Announcement

Collapse
No announcement yet.

IC is back after bladder removal

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

  • #31
    Re: IC is back after bladder removal

    Hi neohioic,
    Thank you so much for responding to my post. I’ve been dealing with “acute” IC since 2014 but really since the age of 12 but never diagnosed ( I’m now 57). I am going for a surgical consult with a urologist in July but really don’t know if this is an option to choose after reading so many stories of failure to heal the IC. Yes, I have hunners ulcers, they get fulgurated and come back and the fulgaration / hydrodistention only seem to aggravate things. I do daily instillations as necessary, a good week I can do 3 ( only because I am paying out of pocket for the instills and doing them everyday is too expensive for me) so I try to reserve those for the times I’m so sick, nauseous and in pain that I can’t function. I can’t believe there aren’t any better answers out there ! I can’t work but have been denied disability of course so really am running out of hope. I haven’t even met a “ live”person with this awful illness to talk to and I am really struggling to figure out how to post here and “threads”;because I am not very computer savvy��anyways, once again thanks for responding to me, I only know you did due to an email I received, I haven’t found the post yet! I pray you make the right decision for yourself and feel better ,
    Love and prayers,
    DonnerS

    Comment


    • #32
      Re: IC is back after bladder removal

      thanks for responding back. I'm so sorry your having such pain and difficulty. I will include you in my prayers. Yes this illness is terribly difficult. I want this disease to be over for me. I want to have my life back before all of this. This disease is terrible. Saving my bladder is not worth it too me. I just am tired of the pain.

      Comment


      • #33
        Re: IC is back after bladder removal

        I too am so sorry for you�� saving my bladder isnt worth it to me either unless that alternative makes things even more difficult! It’s hard to remain positive when things are so negative,
        Thanks for replying and so glad I found the reply lol
        DonnerS

        Comment


        • #34
          Re: IC is back after bladder removal

          Where do you live??? I live in NC and am going to see Dr. Robert Evans this Thursday. He is in Greensboro with Baptist Hospital. It's about a 2 hour drive. Do you have a physician/urologist treating you now? Have you tried vaginal valium? I take that along with a litany of other meds daily. Gabapentin, elmiron, uribel, hydroxizine, amitriptalyne, ambien, marshmallow root, Desert Harvest Aloe Pills, curcumin, l-arginine, myrbetriq.....ugh. I'm sure my liver is cooked, but the pain is finally starting to wain. I was diagnosed in March of this year. I'm 46 and the uro's think it is collateral damage from having my left hip replaced in Dec 2017. The vaginal valium seems to help tremendously. I was taking all of the above meds except the vaginal valium. Once I started taking 10mgs at night, the pain started to lessen. I'm so sorry you are in such misery. But I've come to the conclusion that not many urologists really know what to do. I'm also going to see an integrative medicine doctor that I'll have to pay out of pocket for. I'm hoping she may have another perspective. I'm thinking of you.

          Comment


          • #35
            Re: IC is back after bladder removal

            One more suggestion - have you tried low dose naltrexone? My compound pharmacist told me he has multiple patients on it for IC. My 2nd urologist is open to prescribing it - it has been used in the past to treat addiction because it's an opioid inhibitor, but it is also a NERVE inhibitor. There are multiple success stories of women and men who have been given LDN and their symptoms dissapated. Google it. I know everyone is different (if I hear that one more time, I'm going to punch someone) but it may work. Compound pharmacists are truly the only ones who are current on the cutting edge medications. They are also not hamstrung by big pharma and BS hospital regulations/policies. If you have a compound pharmacy where you live, I would go by and talk with them. The reason I'm going to see an integrative medicine physician (who isn't covered by my insurance) is because she has a great relationship with my compound pharmacist and prescribes LDN to IC patients. I would never have found out about her if I hadn't met him. He makes my vaginal valium suppositories. I see him every month. Great man and truly wants to help people. Most compound pharmacists do.

            Comment


            • #36
              Re: IC is back after bladder removal

              Originally posted by DonnerS View Post
              Hi neohioic,
              Thank you so much for responding to my post. I’ve been dealing with “acute” IC since 2014 but really since the age of 12 but never diagnosed ( I’m now 57). I am going for a surgical consult with a urologist in July but really don’t know if this is an option to choose after reading so many stories of failure to heal the IC. Yes, I have hunners ulcers, they get fulgurated and come back and the fulgaration / hydrodistention only seem to aggravate things. I do daily instillations as necessary, a good week I can do 3 ( only because I am paying out of pocket for the instills and doing them everyday is too expensive for me) so I try to reserve those for the times I’m so sick, nauseous and in pain that I can’t function. I can’t believe there aren’t any better answers out there ! I can’t work but have been denied disability of course so really am running out of hope. I haven’t even met a “ live”person with this awful illness to talk to and I am really struggling to figure out how to post here and “threads”;because I am not very computer savvy��anyways, once again thanks for responding to me, I only know you did due to an email I received, I haven’t found the post yet! I pray you make the right decision for yourself and feel better ,
              Love and prayers,
              DonnerS
              DENIED DISABILITY I just wanted to jump in here and ask if you either have, or will be, appealing your disability denial. I sometimes think that it's a routine part of the procedure --- denying all requests. If you haven't appealed the decision yet, I think it can be important to have an attorney helping you --- and they don't collect unless you win --- so not really any financial risk for you.

              Sending warm hugs,
              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


              • #37
                Re: IC is back after bladder removal

                Hi amycampbell I live in Indiana and my urologist at this time is Dr Teresa Beam who has many patients with IC. I left my last urologist because she said there was nothing left to try and the one before that who I had been seeing for at least 10years said I couldn’t have IC because it’s”too rare”. I have run the gamut of meds also but have not heard of naltrexone and will def google it. Yes I have a compounding pharmacist who makes my Valium suppositories and mails the ingredients needed to make my instills. I mix them on my own now since insurance no longer covers anything and it’s cheaper to make the cocktail myself. However, marcaine is now unavailable, lidocaine 2% just became “reavailable”and sodium bicarbonate was unavailable for so long I now make my own at home! The Valium suppositories do help with bladder and urethral spasms but not with the hunners ulcer pain. Besides feeling all this pain it is very challenging to deal with all the medical and insurance related issues that goes along with disease, esp the financial part. Thank you so much for responding, it’s nice to not feel so alone with the illness. Good luck with the new integrative doctor, I hope you get some positive suggestions!
                Love and prayers,
                DonnerS

                Comment


                • #38
                  Re: IC is back after bladder removal

                  Hi ICNDonna,
                  No I haven’t tried to appeal the decision even tho I do have an attorney that was referred to me. I guess I’ve ran out of hope and just don’t have the strength to fight this anymore, sorry to be such a downer but I feel like I keep hitting brick walls and am just grateful to have the energy to do what I can when I can without adding anymore stress to the mix. Feel well,
                  Love and prayers,
                  DonnerS

                  Comment


                  • #39
                    Re: IC is back after bladder removal

                    DonnerS, Donna is correct, many get denied on their first time through. I would contact that attorney and at least give it a shot on appeal. You already have the denial under your belt now and hopefully the next time around it will be approved. Hugs and prayers to you.
                    Jolene

                    "Life is what happens when you are making other plans" John Lennon

                    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                    Information for Patients can be found here.
                    http://www.ic-network.com/patientlinks.html


                    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

                    Comment


                    • #40
                      Re: IC is back after bladder removal

                      Thank you dyno, have you had your bladder removed? I’m still hoping to hear from others who have done so to help with my decision. If I’m going to still have as much pain then it wouldn’t make sense I guess but then again at least the ulcers would be gone ... unless they can come back also? How long have you been dealing with this illness and how are you managing? There seems to be quite a lot of people out there just managing to get by even with their sick bladder!
                      Thanks so much for responding, will make the call to lawyer
                      Love and prayers,
                      DonnerS

                      Comment


                      • #41
                        Re: IC is back after bladder removal

                        Thank you Donna, I guess it’s worth a try. It seems you have had this dreadful illness for a long long time, you seem to have a positive attitude! I did too until I was told there isn’t anything really left to try, I just would like some sort of life back! Before this I was at the gym 5 days a week, considering becoming a physical trainer esp for the elderly. Now I can’t even work out myself! Not wanting to be depressing but after this last year, so many treatments and unnecessary surgeries now I just want to travel to visit my daughter and son who live so far away. Sitting is an absolute nightmare so car rides, plane travel cause such flare ups that I need days to recoup after them. And so, I am really considering this bladder surgery if it can give me some things back, like what I mentioned and food!!! Ahhh, chocolate, coffee, tomatoes,apples, bananas and the list goes on!! Thanks for letting me vent, and yes I go to a psychologist to do the same lol!! I hope you are feeling well yourself,
                        Love and prayers,DonnerS

                        Comment


                        • #42
                          Re: IC is back after bladder removal

                          No, I haven't. I have had IC for over 40 years and so I know that IC can be very troublesome for some people. I have my bad days and it is life altering for me but mine has not been that bad.
                          Jolene

                          "Life is what happens when you are making other plans" John Lennon

                          IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                          Information for Patients can be found here.
                          http://www.ic-network.com/patientlinks.html


                          Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                          Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                          "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

                          Comment


                          • #43
                            Re: IC is back after bladder removal

                            I think Dyno and I are on the same page. I was diagnosed 43 years ago --- and, while I feel good most of the time, I still have flares. I think of it this way --- everyone I know has illness at one time or another, whether it is a bad cold, flu, a broken bone, etc., etc., etc.

                            If you've only had disability denied once, by all means, I urge you to appeal. And when you win the appeal, you get back pay for the period beginning with the first denial.

                            Good luck!
                            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


                            • #44
                              Re: IC is back after bladder removal

                              Wow!! Over 40years��! I can’t even imagine standing this sort of pain for that long. I guess as they say everyone is different and no two IC cases are alike! Thank you for taking the time to chat with me, I really appreciate it
                              Love and prayers,
                              DonnerS

                              Comment

                              Working...
                              X