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  • #1

    I feel hopeless right now.

    I was diagnosed with IC 4 months ago and have been on Elmiron with little result. I'm so tired of pain and going to the bathroom 20+ times a day and leaking all the time. I usually have to self-cath once during the night but I don't know if that's due to progressive multiple sclerosis (20+ yrs) or the IC. I also have an ileostomy from ulcerative colitis 30+ yrs ago.

    Anyway, the doc says that if I don't improve the next step would be bladder removal! I'm not a candidate for some kind of bladder reconstruction because I don't have any lower bowel. So that leaves another ostomy. 2 bags handing off my abdomen! I don't think I can cope with that. I'd rather just throw in the towel. Between multiple sclerosis, IC and the ostomy I already have, I just don't think I have it in me to cope with any more.

    The pain is really dragging me down. I can't take any opiods because I vomit my brains out. Utram and Darvocet don't work. I'm maxed out on Motrin and Tylenol. Any ideas?

    No coffee, chocolate, fresh fruits, what's the point of even trying? MS already blew my quality of life all to he**. Now it's daily pain (on top of the joys of MS pains), no good food, no coffee (which I used to help with the overwhelming fatigue I have with MS, plus it tastes good), and living in the bathroom. I'm so tired that I just want to stay in bed.

    Sorry to rant, but my poor husband dosn't deserve anymore of my health woes. This seemed a safe place to do it. I dont' know what I want from any of you it was just good to let off steam. I'm feeling hopeless and overwhelmed at this point.

    Meds:
    Daily injections of Copaxone for Multiple Sclerosis
    Tegretol for MS pain, Zanaflex and Klonopin for MS spacisity, Elmiron, Zocor, Lexapro.
    Tags: None
  • #2
    Sorry to hear your having a bad time.I just hope you can hang in there.Things can get better.I have some of the worse symptoms too.I also get tired of going all the time but a voice just keeps saying for me to hang on somemore time.
    You need a doctor thats going to work with you on this diblitating condition..
    Ic can be as bad as someone whos on dialylisis.Everyone on this board knows what I mean.
    Last edited by GoldSeals; 06-16-2007, 12:52 AM. Reason: Correction of sentence
    54 year old male
    Diagnosed with IC in 1994
    Had symptoms since 1992
    Three cystoscopies.One biopsy with hydrodistention.
    This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
    Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
    Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

    Comment

    • #3
      I am not a doctor, but I think yours is taking some drastic measures here on bladder removal, especially since you were just dx'ed. Elmiron can take up to 8 months to show improvement, and your dose can be 1 pill 2 times a day. or 2 pills 2 times a day, or 3 pills 3 times a day. There are also many other medication combos, Hydroxizine, prydum & urised for spasms the urised has a numbing agent good for flairs also. there is Elavil, Flormax (hope that is spelled right) there are hydrodistentions, dertrol, and other oral meds, even the interstim (which is a surgery, it is not for pain but for urgency, frequency, and rentention www.interstim.com)
      I am sorry you are having to go thru any of this. I really think you need to find another doctor for another opinion. All oral meds should be tried before the thought of bladder removal, and even before that the interstim.

      keep posting, and hope that you find a doctor who is not interested to pull the bladder out without trying to treat it.
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment

      • #4
        Originally posted by GoldSeals View Post
        Sorry to hear your having a bad time.I just hope you can hang in there.Things can get better.I have some of the worse symptoms too.I also get tired of going all the time but a voice just keeps saying for me to hang on somemore time.
        You need a doctor thats going to work with you on this diblitating condition..
        Its as bad for me as a dialylsis patient.Everyone on this board knows what I mean.
        What I meant to say is ic can be as bad as someone on dialylisis.I do not have to have dialysis done.Boy....see what atarax does.I just was zonked out last night.The combination of eating a tuna sub with onions last night.Onions make me very sleepy and the atarax just magnified it.
        GoldSeals
        Last edited by GoldSeals; 06-16-2007, 12:53 AM.
        54 year old male
        Diagnosed with IC in 1994
        Had symptoms since 1992
        Three cystoscopies.One biopsy with hydrodistention.
        This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
        Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
        Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

        Comment

        • #5
          lol goldseals.. don't post on meds is what I tell myself. we all have screwed up a post for doing that, nothing like giving yourself a good laugh the next day. I understood your post as you ment it to be. How much atra do you take at night? I take 75 mg.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment

          • #6
            I agree with Tigger Gal, I think it's too soon to jump to bladder removal right away.

            I'm amazed your doctor has not tried you on Elavil yet - maybe there's some reason you can't take it or something? Elavil helps so many IC'ers, although there is increased sleepiness when you first start taking it. It helps by "turning down" the pain signals in the brain so you don't feel the pain as much. Plus Atarax helps others to sleep, it might help you. And Elmiron can take up to a year to start working, and unfortunately doesn't work for 100% of IC'ers, so there is a possibility it won't work for you or isn't working for you at this point.

            Please don't give up. I understand how you feel, I've felt that way before, but by hanging in there and continuing to try different things, I'm finally free of pain and lately I haven't had to take any pain pills at all, I've been doing just great. I had tried Cyclosporine-A - an immunosuppressant - which gave me a remission, but then it hurt my kidneys, so I was really depressed about that, thinking I'd be on dialysis soon (my kidneys got better) and thinking, the pain will come back once I stop the CyA. Yup, the pain came back, but then I tried D-mannose (dietary supplement) (I think they sell it here on the ICN?) to help prevent the recurrent UTI's that I get, and I have no idea why, but as long as I take two doses a day (about 1 1/2 to 2 teaspoons per dose) I don't have any bladder pain or any bladder symptoms no matter what I eat or drink or do. I have no idea why it works for me - doesn't work for all IC'ers, only helps some of us - but by being persistent, I found something that helps me be comfortable, and I know that if you hang in there, you'll find something that works for you, too.

            The key is not giving up, and continuing to press your doctor to try new things. There are soooo many treatments for IC, one is almost surely bound to work for you, and there are new treatments coming soon, too - there is so much research being done on IC lately and so many new treatments being evaluated by the FDA, I can't even keep up with them. So please don't lose hope!

            Blessings and hugs,
            Lori

            Comment

            • #7
              Originally posted by tigger_gal View Post
              lol goldseals.. don't post on meds is what I tell myself. we all have screwed up a post for doing that, nothing like giving yourself a good laugh the next day. I understood your post as you ment it to be. How much atra do you take at night? I take 75 mg.
              I just started taking it again so its only 25 mg for now.
              54 year old male
              Diagnosed with IC in 1994
              Had symptoms since 1992
              Three cystoscopies.One biopsy with hydrodistention.
              This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
              Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
              Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

              Comment

              • #8
                Hi Mortisha,

                If anyone deserves a pass on ranting, you do! We all need to let off steam, and express our frustration from time to time! It seems you've had more than your share of health problems. IC alone is hard enough to deal with!

                I just wanted to agree with others by saying that I believe a second opinion, -even a third, is worthwhile before opting for removal. There are many things to try, if your other conditions will allow for them. Also that for me, it was a good 8 months of taking Elmiron before I realized my IC was way better than at the beginning.

                Welcome to the group!

                Vicki
                "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                Comment

                • #9
                  Sending you (((hugs))) and a hardy
                  Sharon

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/diet/


                  IC 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

                  • #10
                    HI Mortisha,
                    Welcome! I'm SO sorry you are having to go thru so much pain. It really sux to have IC and other health issues too.....believe me I know!!
                    I agree with the other gals....might be time to try a new dr. get another opinion. Life's too short to be in pain. I just posted on here that I've had one h*** of a time the past 24 hrs because my medication isn't helping much. I'm going to try hypnosis and massage therapy next week....alternative medicine.
                    I hope you find something to help you. Tiggergal listed lots of great IC meds you might ask your dr. about....lots of things to try before bladder removal. It sounds like your dr. is overwhelmed with your symptoms and doesn't know any other route to go....and there's many other routes to go. Find yourself good IC dr., quickly! Hugs! Roxie

                    Double Spinal Cord Stimulator surgery 8/09
                    Unsuccessful MiniArc sling surgery 12/07
                    Dx'd Hypothyroid
                    Dx'd Chronic Axonal Neuropathy & Myopathy
                    June 2007
                    Dx'd IC May 2006 (after suffering for 25+ yrs!)
                    First Cysto 1979
                    First Hydro 1981 (Many treatments since then!)
                    Collagin"Durasphere" injections for urethra
                    Gall bladder surgery Aug. 2004
                    Gastric Bypass Dec. 2004
                    Dx'd: Barrett's Esphogus July 2004
                    Dx'd: Vaginal Atrophy 2005
                    Bladder surgery 2000
                    Dx'd: IBS 2000
                    Hysterectomy (fibroids) 1999
                    Laminectomy 1989
                    Dx'd: Degerative Disk Disorder 1989

                    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                    Comment

                    • #11
                      Thanks to all

                      Thanks to everyone. I guess I'm just overwhelmed and tired with
                      all this. The MS is acting up now and I'm ready to just take a "sick day (or two)" and quit fighting everything for a while. My husband works out of town during the week so I'm thinking a day or two in bed doing nothing may be in order. Again thanks for listening.

                      Comment

                      • #12
                        Hi Mortisha,
                        Sounds like a day or two or three is just what you need! We all need to do that once in a while! I hope you get to feeling better! Roxie

                        Double Spinal Cord Stimulator surgery 8/09
                        Unsuccessful MiniArc sling surgery 12/07
                        Dx'd Hypothyroid
                        Dx'd Chronic Axonal Neuropathy & Myopathy
                        June 2007
                        Dx'd IC May 2006 (after suffering for 25+ yrs!)
                        First Cysto 1979
                        First Hydro 1981 (Many treatments since then!)
                        Collagin"Durasphere" injections for urethra
                        Gall bladder surgery Aug. 2004
                        Gastric Bypass Dec. 2004
                        Dx'd: Barrett's Esphogus July 2004
                        Dx'd: Vaginal Atrophy 2005
                        Bladder surgery 2000
                        Dx'd: IBS 2000
                        Hysterectomy (fibroids) 1999
                        Laminectomy 1989
                        Dx'd: Degerative Disk Disorder 1989

                        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                        Comment

                        • #13
                          hi mortisha:
                          Never feel like you are alone in all of this!
                          I am glad you have a forum to let you thoughts and feelings out.
                          You are certainly welcome to do so at ANY time~~~
                          There are a lot of things to try.
                          I have had IC for over 15-20 years. i have tried and done just about everything ....except the bladder removal and urinary diversion.
                          You can private message me anytime... to ask about other treatments or things that i have tried.
                          We all react differently. and a lot of us have multiple problems.
                          I also feel that way sometimes that my husband doesn't deserve all of MY health problems.... but remember...... marriage is for better or for worse....in sickness and in health~!~~~~~
                          I have a lot of health issues as well..... again please feel free to private message me at any time.....

                          Comment

                          • #14
                            Bladder Removal for someone that has just been diagnosed seems odd. If you go to the main boards you can see what other treatments there are for IC. Maybe you can talk to your doctor about some of them. You could also get a 2nd Opinion. It requires finding the right clinician (IC Specialist) who will be patient enough and knowledgeable enough to spend the time it may take to get to the root of the problem, and offer the intervention that will work best to give you some relief of your symptoms.

                            Kara
                            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                            I also have some journals of my journeys, past and some present at:
                            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                            Comment

                            • #15
                              Hi Mortisha,

                              I also have MS and was diagnosed with IC two weeks ago. I understand everything you are saying. It is overwhelming for sure. I have had a really rough two years with the MS and was just starting to feel like I had my life back when all this IC stuff started. I had a cystocopy and hydrodistention two weeks ago and the nurse at the surgical center told me she has seen quite a few MS patients with IC. I am curious if anyone out there has heard of many MS patients with IC. When I read your post I sure understood what you were saying. Hang in there. I hope you are feeling better.
                              Take care!

                              Comment

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