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

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    #31
    Go to an ER!

    Years ago, before the MS diagnosis, I had a UTI that was awful, then "went away" and then had back pain. Nothing as bad as what you are describing, Emily, but I got to an ER and they immediately put me on intravenous antibiotics and I was better in a few days.

    Then I had UTIs for a year on and off, but the kidney infection business: no joke. That's about the sickest I've ever been, and it wasn't as bad as what you are describing. If your pcp or urgent care people aren't helping, go to an ER....a different one, if you've had issues. Back pain, non-healing uti = an emergency, and you deserve to have it treated as such. Best of luck to you!

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      #32
      Hope???

      Emily hasn't posted/replied to anything for 3 days.

      I'm guessing/hoping, she was admitted and is FINALLY getting some treatment!
      I'm hoping her daughter is having a great time with her, for now, "siblings"! I had 3 brothers and was the oldest....what a hoot!!!
      Being the oldest, I could throw a football farther, baseball was a snap! Even the coach wanted me, but it was the 70's....NO girls back then in little league! Big !

      Send word soon!!!!!
      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


        #33
        Originally posted by brothrgoose View Post

        I'm guessing/hoping, she was admitted and is FINALLY getting some treatment!
        I'm hoping her daughter is having a great time with her, for now, "siblings"!

        Send word soon!!!!!
        I'm so glad she finally went! I was really concerned about her. I can only imagine the helpless feeling of her daughter, who was giving her pretzels to help her feel better .

        I just hope she got treatment before any damage was done to her kidneys or anything else. I would expect her to be kept several days, at least. Both times I had kidney infections I was on IV antibiotics for 10 days. And I wasn't as bad as she described she was!

        It's sad she was so traumatized from her previous experiences she was afraid to go back to the ER. I've had some pretty bad experiences myself, so I can empathize with her. I think most of us can. Thank goodness I've had a couple of caring ER drs, too. I really hope they are taking good care of her this time and treating her well. I hope her doctors have taken note she waited so long because of how badly she was treated in the past!

        And, if it were me, I'd fire that PCP. Who knows how bad she would have gotten before he finally told her to go to the ER. Good grief, even the lab technician told her it hurt to just look at her.

        Emily, when you are well, please let us know! We're all waiting anxiously to hear you are OK!
        Kimba

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

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          #34
          julie g

          Hi Emily,

          I have had MS for 20 years and when pregnant with baby number 2 had recurrent UTI"S. I was on constant antibiotics and in pain. I cannot empty my bladder which is why I kept getting the infections. I had different bacteria each time so needed different antibiotics each time. I tried self catheterisation but it was agony so now I press on my bladder and rock until every bit of urine is expelled. I also tried a homeopathic remedy called cantharis ( 6c or 30c) which did work for me, although I know it doesn't help everyone.

          I think self catheterisation may help you because it is the small amount of urine left which causes the problem. It is a shame you live so far away from your neurologist but a general practitioner or urologist will be helpful. I live in the UK ( 70 million people in a land the size of Texas) so everyone lives very near to a General practitioner or a hospital and, thankfully, it's all free.
          I know you feel dreadful but it will get better with the right antibiotics and if you can get every last drop of urine out by pressing with your knuckles. Also drink as much water as you can to help flush out and dilute the bacteria and drink lots of cranberry juice ( without the sugar ) as it stops the bacteria sticking to the bladder wall. Insist your doctor does a urodynamics test to show how much urine you are retaining and ask to be taught self catheterisation. You are not alone. Positive thoughts being sent your way Emily and I hope you get this sorted soon. take care, Julie, London, UK

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            #35
            Hi Emily,

            I hope you are in good hands (like doctors & nurses in a hospital) and are on the mend.

            Please let us know how you're doing.

            Bree

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              #36
              Emily,

              I just read this thread and I do hope you are in the ER getting the treatment you need. Please let us know how it goes~!
              Newbie

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                #37
                Went to ER--but still very sick--scared. need more help.

                Hi everyone, You are so kind and wonderful. I see I have more replies but I don't have time to read them because I'm starting to double over in pain again. But this is my update, and I bolded my questions so you can skip to the end. Please, please help if you can. I have to see the urologist tomorrow at 11:15 Mountain Time. Thank you so, so much for caring. I will read your posts as soon as I am not in so much pain.
                I went to the ER. I was in so much pain I couldn’t stand and needed to use a wheelchair and they thought it was for my MS.

                Before the UTI on July 31 was taking two 20 minute power walks a day and swimming and playing soccer with my daughter. This is breaking my heart. She starts first grade on Monday and I am supposed to start work the same day, and I am still so sick.

                At the ER they diagnosed me with antibiotic induced colitis. They kept me in the hospital and hydrated me with saline and managed my pain with Fentanyl. The dr. said she was afraid of something called C diff but I did not have it. And my urine came up clear.

                The dr. did say she thought I might have something called cystitis and she referred me to a urologist. She sent me home with the name of a urologist, a script for Percocet for the pain, and a script for Bentyl for spasms, and a script for Zofran for nausea.

                I could not get in to see the urologist until this Monday the 19th. We had to drive an hour to go to the hospital last week and and we had to drive an hour to see the urologist. I was in pain all weekend. I have started to wear an adult diaper for the car rides. Percocet helps. Bentyl is bad, I think. When I take it my whole insides feel heavy from diaphragm down, like cement, and it’s hard to breathe, and it hurts.

                I saw the urologist on Monday the 19th. He did an ultrasound of my bladder and said I had severe cystitis and that the neck of my bladder was so swollen it was almost closed.

                He prescribed Celebrex and told me to keep taking Bentyl and Percocet and Zofran. We scheduled a dilation procedure for Wed. the 21 at 11:15 (tomorrow!!!). He said it would hurt but that he wanted to try to open the neck of my bladder, and that it worked in 70 percent of cases. He also said this has gone on too long so there are no "quick fixes," but this may ease it.

                He also said he would do a cystoscopy too so we could try to figure out what to do about my MS-related bladder problems going forward so I don’t keep getting UTIs.

                The trouble is, it is Day 21 of pain and I am starting to crack. The Celebrex did not help me when I took it last night—it seemed to give me stomach pain and the jitters, and it didn’t touch the regular pain. I only slept 2 hours last night. So today I tried to sleep using Percocet and Bentyl but I only half slept because of the Bentyl breathing problem. I woke up this evening when Ellie and my husband were home and my diaphragm had that cement feeling and I was gasping for breath.

                My husband had Ellie in the bath and I came into the hall and hid behind the door and I just started crying, and he hugged me and sent me to write to you and said he would come talk to me when Ellie was asleep—neither of us wants to scare her and see me like this, sobbing and doubled over in pain.

                I can’t take the pain much longer. There are times when it is so bad I have to crouch on all fours and rock in place and just moan. It reminds me of when I was in labor (I am not pregnant!). And now I am not sleeping. With the pain since July 31 I was only getting 5 to 6 hours of sleep--now I am down to 2. And my pee still won't come out right.

                I see the urologist tomorrow at 11:15 for the dilation and cystoscopy. Is there anything you know of that I should ask him for? For the pain, and so I can sleep? I won’t be able to recover if I am in constant pain and can’t sleep. Please, if you know what to do, please tell me.

                And if you know how long it might take me to recover, can you tell me. I want relief from the pain,
                but I also want to go to Ellie’s first grade Open House this Thursday and her elementary school welcome back party this Friday and I am supposed to go back to work on Monday and I am afraid to tell them I am sick again, because they have not been very accepting of it.

                I am so sorry to keep bothering you about this, but I am getting really distraught. I do not want to be a wimp. I am trying to be strong. But I have to have this pain relieved, and I have to sleep, or I won't be able to be strong, right? I hate crying and moaning and rocking. I just want to be a person again.

                Emily

                Comment


                  #38
                  Dear Emily - I'm so glad you gave us an update~ we have been worried about you! I wish I could answer your questions.

                  Your ordeal reminds me of something I went through in the 90's (pre-MS dx). Horrible, horrible pains with the need to pee frequently, severe pain in the pelvic area, etc. All my cultures came back as free of bacteria. I landed in the ER as well.

                  Long story short, but when I met with the urologist, he told me I had Interstitial Cystitis and I had the same procedures you are going to have. He told me I'd have this the rest of my life. Well, it DID go away eventually and never returned!! Complete remission going on for 16-17 years now.

                  I am hoping the same complete recovery for you as well. It was such a nightmarish ordeal that I've blocked so much of it out of my memory. I know I was given something for the pain, but I blocked that out too. I'm so sorry I can't remember Whatever it was, it was strong!

                  Demand the need for some strong medicine! You shouldn't have to suffer anymore!!

                  Please keep us updated on how everything is going. There are a lot of us who care Hopefully, someone will have better answers. Sending you healing thoughts and prayers and a big HUG!
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #39
                    Emily74; Out of curiosity, were you checked for Lyme disease. As much as your problems sound like the MS thing with UTI's; evolving to types of cystitis-you really want to make sure, this is not another symptom of something else.

                    As, I have been reading plenty on Lyme disease, bladder disfunction and MS; my next door neighbor was dx'd with Interstital Cycstis, 13 years ago and has been through plenty. Now, they have found, late stage Lyme disease.

                    It seems proper pain control would help your urine problem, as well. You M.D.'s know what works and what doesn't for that problem. Try asking the Urologist for a prescription~often, they are more sympathetic in that regard.

                    I'd just smoke some really good medical marijuana, just to deal with that stress! LOL Really, it could help the pain and reduce your stress.

                    Sure feel for you with your daughters events and going to work, coming up so soon. Be sure to explain to your M.D.'s the importance of that~they are human too! You will get the best answers or guess's from them.

                    Sure hope this gets turned around soon. fed

                    Comment


                      #40
                      Going through the same

                      Hi Emily. I just wanted to wish you the best of luck with the urologist today. I am going through the same pains you are right now.

                      My urinary pain started also early August. Intense pain when peeing. I too cry out in pain...

                      I saw a urologist yesterday at the military hospital, had the cath me, do the ultrasound to see if I retain urine, etc.

                      I started nearly 3 weeks ago with the macrobid, 7 days worth, didn't work though, and after finally getting in today I was put on 5 days cipro and something for the intense pain.

                      I am hoping this is going to work, as it is horrible pain, I can't even sit down without feeling this pain.

                      Was even thinking of going to ER but with MS, doctors are very quick to say that's where the problem lies. I hope you will find relief and will be praying for you at that time that they will find the reason why you are hurting so bad.

                      Good luck Emily.

                      Christin
                      Dx April 12, 2007

                      Comment


                        #41
                        Darling....Cystitis, UTI or whatever hurts like all get out. Sounds like you are going to get some much needed help today.

                        As far as your baby...it is amazing what little ones know. My Mother was very sick when I was your daughters age, very sick. And they did not hide it from me. My Dad went to all my school functions...and all was good. I would go home and climb up in bed with my Mom and tell her all about it. As I look back, I think it was some pretty special bonding for all of us. My Dad did things that most men would not do back then.

                        You need to get yourself better and stop worrying about all your daughters school stuff...there will be many more moments like that, believe me. Have Dad take pics and enjoy time with her when she gets home.

                        You have to prioritize...and right now the first priority would be to get you feeling right as rain. You can't do your family any good being sick.

                        Good luck at your docs appointment today. And although there might be a little pain involved...just keep thinking of all the relief it might bring.
                        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


                          #42
                          Emily I hope you get some real help today and that the procedure brings you some relief. I was hospitalized very briefly back in early June for suddenly not being able to pass any urine. An emergency MRI found two new lesions on my thoracic area. I had to go home self cathing. If you don't get relief from the procedure you need to ask about this option.

                          Constantly being full is wrecking havoc on your poor bladder and can harm your kidneys. I was able to stop cathing for a while but started another relapse of Optic Neuritis and Vertigo at the beginning of August and it seemed to also cause my bladder to go back to having retention issues.

                          I've also had a resistant UTI the last three weeks but thankfully it finally seems they have me on the right antibiotic and my low grade fever is gone. Hoping that was the main cause of the retention this time but the urologist isn't so confident that it will fix the problem at this point.

                          Please keep us updated as to how you are doing.

                          Comment


                            #43
                            Emily,

                            Thanks for checking in. Glad the urologist is trying to help.

                            A couple things, you will probably need pain pills. I don't have a lot of pain with a UTI, but I've had urinary procedures and know the area is so sensitive and pain is a real thing., If Celebrex doesn't cut it...don't be afraid to tell them it's not handling the pain.

                            Also, there are analgesics for the bladder, you can get them OTC, but they can be prescribed also.

                            As to the procedure, any procedure dealing with the urinary tract is painful...just remember that the pain following the procedure will ease, and just keep telling yourself that, because it's hard to deal with that level of pain if you think it's going to go on and on. If you have to
                            lie down because you can't sit, then lie down.

                            Another trick I learned, sort of out of desperation, is after the procedure, when you come home, get an icepack and just put it on the painful area...not directly on, you can have your underwear or pants on, the ice pack numbs the area temporarily. (just like after you have a baby and they bring you ice packs, same idea.)

                            As to pants...do you have baggy pants to wear ...baggy pants are much better than anything tight or binding.

                            And one more suggestion to handle the pain, have your husband go to the drug store and buy a sitz bath...they're around 10 bucks and they sit on the toilet rim, then you put the lid down. If you fill it with warm water before you have to pee, when you do pee it eases the pain. Same thing can be accomplished by sitting in a tub of warm water, but the sitz bath is much easier.

                            We're all pulling for you, MS and urinary infections seem to plague a lot of us, so when you write that it hurts, we believe you, and know it's a very hard thing to deal with.

                            Comment


                              #44
                              THANK YOU--AM ABOUT TO LEAVE

                              Everyone, thank you for getting back to me.

                              I am about to shower and get into my diaper and "hospital outfit" (loose fitting pants!). My daughter is at summer camp til 5:00, my husband will be with me, and I am going to print out all your posts and read them in the car on the way for help and to boost my morale with your kindness and generosity.

                              Without you, I think I would have started to go crazy. I know I wouldn't have known what to do to get treated. I can't thank you enough, and it means the world to me that you care. I told my husband I could not believe the outpouring of warmth and support from you.

                              I will update you as soon as I can sit up and talk.

                              Emily

                              Comment


                                #45
                                bad news. if you have the patience, can you help again? I am still in trouble.

                                Hi everyone, I am so sorry to keep bothering you. The visit to the urologist did not go well at all.

                                This is another very long post. I bolded my questions at the end so you can skip down. Please help. The doctors seems to have lost patience with me and my husband seems to have lost patience with me and I feel like I am am “up a creek” as my Mom would say.

                                My husband and I waited an hour with me doubled over. I asked the nurse if my husband could come back and talk to the urologist before the procedure. I gave a urine sample right when we got there.

                                The urologist came in and said I tested positive for a UTI. On Monday, two days ago, when I first saw him, I tested negative for a UTI. In the hospital I tested negative for UTI. On Monday August 12 my PCP would no longer treat me because I tested negative for a UTI. The only time I tested positive was when I used the OTC strips at home before I went to the ER last week.

                                The urologist said that he could not do any procedures if I had a UTI. When I asked him why the results kept changing he said medicine was not an exact science. He said he would culture the UTI and the results would be back Monday the 26th and his nurse would call.

                                I tried to be very kind and respectful but I tried to explain to him this is over 3 weeks of extreme and escalating pain, and I am getting worse, not better, so I took out my notes and asked questions. I was really nice and soft spoken.

                                I asked if while I waited for the UTI results I could have more pain medicine and that I also needed to know what would happen for a follow up. He said he could not say about a follow up because he thought that the reason my bladder was in trouble was because I had MS and he could not control that.

                                Then he changed his prescription for pain relief. On Monday he prescribed Celebrex and Levcin and said to continue taking the Percocet from the emergency room and the OTC AZO.

                                I did tell him the Celebrex wasn’t working, so he prescribed Naproxen instead. He said no more AZO and no more Percocet and he prescribed a belladonna opiate suppository. When I tried to ask about the suppositories he talked again about medicine not being an exact science and asked if I had ever been bow hunting. I was doubled over in pain. He said, “If you are in so much pain you should have a numbing procedure done.” I tried to ask what it was and he said he would get his nurse practitioner to explain it and he left.

                                When he was gone my husband said I was doing no good by arguing with the doctor and just to do what he said. I said I am not trying to argue, I am trying to find out what is happening and what he is doing. My husband said that this was the 8th appointment we had been to for this and it needed to be resolved and I needed to get the procedure.

                                The nurse practitioner came in and she had me get up on the table. I asked if there were any pain relievers and she said “we don’t keep those around.” I asked what I was having and she said, “an I.C. cocktail.” It hurt very badly, though I have been in so much pain for so many weeks I just covered my mouth and screamed into my hand so it was silent. I held still.

                                Afterwards they had me make a follow-up appointment for next Wed. with a nurse practitioner for another “I.C. cocktail.” The doctor would not come out to see me again, only the nurse. I made the appointment.

                                In the car the way home I started getting more pain than before I had the I.C. cocktail. We stopped at a gas station and I could hardly walk because my back pain was worse and it felt like my pelvis was numb. I went in to the stall to pee and when I did only a little bit came out and it was reddish tinged (I didn’t take AZO today).

                                I got back in the car and talked to my husband. He said he was sorry about what he’d said but he was frustrated and that he was very worried because both of us need to go back to work or we are in danger of losing our jobs. I said I understood and that this was very frustrating for me too, and that I was just at a loss.

                                In the car my back pain got worse than it has ever been and I developed a horrible headache. Now that I am home it is harder to pee than it’s ever been and it’s still reddish and just dribbles. It is still hard to walk and I am nauseated. And even though the doctor said it was a “bladder numbing procedure,” I just don’t see how that can be true!!! My bladder hurts as much as ever or more, so, so sore. I also feel like there is a safety pin sticking in it. I told my husband it feels like the safety pin needle part is poked in my bladder and the head of the safety pin is dangling out and whenever I switch positions the safety pin digs in more.

                                The second I got home I did research on the “I.C. cocktail” and I can’t find the term. But I did find under interstitial cystitis a bladder wash involving “dimethyl sulfoxide.” That sounds like what happened to me. But the urologist never said I had interstitial cystitis.

                                So here are my questions NOW! My goodness, thank you for your patience, if you still have any left. If you do still have patience with me, please know that I will be so, so grateful, because I am still in trouble, and it feels like I can't find a good doctor, and it seems like my husband has reached his limit.

                                1. If what I got was “dimethyl sulfoxide” when will it get out of my system? I can’t find that on google either and I think it’s causing the awful headache (I’ve never had such a bad one) and the bloody urine. I may be crazy but I think something about it or the procedure caused worse pain. He was very clear it was not a dilation or a cystoscopy—that he would not do those today because I have an UTI. I had researched all those very thoroughly but I can’t find anything on the thing that happened today.
                                2. I told my husband I would not go back to this urologist. I feel like I am leaving a paper trail of being a hypochondriac or an arguer but I can’t go back to someone who would not answer my questions. I just don’t think it’s right. Do you agree or am I getting paranoid because of the pain and lack of sleep?
                                3. Should I take the drugs this urologist prescribed? My husband went to the pharmacy to get the Naproxen. That came through but the belladonna opiate suppositories they had never heard of and they have to order. I only have 9 Percocet left since Aug. 15, and I was supposed to take one every 4 hours, so I think I did pretty good, so I am going to hoard them until I cannot bear it. Or I will use them to try to go to my daughter’s events and to go back to work. But I am scared to take anything this urologist recommends.
                                4. And now what do I do? I have been trying so hard to protect myself by going to doctors and the hospital, but after what happened today all I want is my former pain instead of the headache safety pin bloody pee pain.


                                And I know this is petty and stupid, but I feel humiliated. I am a nice woman with a family and a little girl and a job that I loved. I have had relapsing remitting MS for 8 years and I eat a good diet and before the UTI I exercised almost every day.

                                And now I am staggering across gas station parking lots doubled over bleeding into adult diapers. I know I shouldn’t care about my dignity—I know I should just care about getting better—but I don’t know how to get better and I am so, so tired—only 2 hours of sleep at night because of the pain—and maybe that’s making me irrational.

                                Thank you so much for anything you can tell me.

                                I know you have been concerned, and at the gas station bathroom I reminded myself that you think I am worth caring for. Thank you for doing that for me.

                                Emily

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