Announcement

Collapse
No announcement yet.

Urgent: UTI won't go away after almost 2 weeks--please help!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #46
    Emily,
    I just spent easily an hour on a reply....it just DISAPPEARED!
    I SO want to help you.

    I have been through similar troubles and had those tests...and a got a UTI from them!

    I s there a way to PM people here??? There used to be. That's how a person contacted me as she surmised I was an RN from my post. She was too and she guided me and provided much reassurance and validation when I was newly diagnosed.

    Let me know....

    **Moderators note: There are no PMs here at MS World. You may put your email address in your profile and exchange notes that way.**
    Disabled RN, Cardiac Intensive Care
    Dx'd 11/03/2005, Sx's for 15+ years prior
    STOPPED DM's 10/15/2010, last one, Tysabri

    Don't ask for a better life, ask to be a stronger person!

    Comment


      #47
      Dear Emily - if you are being treated for cystitis the dimethyl sulfoxide (or DMSO) is standard treatment. I had a series of these treatments and eventually it eased and calmed things down. I also had the bladder distention procedure. I admit it didn't go away over night, but with the treatments each week, the pain subsided.

      Here is some information from the Mayo Clinic about IC and the various treatments that can be used. http://www.mayoclinic.com/health/int...ents-and-drugs

      I feel your pain sweetie~ I went through this too I remember that putting a heating pad between my legs in the pelvic area would help greatly! I really can't remember what pain drugs I was on, but when I went to the ER, they gave me the same belladonna opiate suppository. Just a word of caution when taking this - for me, it worked immediately, but made me loopy - really drugged out! and I slept like a baby. So, make sure you are not alone (especially alone with your daughter), nor driving nor planning anything except sleep!!

      Another thing, Emily - this is not petty and stupid as you say! This is serious pain and it's happening to you.right.now. I understand fully this is a very trying time for you and your husband... it was for us too, but we got through it and so will you! So, take the meds - OK?

      Check back in often. And yes! we do care
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #48
        Hey Emily,

        I don't have a lot of time right now...but I have a question, are you on an antibiotic now? If you tested positive for a UTI, even though you don't have the culture yet, are you on something in the interim until they get the results of the culture?

        I'll get back with you tomorrow.

        Also, if your husband has to get back to work, is there someone, a friend or a family memberwho could help you out with this situation for rides to the dr., etc.

        Comment


          #49
          Dear Emily,

          I hope you feel better so so soon. I have been following your thread and have felt so worried and frustrated for you. I just wanted you to know that I am rooting for you. Nothing you wrote about seems petty or stupid, quite the opposite. I see so much strength in you. I am sending positive energy your way.

          Comment


            #50
            Hi Emily,

            I'm sorry to hear you are still having such a rough time.

            I'm glad Seasha could share some advice from her personal experience. I hope hearing from someone who has dealt with this helps you feel more confident in what was prescribed. I never heard of an opiate suppository until now. Cystitis sounds just awful.

            I think the urologist and nurse practitioner could have clarified what they meant by "numbing procedure" or "IC cocktail." I know there are plenty of patients who don't need any other information than that. But it's not that time consuming to still explain that dimethyl sulfoxide is standard treatment for cystitis! You sound like an intelligent person. I think I'd still give the urologist a "pass" this time. You both don't know each very well yet and, hopefully, he explains things better to you in the future.

            I was also wondering whether or not you were prescribed an interim antibiotic until the results of your urine culture came back. You didn't mention you were given one. Any dr. I've ever seen still started me on an antibiotic in the mean time.

            Something is going to have to be done about keeping your bladder drained, though, to keep from getting UTIs. Maybe the urologist needs to treat your cystitis first, I have no idea, but this is a vicious cycle!

            My case is different from yours and I don't have cystitis on top of a neurogenic bladder. I had some serious complications from UTIs, so my urologist sent me home with an indwelling catheter the first time I saw him. That was because I had to wait a few weeks before the nurse who taught the self-cathing procedure was available to see me.

            I know how much you want to be part of your daughter's schooling experiences right now, but KatieAgain had some good advice regarding that. I have had to miss quite a few school functions for my kids. I was in the hospital a lot. I fret more about it than they ever did. It forced my DH to get more involved, and that has turned out to be a good thing. Your daughter and husband just need you well again.

            You have been through a lot the past 3 weeks. I can only imagine how stressful all of this has been on you & your family. I hope there is someone who can help you out so your husband won't need to keep taking time off work.

            I really hope you start feeling better soon. We care about you and wish you well.
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment


              #51
              "big question"

              I tried to quote...but couldn't get it.

              I am with rdmc...did the guy give you a script for abx given you tested positive? ??! My worry is you somehow picked up a resistant "bug".

              UTI's were the bane of my existence for a long time...many ER trips on my "break" when I worked nights.

              What you told us were pain killers only.

              I have been free of them for some years now...it's nice not having to worry about having abx on hand!

              But more worried about you...SOMETHING is not right and I believe you are being mishandled!
              Disabled RN, Cardiac Intensive Care
              Dx'd 11/03/2005, Sx's for 15+ years prior
              STOPPED DM's 10/15/2010, last one, Tysabri

              Don't ask for a better life, ask to be a stronger person!

              Comment


                #52
                Oh Emily, I have absolutely nothing to offer you in the way of advice, but I'm praying for you, girl.

                I know that I somewhat "protect" my husband from having to know all that is going on ... but I've also been so worn down some days that it leaks out anyway. Chronic pain for so long will do that. I've also had the "just do what the doctor tells you" lecture ;-).

                Re: your daughter and school -- the start of school will give her some good structure and normalcy -- I would actually let the teachers know a little of what is going on so they can be watching to make sure she is okay. I have found teachers to be SO supportive of children experiencing any sort of trauma/lack of normal routine at home (we're foster parents).

                I'm so sorry about what you are going through ... and as I said, I'm praying for all three of you.

                Comment


                  #53
                  Well...that did not go as planned.

                  I know you are in an extraordinary amount of pain. Been there, done that, hated it and I now go through extreme measures not to get a UTI. My sister had 4 kidneys and I got to watch what she went through too...there is no doubt UTIs really suck.

                  But, I think your doctor is doing the right thing. I might take some flack for that statement, but I have my big girl pants on right now.

                  So lets look at some of the positives of this whole mess. You finally got a positive culture in the docs office. That is a very good thing. He can have that grown out, figure out what it is and prescribe the correct medication and take care of it the right way. That is preferable over him guessing what to give you at this point and then you coming up with negative cultures again because of antibiotic usage.

                  After he gets rid of the infection, he will proceed to see if you are not fully emptying your bladder and other things. But this Doctors priority is to protect your Kidneys and get rid of that infection...and it seems to me that is what he is doing.

                  I come from a family with doctors. Believe me, he knows you are in pain, he knows you are miserable and right now he feels pretty darn useless not being able to fix you up on the spot. And although I do not personally know your doctor, he probably does not think you are an idiot...so stop worrying. Doctors have heard some pretty ugly things at work.

                  So, what do you do in the meantime? You rest. RDMC gave you some exceptional advice in regards to home treatment...I 100% agree on the ice pack and sitz baths (you can add 1/4 box of baking soda for some extra relief) drink only water and keep the area "free and breezy". Wear a sundress or nightie and no underwear. And tell your wonderful hubby no mambo until everything is right as rain.

                  The 26th is not far away...seems like it...but it isn't. If you do not get a good feeling of satisfaction from the Nurse on Monday...off to the ER. You will at least have a positive culture and at that point I would insist on being admitted.

                  Darling, remain calm, do some home remedy...enjoy your evenings with your child. Don't worry about the things you can not change at this point, it will make it worse. Believe it or not, I personally think you are headed in the right direction an in a month from now this will be nothing but a bad memory.
                  Katie
                  "Yep, I have MS, and it does have Me!"
                  "My MS is a Journey for One."
                  Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                  Comment


                    #54
                    Emily...all of the above,

                    have they checked you for Kidney Stones??? fed

                    Comment


                      #55
                      I am praying for you to be healed quickly and in the mean time praying for pain control so that you can enjoy the evenings with your husband and daughter. (hugs)

                      Comment


                        #56
                        I might lose my job, and I am still in so much pain. Please help

                        Hi everyone,

                        I see how many of you have replied and as soon as I can I am going to print up what you’ve written and read. I have been fighting this 24/7 but I haven’t had success, and things are reaching a breaking point.

                        My little girl will be home from school soon, but as soon as she is in bed I am going to curl up in bed and read everything you have said.

                        Thank you for staying here for me and for not abandoning me. If you can tolerate an unsolved mystery and the idea that I may be crazy, please stay with me a little longer. Part of me thinks I am no longer worth help, and part of me still wants to fight.

                        So this is another long post and I have bolded the most important parts. The problem is still not solved; it is worsening, and I am starting to think I am crazy. And that is almost the worst thing of all, because crazy means I am hurting my daughter and husband for no reason. If you read this and think I am crazy—or there’s chance I may not be, please let me know.

                        When I last wrote I’d just been to see the new urologist for the second time for the cycstocopy and he’d said my UA came back positive for infection and that he couldn’t do the procedure. He had prescribed me the Bellodonna Opiate and done the I.C. cocktail.

                        We could not get the Belladonna Opiate in our state. My best friend (the one whose family has been taking Ellie) volunteered to come with me and my husband to my neurologist in Colorado. I was in so much pain I was crying, couldn’t sit up straight, it was hard to walk. And still all the same symptoms.

                        We went to my neurologist. We saw his PA. She heard my whole story and saw me and said that this was not an MS problem, it was a urology problem, and she sent me to the ER and also gave me a referral to a urologist.

                        My husband, friend and I went to the ER. There they looked at my urine and it came back negative (so it was negative Monday the 19th, positive Wed. the 21st, and negative Fri. the 23rd).

                        They gave me more Percocet, more Bentyl, and we finally got the Belladonna opiate suppositories. They gave me a referral to the same urologist my PA at the neurologist’s office referred me to. They injected me with a drug called Diludad and I stayed out of pain for the 2 hour ride home except the last half hour, when the bladder pain started to come back.

                        My friend was very optimistic. She said everyone had taken me seriously and that I now had the pain medication I needed and I could call the urologist in Colorado on Monday with the emergency referral and that my husband and I might only have to miss a couple more days of work.

                        I remember in the car as we drove through the night thinking to myself, no. It’s not over. Maybe I am just not thinking positively enough? This is where I am beginning to wonder if I have gone crazy and am hurting all those around me.

                        My husband and I got home and we put Ellie to bed and I took the Belladonna Opium suppository. I slept from midnight to 4 with only mild pain but woke at 4 with the same obscene pain that makes me rock and cry. I woke up the next morning, Saturday the 24th, and told my husband that I still couldn’t sleep through the night.

                        This went on all through Sat. and Sun. I can take the Belladonna once at night, so I do, and I get 4-6 hours of sleep. Then all day I alternate with Percocet and Bentyl, but they seem to be losing their efficacy, and they make me drowsy, nauseated, and constipated. On Sunday I told my husband I was not going to be able to go back to work. I can only stand up straight if I hit just the right wave of Percocet or Bentyl, but because of the side effects I can’t work on them.

                        This morning was Ellie’s first day at first grade. The Belladonna had stopped working at 4 am but I had woken up and crawled to the bathroom, squeezed out a little pee by rocking back and forth and counting with my hand under running water, and then had taken a Percocet and a Bentyl. Ellie came and crawled in bed with us and said she was so excited about first grade that she couldn’t sleep, and my husband and I cuddled her and I got her in her pretty dress and braided her hair and my husand gave her Fruit Loops and I told her I was so proud of her. I was only in minimal pain, though I was drugged.

                        As soon as Ellie was off to school I called the urologists I’d been referred to by my neurologist and the ER, and it turned out to be the same practice in different locations. I was told “as urgent they got was with a P.A. on Sept. 12.”

                        I told my husband the bad news. I still have all the same symptoms: urinary hesitancy, urgency, frequency, burning with urination, nausea, low grade fever, low back pain, inability to feel like I can ever empty my bladder.

                        But this is strange. I would say the pain has doubled in intensity. If I am not on Percocet, Bentyl or Belladonna I am doubled over and gasping.

                        However the most intense location of the pain HAS MOVED. It used to be in my lower back. Now it is as though I have a lit match just inside my bladder and the burning and heat is radiating up through my bladder. Right now as I sit and type I actually feel as though someone knifed me in my bladder up through the opening. And I am on Percocet.

                        When I couldn’t get the appointment with the urologist my neurologist referred me to, my husband and I agreed to go back my PCP here in town. We were both supposed to return to work today (we are teachers) and I cannot work, and my husband is unprepared to return (lesson plans, etc) because he has been driving me all over the state and beyond to try and get answers for me, unsuccessfully.

                        We got notes from our PCP excusing us from work. Our PCP made an appointment with the one urologist we have here in town for tomorrow at 3:20. My husband dropped me off here and came in to take my Percocet and post to you and he went to take our notes to Human Resources.

                        And as I was writing this, my husband just called me. He was sitting with a wonderful woman from Human Resources who has always supported me. She told me that he was eligible for FMLA to care for me, but that I had used mine up with the wheelchair relapse and needed to apply for Long-Term Disability Insurance. She also told me that my job was no longer protected and that I could be terminated.

                        My husband needs to go pick up Ellie from her first day at first grade. And all of you out there listening, I am crying, and I can’t stop.

                        I feel as though I am losing everything. I have Ellie and my husband, and those are the biggest blessings in my life, and my husband can keep his job for 12 more weeks and he can take me to specialists and try to help—but I am looking at losing my job, and I loved my job.

                        And it all started out as an UTI on July 31. I don’t know how I got here, unable to work, barely able to participate in life, surviving on Percocet and opiates. We have been to 5 PCP visits, 2 urologist visits, 1 neurologist visit, and 2 ER visits. The pain worsens daily. My neurologist flat out said it wasn’t MS.

                        Oh my goodness. I just feel wave after wave of grief sweeping through me, along now with the pain. I don’t want to be self-pitying or a whiner. But I may now lose my job. And there may be nothing wrong. No one can find anything wrong. Granted, I haven’t been able to get a urologist to look at my bladder, except the nurse’s ultrasound on Monday the 19th.

                        Do you think there’s something wrong with my bladder—or is there a possibility I am “losing it”?

                        What should I do about Long Term Disability?


                        I just am getting more upset, because I keep thinking if I’d gotten better care at the outset, when I had the UTI only July 31, that I would be up in front of a classroom today.

                        But there is no good thinking that, especially because no one can find anything wrong with me except the urologist saying on Monday the 19th it looked like cystitis, and then saying on Wed. the 21st that I had an infection and he couldn’t investigate, and then the ER saying on the 23rd that I did not have an infection or cystitis but bladder spasms.

                        When I write it out like that, it seems like they are a bit crazy, but maybe I am just looking for someone to blame?

                        I am so sad. The pain will not stop. I can’t get a full night’s sleep. My little girl knows something is wrong and keeps trying to cheer me up. My husband is having to take medical leave. I am possibly losing my job. What do I do?????

                        I swear to you, before the July 31 UTI my daughter and I went to Michigan to see my family for her birthday, and I took walks every day, and she and I swam in Lake Michigan out to the farthest buoy with me holding her in my arms, and we played soccer in the park.

                        I just feel like when I got that UTI pieces of my life started being taken away and carried off, and I don’t understand why or how.

                        Please help if you can.


                        Emily

                        Comment


                          #57
                          Originally posted by Emily74 View Post
                          Oh Seasha, rdmc, Kimba22, thinki'mjob, and everyone, thank you!

                          I dutifully took my Macrobid and slept all yesterday afternoon and into the evening. When I woke up I felt better and my fever was only 99. I could pee because I was using the OTC pee drug. I was cheerful, even, and watered our garden with my daughter and read her stories (she loves The Boxcar Children) and put her to bed.

                          But I woke up today with the same back pain. Bad nausea and gagging (ewww). Hard to stand up straight, very difficult peeing even with the OTC pee drug, and fever is right now up to 100.5 on Tylenol and ibuprofen. I tried to sleep again this afternoon in the hopes that it would make it better, but I woke up feeling just as bad.

                          If I could, and weren't afraid, I would go to the ER tonight with my husband. He seems to see now the seriousness of the situation.

                          I will let you know what they say, and thank you with all my heart.

                          Emily
                          I hope this finds you well. I had exactly the same symptoms ( nausea, could not pee, and I could not stand up straight). The first ER I went to was at a small town hospital, they were afraid to do any scans because I have a baclofen pump. I Googled the reasons that they said they were afraid to do the scans, and it was in plain language that I ( untrained) could understand. They gave me two shots, one was an antibiotic and the other a muscle relaxant. He told me that I should feel better after the antibiotic had a few hours to work ( yeah right, in other words after the muscle relaxer took affect).I needed the ambulance called, and after my first visit, I had to go again the next day at a more reputable hospital ( where they diagnosed me). After a simple catheterization, I felt like 1 million bucks!
                          hunterd/HuntOP/Dave
                          volunteer
                          MS World
                          hunterd@msworld.org
                          PPMS DX 2001

                          "ADAPT AND OVERCOME" - MY COUSIN

                          Comment


                            #58
                            Emily, I am so sorry you are still suffering.

                            Comment


                              #59
                              I am praying for you as soon as I get through with this post.

                              Make sure that you tell the doctors about swimming in whatever (can't remember) body of water that you were in. It could be an important clue to your infection.

                              I would also call the doctor that prescribed the suppositories and see if you could take them more than once a day.

                              I wish that there was something more than and ear and a (hug) that I could give you. I want to tell you not to give up hope and to pray, prayer works.

                              Comment


                                #60
                                OMG! !!

                                Emily,
                                As I read your post, I just got madder and madder!

                                First: STOP taking the bentyl! That drug is to slow down gut motility. You got it originally because of diarrhea. You are on hard core opiates and those ALONE will stop a train!!!

                                Did you find out about ur cultures? ?? I still suspect you have a resistant bug that is at the heart of this problem! !! All the past abx you said you were given are "candy" to a lot of bacteria!!!

                                I know ALL TO well about 'losing' your job. I had to sue the hospital I was so proud to work for as they pulled that whole FMLA thing on me too.
                                Unfortunately, what they told you IS true, but you have ADA laws at your disposal since you are clearly medically comprised as a result of your disability.

                                PLEASE take me up on my offer to talk more "privately"...I really think I can help you!
                                Disabled RN, Cardiac Intensive Care
                                Dx'd 11/03/2005, Sx's for 15+ years prior
                                STOPPED DM's 10/15/2010, last one, Tysabri

                                Don't ask for a better life, ask to be a stronger person!

                                Comment

                                Working...
                                X