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Going on a year

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  • Going on a year

    Hello everyone,
    I've been diagnosed with IC for a year now. I have tried Elmiron, instillations, and am currently on a blend of glucosamine, loratidine, tagamet, neurontin, atarax, lorcet, and vesicare. These where working relatively well until I lowered the dose of prednisone I was taking for another illness. I currently have 27 health conditions including:fibromyalgia, relapsing polychondritis, type 2 diabetes, hypothyroidism, and IC just to name a few. Managing medicines and diets for all these different problems is getting to be a huge hassle. I was supposed to see my urologist in November but called their office begging to be seen sooner, and have an appointment on Monday. Apparently if you say you are ready to remove your bladder with a dull spoon they take you seriously, who knew? Prior to the current combination of meds that I am on for my IC, my urologist told me if they didn't work bladder removal was the only other option he could see. So needless to say I'm scared. I know the stress from worrying about that isn't doing me any favors either. I'm only 27 and can't imagine having to have my bladder removed at this point in time. No one in my family understands the pain this causes, and if I hear "at least its not a UTI" one more time I may strangle someone! I was very happy to find this forum, and hope to get to know you all.

  • #2
    Welcome Silvermoon ~ So sorry you're having such horrible times, especially at your young age. This is such a great place to express your frustrations, fears, questions, and get support from others who truly understand what we are each going through.

    Let us know how your doctor appt goes on Monday.

    Take care....Prayers
    Last edited by nanawaggs; 10-08-2011, 03:12 PM.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret


    • #3

      I think you still have many options before bladder removal - there are literally 100s of treatments (both medication and therapies) to try, so unless you're completely sure bladder removal is the way to go, I wouldn't think about it yet. I suggest looking through these boards in depth as to what worked for people with severe IC, as it sounds you have. I wish you the best of luck - I'm in the same boat, trying to find a treatment that works without too many bad side effects.

      As for your family, it's unfortunate that they aren't more understanding. I have an understanding mother, but my two sisters think my disease is a joke. I've had to deal with comments like "at least it's not cancer" and "just take some pain medicine" and "you're just making this up for attention". So I know what you mean, it cuts like a knife!

      Keep us posted

      Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

      Medical research addict.

      Likes: hot baths and naps with cats


      • #4
        I'd just like to add another to the IC Network family. I know you'll find a wealth of support and information here.

        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        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:


        Diet list:

        AUA Guidelines:

        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.

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


        • #5
          Thanks for the welcomes. I don't want bladder removal at all. If for no other reason than intubation makes my relapsing polychondritis worse. I just remember him telling me that was the only other option he could offer me at the time, and that was 6 months ago. So I'm hoping that he has some new ideas.

          Molly~Sorry you have the same problems with your family. My mom thinks I've somehow managed to con all of my doctors into thinking I'm sick because I look perfectly healthy. My father thinks if I just had enough faith in god that I'd be healed, therefore being sick is all my fault. And the rest just don't get it. But I'm am lucky I have an amazing husband who is there for me no matter what. Sometimes just having that one person in your life that is supportive makes all the difference in the world.


          • #6
            bladder removal

            Please don't do this until you see another urologist and have tried numerous treatments.
            Believe me, there are many potential problems that can happen with this kind of surgery, infection, bowel obstruction, and many others. Please research this before doing it. I have I>C. to and I'm just about to flip-out the only thing that helps some is the diet. Pyridium helps some with the bladder itself. then of course there's narcotics. I'm on the usual meds. I just saw a new urologist , I like him. but there's no super TX out there to help us. i hate this so much, I'm already on xanax for anxiety that I have had for years. I hate taking so many meds. I hate having to get up every night to self-cath 3-5 x a night. I miss so many foods I liked. I'm hopeful for a new Tx. coming someday that wil help us all. Don't think God doesn't heal you because of your faith, Anyone who has to deal with this everyday is a strong person in my book. Trust in God. He is Faithful. It's all about Him, not our worthyness. God Bless.


            • #7
              I am new to IC and just want to know why you have to self cath so much. Is it retention or does it give you relief. My main symptom is as my bladder fills it hurts so I go like 15 x a day and sometimes have spasms in the genitals and pain when I sit. I don't mean to get too personal, I just want to learn. thanks.


              • #8
                Saw my uro on Monday. He said I have a severe UTI, and prescribed an antibiotic for me to take. He also increased the dosage on my vesicare and tagamet. He gave me more lorcet for breakthrough pain (I'm currently on tramadol ER and neurontin daily.) He said he is finally trying the heparin, lidocaine, etc instillations and if this doesn't help we will try those. I go back in two weeks. I'm also going back on the IC diet to see if I can find food triggers that are making it worse. I already know a few of the foods that I can't tolerate. He told me he believes IC is autoimmune related and said he has several patients that have improved while on prednisone. He'd increase my prednisone, but due to complications from prednisone I'm having to go off of it.

                lizzie_71 I'm currently on 31 medications so I totally understand what you mean by taking too many meds. It gets frustrating. I'm pagan, but I am content with my life, even though I am sick. For some reason my father equates being content with giving up on being cured. I'm not giving up or giving in, but simply accepting my life for what it is now. No sense in dwelling on what could or should have been.


                • #9
                  hi Lizzie,
                  What does tagamet do? Also did you get any bad side effects from neurontin. I heard you can swell up from it. This is one I didn't try yet. Thanks for any help you can give.


                  • #10

                    Welcome to the ICN family!

                    I truly understand your frustrations! This disease is cunning and baffling. The only true support that I have found has been through this site and my doctor. Continue to research, ponder, and make the best decisision for your well being. You are deserving of a good life. When I first joined, I was confused and lonely. Today, I have found a path that works for me. Progress was slow but I have seen improvements since January 2010. Never give up on yourself!

                    Have the best day you possibly can. You are in my prayers


                    • #11
                      eliostnyc~ Tagamet is believed to help overproduction of acid in the stomach, and the logic behind using it for IC is that it then also helps with the acid in the bladder. As for the neurontin, I don't have any unusual side effects from it, but I'm used to seizure medications. I have epilepsy and have been on daily seizure meds since I was a baby. It does make me kinda tired, but like I said that was to be expected from a seizure medication.

                      passion4life~Thank you for the encouragement! It was just what I needed today.