changed before these infections started.  Be your own detective.  Your doctor sounds like he is either over booked, can't be bothered or just plain doesn't know. 

Let me know if you discover anything, we all have to be our own advocates.  It's a shame it costs us so much money for some of these doctors that don't help us. 

Pooh

[Sandra]

Funny you should ask Pooh as i am so fed up i have already started thinking out of the box too. We do live in the country on a well and I mentioned this to my hubby and he just sort of laughed. We do have a purification system hooked up with the water. Also my hubby hasn't been sick. i pretty much drink water and lactose free milk and a little coffee or tea. Eat lots of mellon as it is nice and moist and also cools my mouth down when it's acting up. Sometimes i crave salt, or vinegar (pickles) and sometimes choclate. Those are the only things at all out of the ordinary and only because i crave tehm for a bit and then am not interested after i've had some. My bubble bath and soap are the same. i think it's the autonomic thing as it's the only other thing new since Christmas as well.
I see  my rhuemy Aug 6, she has been great getting me into the specialists and as ordered a CT of my chest, abdo and pelvis for Aug 12. She does know about Christmas to April as i saw her but i have had 4 UTI's since she doesn't know about. My dr and the whole problem is getting me down and so i have just decided to accept this for what it is, a UTI, take the antibiotic and hope i get a reprieve until i can see my rhuemy. There is not other answer.
The dr thing is so bad, i don't even think out government is telling it like it is for fear of panic. The ER today was as desperate place. Everything from serious car wrecks with multiple victums to broken ankles and lawn mower lacerations and one can never forget the dear old souls that are simply trying to get along with tired bodies. Our ER has about 15 seats in a 20x20 area and people spilled out into the entrance. No beds in the hospital so admittances were in beds in the ER making it a slow go for new problems arriving. A four to six hour wait is the norm and people get terrible fed up as they have lives to lead, children and pets etc to worry about at home. I felt terrible for the ER dr he looked exhausted and overwhelmed he came from 3 hours away. I am so glad i stuck it out and have my macrobid started and don't have to go back tomorrow. I really don't know what's happened to our gp, i hope he is OK, last year at this time he went out for a few weeks on stress leave. Oh well, i'll just keep on keepin on, life is good and i think us sjogies are some of the toughest people out there. thanks Sandra

[lynnmarie219]

Hi Sandra,

I can defiantly relate to what you are going through as I went through this just recently. At first they thought my neuropathy may be affecting my bladder which is possible.....we also scanned my bladder and knew I was retaining urine even after I went to the bathroom. I was prescribed medicine but it made no difference. I was still getting the UTI's. It makes sense if you have urine in your bladder that you can't release you would tend to get more infections but the medicine didn't help me.

I went through more tests.....etc etc... and my neuro and rheumy both consulted with the urologist and now I take a low dose of antibiotic for 6 months. I guess what what happening was that my body would fight off the infection......but not completely (due to the sjogrens..thank you very much  ) and then it would come back.....but not as strong as a full blown infection...but the symptoms drove me crazy anyway. So far....no UTI symptoms and I have only been taking the antibiotic for less than 2 months.....its heaven!

I hope you can get in to see a urologist soon so you can be tested and treated for whatever your problem is at this time. Good luck and please let us know how you are doing!   

[salsen]

Sandra autonomic neuropathy can cause bladder issues but also not being able to empty the bladder can cause infections.  I am being treated for OAB which the doctors tell me can be either the AN or just be a stand alone condition.  Either way the treatment is the same.  Like Pooh I am on Sanctura xr and it seems to be helping. My sister is the opposite and has problems emptying her bladder and she does have to watch for infections.  Prolong problems with this can cause permanent damage, as in her case.  Getting proper treatment is important to find the underlining cause of repeated infections.  I am not real sure why your doctor does not see a red flag and immediately refer you to a urologist.  Apparently he thinks he knows more!

I am not sure where you are located that it is so difficult to request a new gp for you.  You would think they would want someone to treat you that will get to the root of the problem and save on the cost of so many ER visits.  Who handles your doctors billing?  Is this a health insurance plan or is this under a government program.  Sad to say but maybe if you called someone and asked for help in obtaining a new doctor the cost will talk for you.  Not being properly treated only will cost them more.  If they won't think of the cost on you (physically) maybe they will respond when it comes their pocket. 

Good Luck!

[Lacey1981]

 when you say bubble bath you mean bubble you put in a bathtub. that may be your culprit. I used to take baths and bubble baths for years w/ no problem then suddenly I couldn't. I can't even take a plain bath w/o bubble anymore cuz I will get a UTI. Just something to think about. Sorry to hear about all your dr. troubles. Hope you can get in to see your dr. soone and that you can get him to listen this time.

[Katybarstool]

Sandra

Can I ask if you swim in a chlorinated pool?  A few years ago I had many bladder/kidney infections and was red raw in my genital area. I had lots of tests - even ones for std's, but it was only when I was too debilitated to go for my weekly swim, that the whole mess cleared up. When  I felt stronger, I started swimming again. Eurekaa! the whole darn mess started again.  Needless to say, I no longer swim, except in the sea.

Just a thought.

Kathyx

[Sandra]

Salsan, i know it seems just to rediculous  to be true about the dr thing I wish it weren't. i', in Southern Ontario and I too think about the unbeleivable cost poor healthcare is costing. It seems i am at the er all the time! I have thought aobut making a little noise but I fear being black listed. you see if and when i could get a chance at a new dr here they now kind of tend to inerview a patienr before accepting them. i have enough going on to scae a dr away with my health alone and to add being a sqeekey wheel would about finish my chances I think. Thanks Sandra

[Pooh]

Sandra,
We too have a water purification system.  My hubby thought I was nuts too and took one of my water jugs (l gal.) from the store when it was empty and filled it with water from our system.  He then put it in the refrigerator in place of the good jug.  After drinking this water for 3 or 4 days I started passing blood in my urine.  Then the pain started.  He was stunned to say the least. (I found this out when he went to the doctor with me.  He told the doctor what he had done.)

With autoimmune disease our bodies do not process things like normal people do.  I won't drink our water no matter how thirsty I am.  I won't even rinse my mouth with it.  It doesn't bother him or my daughter, but it acts like poison to my system.

Hugs, Pooh

[Skylar]

It's clear that you need a more aggressive investigation and treatment for recurrent UTI and it's so sad to read that you can't get it. I do hope the rheumy will be able to refer you to a urologist, and quickly. Can you self-refer without your PCP?

My bubble bath and soap are the same.

I did pick up on one thing you mentioned about taking bubble baths - they are a big no no for someone suffering UTIs - they can be irritating and be the partial cause of recurrent UTI's. The detergents, foaming ingredients (to make the bubbles) and fragrances in bubble bath solutions are irritating reagents to be avoided. Once you start to have UTI's you need to take showers only and use gentle non-fragrance body washes like Dove or something similar. Treat the privates very gently when washing and drying and wear only cotton breathable underwear, no tight pants etc. While this will not cure a UTI, it might help you avoid them in the future. I'm sure you find your bubble bath fun and relaxing, but I hope you can replace it with another activity.

Skylar