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  • So here's the deal... any suggestions

    Hello everyone :-)

    After trying everything in my ic bag of tricks, I have run out of options. Pyridium is not helping the burning. Elavil is not helping me get to sleep. Elmiron nor the oxytrol patch is helping very much. I feel like my pain has just decided to go to it's extreme.

    On Tuesday night, I went out with a couple of friends for supper. I never ate anything to trigger a flare. However, when I got up from the table, I felt my bladder drop and I got much pressure and that basketball feeling. I never said anything, however, when I got home - the pain continued. So soon as I got home, I took the medication that normally helps me and nothing worked. I took b & o suppository, extra-strength tylenol, Elavil, and pyridium. But the pain just got worse. I used a heating pad - I drank water - everything to try to get rid of this flare.

    By 10:00PM, I had had enough and went to the local emergency room. A very nice doctor, discussed my options and we decided that I would do an instill. I said, "Usually the navel pain goes right away after I get an instill" so let's try that first. Well, the nurse came in to do the instill - I had to tell them how to do it because they were clueless - I can do most of it myself except for actually placing the catheter - still learning. So we did the instill. After 30 minutes - it still did not help - I was still in a lot of pain. So then they decided to give me shots of morphine. The morphine helped to ease my pain for about a half hour. Then it would come on strong again. So they decided to hook me up to an iv... for intervenous morphine and prednisone. This just took down the pain from an 9 - 7.5. So then they decided to give me demerol which worked for a while - my pain went to about a 7. The pain stayed there and they had run out of options - they had given me all they could without having an overdose. So I went home.

    All day Wednesday - I was in pain. I stayed home - could not go to work. The pain just kept getting worse... even though, I took my normal prescriptions as well as demerol for pain and gravol. At 6, I made my way back to the emergency room. This time I had a doctor who couldn't answer any of my questions for IC. She got on the phone with a urologist and ever drug he thought would help - I was already taking. Then she thought - well, your nitrates a little higher than usual in your urine - although there is no blood in your urine ,it's not cloudy, so we'll give you cipro for 10 days. I was still in severe pain - so they gave me something way stronger than morphine - and that did nothing. Everything they gave me - did nothing. It would diminish the pain for about twenty minutes and then everything would get worse. When I finally decided - maybe the morphine and now this stuff makes my pain worse... helps it for a bit, then activates my bladder to be more irritated. Then I started going to the washroom - every ten minutes... spasm after spasm, huge navel pain. At about 12:30 they decided to give me a muscle relaxer through the form of a shot - which definitely relaxed my body and did take away some of the pain. But still my now 10 level pain went to 8. They gave me some more an hour later and my pain went down a bit more. However, I felt helpless. So I decided to leave the hospital after the doctor shrugged her shoulders at me in an arrogant way (three times) when I asked her what would help. She knew I was in pain, but she didn't care - at all. My friends were me and started asking the doctor the next steps - and the doctor talked down to them. We were all pretty frustrated at the end. I went home and I managed to get a couple of hours of sleep... feeling a little bit better this morning. But not well enough to go out and about - from my belly button right to my bladder feels like someone is rubbing sharp

    However, I am wondering what might help - so if you have any suggestions please help me? What do you think about taking steroids for inflammation. I am allergic to NSAIDS.

    Thanks
    Wizbe

    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
    [/I]

  • #2
    How soon can you get in to see your urologist? I think you need to find out if you have anything else going on other than the IC.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Hi Donna:

      I live 14 hours from my urologist. I see him in July - about three weeks time. I have phoned and left a message there. Hopefully, he will call me back. It's been a real pain. I am now thinking about going into a nearby larger town who will have more things on hand to help. (I hope)

      Thanks,
      Wizbe

      Current Meds:
      1 Elmiron 100mg 3x a day
      1 Cimetidine 300mg 2x a day
      4 Gabapentin 300mg 3x a day (3600mg)
      1 - 2 Atarax 25mg at bedtime
      1 baclofen 10mg 3x a day as needed
      200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
      2 belladonna and opium suppositories as needed for pain daily.
      Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

      I have tried but failed -
      lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
      [/I]

      Comment


      • #4
        Emergency Again

        Hello there :-)

        What a day! I went to the Emergency in a larger town thinking that they would have medication that would help. They did not. I was told to go back to the emergency in my own town. So I lid back down in the back seat of the car while friends brought me back home. I finally decided to go to the ER again in my own town. The doctor looked at me and as soon as he found out my problem was Interstitial Cystitis and that I was taking all the medications that helped - he told me that this was out of his league and he could not help me. I just started crying hysterically in the middle of the ER. I asked about some different medications - one being diazepam - this is the shot I had last night - that made me settle down and my muscles relaxed. When I asked about this, he said he wouldn't give it to me because it is addictive.
        Well - he sent me home, wouldn't do anything. I went home for about an hour and then decided that this was not good enough - so I headed to the hopsital again. The nurse called him in but he said that he didn't know what else to do for me because I was already on all the medication for interstitial cystitis. I tried to explain how I felt my bladder like drop and the pain is unbearable - he didn't even respond to that. So I am now completely done with this hospital - my doctor is away this week. I know that he would have found something that worked.

        Wizbe

        Current Meds:
        1 Elmiron 100mg 3x a day
        1 Cimetidine 300mg 2x a day
        4 Gabapentin 300mg 3x a day (3600mg)
        1 - 2 Atarax 25mg at bedtime
        1 baclofen 10mg 3x a day as needed
        200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
        2 belladonna and opium suppositories as needed for pain daily.
        Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

        I have tried but failed -
        lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
        [/I]

        Comment


        • #5
          I know this will probably sound too simplistic, but try Prelief. I had a UTI a few weeks ago that left me in an unbearable flare. In desperation, I started taking this product. Within 3 days, I was completely out of the flare. I went to Prelief's web site and after reading some amazing reviews about how other ICers had found complete relief from their symptoms by simply using Prelief several times each day, I have decided to continue to take it. Here's the link to the reviews:

          http://www.akpharma.com/prelief/testimonials.html

          Comment


          • #6
            cruel doctors

            Wizbe - I hope you are feeling better. I think you need the urologist right away and I think you have a case against the emergency room for not treating you properly. The fact that you were in that much pain which is not normal for you and that you felt like your bladder dropped, they should have done more. And valium is addictive for the long term, but he should have given you a script for a limited amount. Something sounds really wrong with those doctors treating you like that. Let us know how you are!
            I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

            Comment


            • #7
              unable to urinate

              Okay... so here's the deal now...

              The pain in my navel has diminished thankfully... I still am hurting. But now I am finding it very hard to urinate - and the longer that I cannot go, the more I hurt. I went to the washroom at 7:30 this morning and was able to pee... I have tried numerous times since then and I am still unable. I refuse to strain because I have a feeling that will make it worse. I have no idea what has happened to me with this flare but it is now craziness. I was able to work for an hour today and then I came home. Any suggestions? what the cause of this might be? Any suggestions what to do next? I'm pretty sure if I am unable to urinate in the next little while I will return to the hospital - but I don't really want to go there. For now, I will pray - that always helps!

              Wizbe

              Current Meds:
              1 Elmiron 100mg 3x a day
              1 Cimetidine 300mg 2x a day
              4 Gabapentin 300mg 3x a day (3600mg)
              1 - 2 Atarax 25mg at bedtime
              1 baclofen 10mg 3x a day as needed
              200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
              2 belladonna and opium suppositories as needed for pain daily.
              Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

              I have tried but failed -
              lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
              [/I]

              Comment


              • #8
                Whenver I have trouble urinating --- especially in a public restroom --- I put my hands over my ears to block out distractions and try to relax. Some people put the water in the bathroom sink running, and that helps them go. I have read on here that when some people can't go, they relax in a hot bath and just urinate in the water. Maybe even try a shower. With the warm water raining over you, it might help you to go. Also, if you have a dog or a cat that you could pet while on the toilet, that may distract and relax you enough, so that you could urinate. (My little dog loves to stand at my feet and be petted while I'm sitting on the loo). Hope you get some relief soon --- and yes, prayer is the best thing you can do. We acknowledge our need and ask for His help. There is nothing too hard for the Lord.

                Comment


                • #9
                  Not going too well. . . what should my next step be?

                  Okay... so I did urinate two times today. I really feel like I need to pee really bad and I go to the washroom and nothing will come out. I am in a lot of pain because of this. I do not want to go back to that hospital because of the way I was treated the other night... but this is ridiculous. I have never experienced anything like these - I just people would understand.

                  It would be nice to only pee two times a day if there was no pain involved. If there was no pain involved and I could just go and pee, I would be extremely happy - it would be like a miracle considering I always use the washroom at least 20 times a day... but that's not the way it is - there is lots of pain involved, many urges to urinate, many times sitting on the toilet but no luck... I don't know what to do. . .

                  I am so embarassed to go back there - although I know I shouldn't be. But what do I do? What's my next plan of action?

                  I have tried not thinking about the pain... I've journalled, I've prayed, I've read books, I've watched movies, and I've come online... as I lie down with knees bent (that's the only way I feel somewhat comfortable). This is craziness... crazy retention - I have never experienced anything like this.

                  I must try again - without straining... I hope I will be able to sleep tonight - but with this need to use the washroom and not be able to, it feels somewhat slim but I must remain positive! Just needing some advice of what my next steps should be.

                  Current Meds:
                  1 Elmiron 100mg 3x a day
                  1 Cimetidine 300mg 2x a day
                  4 Gabapentin 300mg 3x a day (3600mg)
                  1 - 2 Atarax 25mg at bedtime
                  1 baclofen 10mg 3x a day as needed
                  200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                  2 belladonna and opium suppositories as needed for pain daily.
                  Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                  I have tried but failed -
                  lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                  [/I]

                  Comment


                  • #10
                    Have you tried one of the medications, mostly prescribed for men, which help relax those muscles so you can urinate? The ones I immediately think of are cardura, hytrin, and flomax.

                    I hope you feel better soon.

                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      Pyridium, Elavil, oxytrol patch, gravol

                      All of these meds can make my retention worse, sometimes I can take them once in a while and at low doses. Have you increased the amount you are taking for this flare maybe they are causing the retention.

                      Sometimes thing I take will be fine then all of a sudden start causing me retention. My experience is any med that increases my retention, if I stop it it takes about 3 days before I start to pee normal for me again.

                      If you can't pee you need to go back to the ER and have your bladder drained, this may actually give you some much needed relief from the pain.

                      I think and this is just my opinion, if you felt something, drop this needs to be checked out, I am not sure the ER will do this but maybe now that you can't pee they will, since it could be causing the problem, total retention is an emergency.

                      Is your own GP back this week, if so go to his office and say you need to be seen right away, if you are told he is too busy just stand your ground and say you are not leaving till you get to talk to him for a few mins.

                      If he calls the ER and explains whats happening, they should treat you better, maybe they treated you that way because they all seem to be so afraid of people who they consider to be drug seekers, which you are not, but they maybe figure this because for what ever reason the pain meds are not working for you, and you need more than a normal situation would call for.

                      Also they don't understand that with IC, it can change the reaction you get from medications.

                      You can go to the IC Association site and print out a 2 page IC information sheet for medical care providers, I will go look for it for you and send you the link so you can print it out, it gives the basics for nurses and Dr's about IC.

                      In any event you need to seek some medical attention today, I too live in a small town and I know they like people to go in early if they need help so uro offices etc. are still open in the bigger centers, and they can still do blood work etc.

                      Please go to your Dr. or the ER something is not right, sooner you figure it out the better.

                      Good luck MG
                      My are with you all. May you all find a way to peace and joy in your lives.

                      Comment


                      • #12
                        I am sorry I looked for the 2 page article I found to medical professionals explaining IC, but I could not find it so I can't send you the link.

                        Sorry MG
                        My are with you all. May you all find a way to peace and joy in your lives.

                        Comment


                        • #13
                          doctor today

                          So I went to the doctor today - my own doctor. He was very helpful. He did an instill - it worked for a while but I'm still pretty tender, sore, can't sit down proper... however, hopefully it will get better. I know it is... going to keep praying.

                          Thanks everyone for your help. I'll keep you updated!
                          Wizbe

                          Current Meds:
                          1 Elmiron 100mg 3x a day
                          1 Cimetidine 300mg 2x a day
                          4 Gabapentin 300mg 3x a day (3600mg)
                          1 - 2 Atarax 25mg at bedtime
                          1 baclofen 10mg 3x a day as needed
                          200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                          2 belladonna and opium suppositories as needed for pain daily.
                          Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                          I have tried but failed -
                          lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                          [/I]

                          Comment


                          • #14
                            Did your instil help with your retention?

                            Sometimes I am told I am in retention because the pain is so bad from IC pain either, from a uti or IC flare, that my bladder can't relax to pee. Not my onle retention problem but it makes it worse for me.

                            My Dr. dosen't do instils, he is afraid of infections ( I am really prone to infections and I have a really hard time getting rid of them), but we got to the same uro and if the uro told him to try it he would.

                            So just wondering if the instil worked for the retention and if your retention was as still as bad when you finally got to go see your own Dr. and what did he think about it? My next app with the uro is Sept 7th, my gp could call him and get the instructions of what he would want the instil to be.

                            I hope you told him how the ER treated you in both places, and all that happened to you while he was away.

                            I have been praying things are going better for you these last few days.

                            I was haveing lots of problems with retention, I went into total retention 2x's in the last month.

                            My retention is doing better than it has in a long time. Just for a week or so, but the last few days IC symptoms have decided to bother me and they have been pretty good for a few months. I guess I can't get away from both at the same time.

                            I don't know if it was from the total retenion and acting like a hydro for me as eash time I had a very lg volume of urine, over 60 oc or 3 liters.

                            Or if it is all the ab's I have been on in the last while, I took 10 days of Cipro, then off a week and 14 days of cefiximene, and then 13 days of Levo. I know this sounds like a lot of Ab's and I don't like taking that many, but I have had a stuborn infection, and now my symptoms have now finally improved. This is often the case with me, I don't just take these on my own I have beening see my dr weekly and takling to him on the phone at least once a week. Also keeping track of temp and voiding diary as per his request.

                            The previous month I did have a gap of a couple of weeks between I am not too sure so maybe my timing is off a bit. I was on an Ab's for 21 days for a tooth infection, but not an ab's that helps the bladder type of infection, but taking all of these,it did clear up a throat and ear infection I had been battling for months, not a bad enough of infection to be prescribed ab's, but a raw throat and ear ache just the same. Maybe it all was from the infected tooth, whole knows, my throat amd ear feel better too after taking the ab's for the tooth.

                            I had a root cannel on the tooth 6 weeks ago and it is still sore so I thinkIi have to go see a dental specialist if it doesn't settle down by Aug. It is not really sore now, I notice it everytime I bite down on it so something is not right. My dentist is also thinking it my be aother tooth as well. So we will see.

                            Anyways for me Ab's do help my bladder I assume that it must in part be from the anti inflamatory effect.

                            Have a good day MG
                            My are with you all. May you all find a way to peace and joy in your lives.

                            Comment


                            • #15
                              Hi Mothergoose!

                              The retention did get better. I stopped all antispasmodics for one day so that it would calm down. It did. I think the retention was actually caused by all the narcotics that the ER had given me - morphine, hydromorphone, demerol, etc. I am really watching the medication that I am taking at the moment so that this calms down. When I sit, my pelvic muscles just spasm and my bladder goes nuts - so that is the part that I am trying to work out now. I went to the doctor today and had another instillation done as well as I got a script for muscle relaxants. We'll see how that works. I'm still not back to work per say - I have only worked maybe 12 hours this week in total. I haven't been able to and I refuse to allow this flare to continue by trying to do things anyway. I am learning that when my bladder says OUCH OUCH, then I better rest it. So that's what I have been trying to do!

                              I hope your infection clears up soon Mothergoose! That is brutal. Know of my prayers for you. About the root canal - make sure you see someone about that soon. It needs to be checked out - tooth infections can cause a lot of other problems if they are dealt with.

                              Blessings,
                              Wizbe

                              Current Meds:
                              1 Elmiron 100mg 3x a day
                              1 Cimetidine 300mg 2x a day
                              4 Gabapentin 300mg 3x a day (3600mg)
                              1 - 2 Atarax 25mg at bedtime
                              1 baclofen 10mg 3x a day as needed
                              200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                              2 belladonna and opium suppositories as needed for pain daily.
                              Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                              I have tried but failed -
                              lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                              [/I]

                              Comment

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