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  • #1

    Want a Removal despite the possible risks

    I just typed the following response on another thread but it is so important to me that I thought I should start a new thread. Please keep in mind that I know it isn't the "easy" route and there a good deal of risks and complications but I still feel this way:

    "It is so interesting that I ran into this thread. I hope someone is still looking at this and will see my post. I am frustrated as well about how these doctors refuse to even discuss bladder removal with you. I hear the same stories about how bad they are but then when I do my own research and look at other patient's stories, the picture is much brighter. I went 10 years without any treatment for my IC and then got a really bad cold this past Christmas. After that, I have been so bad off. I was just prescribed Elmiron, Elavil and Hydroxazine (spell?). After one dose of the first two (the evil Es as I like to call them) I had really bad reactions. I don't see how taking medicines that can cause heart attacks, coma, baldness, loss of vision, suicidal thoughts, strokes etc....are any better than just having the dang surgery. Why do they not let us make the decision for ourselves? We get the risks, we get the complications and the changes to our body because of it but if we are OK with that then why not just freaking do it? Is it an insurance thing? I'm so ready to go this route, bag and all but am afraid I will be forced against my will to suffer until I'm too old to enjoy life anyways. So frustrated. How can we talk them into it and how many stupid things do we have to try before they will? Seriously, what are all the stupid steps? Looking at the AUA guidlines isn't enough because people who have done all of those still get turned down."
    Tags: None
  • #2
    Re: Want a Removal despite the possible risks

    There are a few people who have posted here that have had the bladder removal. Have you read or found any of their posts? It sounds like they did have a difficult time finding a dr. who would go along with it but they were eventually successful in finding someone.

    Comment

    • #3
      Re: Want a Removal despite the possible risks

      I am right there with you! I have tried Many treatments for this IC to no avail. I have had it since 2005, but was dx in 2006. I have been thinking about bladder removal as well. But you right, every doctor I mention it to is against it. They also do Not have IC. There is always going to be risks with any surgery. I am not saying surgery should be a first line of treatment for IC, but I think it should be available to all who are diagnosed with IC since IC has no cure.

      I also took Elmiron and Elavil, had horrid reactions to both of them too. There are long term risks with some of these medications as well. I have read about some who have come down with IBD( crohn's disease and Ulcerative colitis which are not curable) from taking Elmiron. I took Elavil and my heart got messed up and that was on a small dose. I am sensitive to medications though so like I said, not everyone has the awful side effects. However when I had the issue with my heart when taking the Elavil, my doctor told me she does not like to prescribe it to any of her patients because it is known to cause cardiac issues!! I did not know this, my urogyne at the time did not tell me this. My friend who has IC, she has a heart issue and her cardiologist told her to avoid the drug as well. He even said it is known to cause heart issues in people with healthy hearts. So I totally hear you on the medication side of things.

      I think bladder removal should automatically be an option for anyone who is diagnosed with IC. I also was told that most who have their bladders out have bad outcomes, however, most people who I have talked to who had theirs out have had good results! I am sure there are some who have not had good outcomes to though. I think you have to make sure you have a VERY experienced surgeon. One who has done lots and lots of removals( usually a cancer surgeon).

      I think insurance is a huge issue. Most insurance companies will not cover bladder removal unless you have tried tons of other stuff first, and even then they can refuse it. You just have to have a good doctor who will fight the insurance company for you to try and get it approved. This disease is so frustrating. I just wish these doctors who are so quick to knock bladder removal could live a year in our shoes, I am sure they would think differently. For them, they just don't get it, I mean they are looking at it from their shoes( they feel good and have no bladder issues) so it is hard for them to understand why anyone would want to go through such a drastic surgery. They would understand more if they lived with what we lived with!

      Comment

      • #4
        Re: Want a Removal despite the possible risks

        Jen74: What do you do for your IC now? I'm just wondering what all else they are going to make me do now that I responds so badly to the typical pills they start with. The diet helps some but it still seems my bladder will do what it wants when it wants despite what I do for it.

        Comment

        • #5
          Re: Want a Removal despite the possible risks

          I know what you are going through.
          A few years ago i had exhausted the prescriptions and bled pretty bad from the bladder and i leaked pretty bad too.
          I gave uracyst instils a try and it took a good 6 months to heal me and then another 6 to really feel the results but it definitely helped a lot.
          So just wondering if you have tried any instils?
          Just wondering.
          We will all support you if you go through with the surgery and help you recover but just wondered if you have tried that route or any herbals? I know it sounds weird but cysta q really helped me also. Definitely herbs that coat the bladder such as gotu kola, slippery elm, and marshmallow root can help. And desert harvest aloe helped quite a bit while i was waiting for the uracyst to heal everything. Just not sure if you tried that yet.
          I hope you find relief whether it be in herbs or instils or surgery.
          Have had ic symptoms for 18 years, officially diagnosed 15 years....treatments--herbs, antidepressants, anticonvulsants, overactive bladder meds, painkillers, instils........
          Had endo but had to have a hysterectomy, now menopause yay
          Vulvadynia, ibs, acid reflux, raynauds, TMJ, and suspected auto-immune disorder of some kind
          Other things, heart defect and scoliosis

          Comment

          • #6
            Re: Want a Removal despite the possible risks

            I haven't done instils yet and am sure that is next. I go in for a hydrodistention on the 22nd of this month. He wasn't going to do that yet but then suddenly changed his mind after a pelvic exam (didn't say why). I guess I just feel like despite the medicines (even if they work), you are only putting a bandaid on it not getting rid of the rotten thing inside. I have researched the heck out of bladder removal and am more willing to take the surgical risks than I am the risks and side effects of all these drugs. I refuse to keep trying all of these other therapies past the age of 40 (32 now). I won't lose more life after that.

            Comment

            • #7
              Re: Want a Removal despite the possible risks

              Oh and I have also tried almost all herbal remedies, including Aloe/Marshmallow Root/Cystoprotek and all of them either increased my frequency drastically or caused more pain.

              Comment

              • #8
                Re: Want a Removal despite the possible risks

                I wish I could have a magic pill that would offer a cure for you. Not knowing what things you have tried, I don't really have much in the way of suggestions. I do, however, think that when we start new medications it can be important to add them one at a time so we will be certain which ones are a problem. Have you tried keeping a diary to try to find out if there are specific things that cause added pain.

                I hope you will find something that will help.

                Sending gentle 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

                • #9
                  Re: Want a Removal despite the possible risks

                  I wasn't sure if you had tried the herbals...
                  Maybe if theres someone here in your area, they can help you find a good surgeon.
                  I understand when you know when its time to remove something.
                  It happened to me with my hyster. I just knew the pain was different and nothing was helping so i got it done and they found that endo eating my uterus and arteries were all twisted and such as the ovary was glued to the back and the blood was starting to get cut off.....so it could have been a real bad situation if i waited.....gone necrotic and that is never good...
                  So i understand when you, yourself, know its time.
                  I hope you keep us posted and definitely see if anyone here is in your area knows a good surgeon.
                  Take great care and i wish you relief from this pain.
                  Have had ic symptoms for 18 years, officially diagnosed 15 years....treatments--herbs, antidepressants, anticonvulsants, overactive bladder meds, painkillers, instils........
                  Had endo but had to have a hysterectomy, now menopause yay
                  Vulvadynia, ibs, acid reflux, raynauds, TMJ, and suspected auto-immune disorder of some kind
                  Other things, heart defect and scoliosis

                  Comment

                  • #10
                    Re: Want a Removal despite the possible risks

                    Thank you for the support ladies.
                    Donna: I probably haven't tried enough to appease a doctor. I've tried Lexapro, AZO, those herbals I mentioned earlier, prelief, Elavil, Elmiron, Hydroxazine, several muscle relaxers, pelvic floor therapy, stress reduction, diet modification to the t. I assume the next thing is to try instils and maybe a couple of other pills followed by TENS and interstim. However, I think the interstim is only for frequency and urgency, not pain. I even tried some over the counter allergy medicines before they gave me the hydroxazine. AZO helps with the pain for awhile but it doesn't improve quality of life because it doesn't last long and you really shouldn't take it long term. What are some other meds they will likely make me try first?

                    Comment

                    • #11
                      Re: Want a Removal despite the possible risks

                      Hey teachhealth,

                      I at the moment am only taking 100mgs of Neurontin once day( cannot tolerate any higher amount or I get very bad side effects) and I take zyrtec daily but it does not really help my bladder at all, it just helps to reduce side effects I get from anything I else I take( like the neurotin and uribel when I take it).

                      I also take uribel, but get nasty allergic reactions to it. I even see an allergist to try and help with the reactions I get. I will say uribel really helps my bladder, but I am not sure how long I will be able to take it due to the side effects. I cannot take it every day, only when I have my period to help prevent UTI's I get and when I am dying in pain, but again, I get side effects so it makes it rough. My allergist just tells me to take it and just deal with the reactions as long as they do not become life threatening( i.e. swollen tongue, throat etc..). Basically that is all I take right now. I also am doing acupuncture. I am trying it for a few weeks to see if it will give me pain relief. It if does, I will try and stick with it for awhile. If I see no difference after 6 to 8 sessions then I will drop it. Basically I have tried almost everything. The only things I have not done are interstim which does not work at all for pain and hydrodistention which I am not comfortable doing. My urologist that I am seeing does not do hydrodistentions. She says they do Not help, they usually make things worse for a lot of people. She said there is no logic whatsoever in stretching and tearing a bladder that is already damaged and inflamed. I also have a pain specialist who is offering spinal injections if the acupuncture does not work, but I am not sold on that either. I don't feel good about someone injecting anything into my spine, it scares me.

                      I have no clue who I would even talk to about bladder removal. I know a lot of doctors seem Very against it. Even trying to find a surgeon to do it is likely going to be challenging, especially if you want a Highly reputable surgeon doing it. I think they expect your bladder to be like the size of a walnut and severely scarred before they will even consider removal. I think that is asinine honestly because to me it is all about quality of life. If a person is at a point where they have no quality of life, I think the decision to have surgery should Never be questioned. It should be left up to the patient entirely. That is my opinion...

                      Comment

                      • #12
                        Re: Want a Removal despite the possible risks

                        Originally posted by teachhealth06 View Post
                        Thank you for the support ladies.
                        Donna: I probably haven't tried enough to appease a doctor. I've tried Lexapro, AZO, those herbals I mentioned earlier, prelief, Elavil, Elmiron, Hydroxazine, several muscle relaxers, pelvic floor therapy, stress reduction, diet modification to the t. I assume the next thing is to try instils and maybe a couple of other pills followed by TENS and interstim. However, I think the interstim is only for frequency and urgency, not pain. I even tried some over the counter allergy medicines before they gave me the hydroxazine. AZO helps with the pain for awhile but it doesn't improve quality of life because it doesn't last long and you really shouldn't take it long term. What are some other meds they will likely make me try first?
                        If you haven't tried instillations, I suggest you give them a try. When I was at my worst, they definitely helped. I have a friend who does instillations at home in the morning and again in the evening and is able to live a close to normal life. Have you had a hydrodistention? That's what has given me my life. Some will swear by the TENS unit. Have you kept a diary to learn if some of the foods on the safe list are a problem for you?

                        Many, if not most, doctors will want ICers to try everything possible before radical surgery, which is not reversible. There are some instances where cystectomy is the only reasonable option, and some have found this to be the right option for them, but only if less severe treatments have been tried and failed.

                        I sincerely hope that you will find something to make you feel better --- and if surgery is the only option left for you, I hope it works well for you.

                        Sending gentle 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

                        • #13
                          Re: Want a Removal despite the possible risks

                          AS someone who has her bladder and urethra removed due to IC I can sympathize with what you all are feeling. I can also see why doctors are so agaisnt doing it. I am one of the lucky ones who does well, BUT I have had my share of issues relating to several bladder surgeries.It is not an easy surgery, and you need to consider that beside the urinary system they are also operating on the GI tract. For some the recovery can be very long.I encourage you all to try everything possible before you consider taking out your bladder. the person wh does the surgery is most commonly a urologist, though some general surgeons will also do it.

                          Comment

                          • #14
                            Re: Want a Removal despite the possible risks

                            Judith56, If you wouldn't mind sending me a pm and talking about some of the complications you have had and everything you tried before the surgery I would appreciate it. Even though my doctor hasn't gotten to that point yet, I want to be as knowledgeable as possible in case it comes up.

                            Comment

                            • #15
                              Re: Want a Removal despite the possible risks

                              So I had my cystoscopy with hydrodistension yesterday. Wow the pain was unbearable when I woke up in the hospital. I couldn't pee and I thought my spine and pelvis were shattering into bits. They gave me all the liquid IV pain meds that they could an no difference. They finally gave me a NARCO pill (heavy duty) and it helped but ended up just lying on the hospital bed peeing all over myself because it hurt too much to get up and go to the bathroom. I had a two hour trip home afterword which was brutal but they gave me these huge diapers so I could just pee then and there. I couldn't unless my husband stopped and let me stand and lean forward. I'm sore today but ok I suppose. Burn like crazy. The worst thing is Evans told me that I held 700cc which isn't the best but isn't bad at all (I pee like 50 times a day so though I may hold this I don't functionally hold this in my opinion) and that I didn't have hunners but had some glomerations but he considered me to be mild/moderate IC and I was NOT a candidate for bladder removal. I cried and he couldn't understand why I thought what he was saying was bad news. He didn't understand why I considered a bladder removal getting my life back. I think he got mad at me. However, no treatments we are trying are working and I'm afraid that even if nothing works for me that he will leave me with no life and never take this thing out. Would he do that to me just because I'm holding more urine than a walnut sized bladder and visually he thinks I'm mild but nothing works and I have no quality of life?

                              Comment

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