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I feel hopeless right now.

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  • #16
    Your post just broke my heart. I have many diagnoses as well and it's very hard to cope some days. I agree with everyone that you have not nearly covered all your options for treatment of the IC. Please get a second opinion, preferably by a doctor who actually knows how to treat the IC.

    I have Crohn's and know what it's like to live with a painful bowel disease, but I've never gotten so bad that I needed surgery. You definately have my empathy and my sympathy.

    Please read, read, and read some more...there is just so much help out there for all of us. Sometimes it just takes a while to find it. There are good, educated uro's who know how to deal with IC. I don't know where you live, but if travel is an option, there is a great doctor here in North Carolina that can give you a lot of hope. His name is Dr. Robert Evans.

    Never feel bad about venting....we all have to do it. You certainly have your plate full and I think that you must be a very strong woman to have made it this far!

    I wanted to address the vomiting with the pain meds....I take phenergan and sometimes reglan for nausea. It helps make the pain meds work more efficiently as well. Ask for one of these meds to take with your pain meds, and it might give you some sembalance of a life back. I can only imagine the pain that MS causes, and having IC on top of that must be literally devastatingly painful. Please look into these meds as they have helped to give me my life back, or at least a portion of my life back.

    Never give up, come here when you have questions or need support...this is a great group of people here that have so much compassion...I don't know how I would have gotten through some of the hardest days without this board.

    Take care and let us know how you're doing.

    Hugs, Sandy
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


    • #17
      Oooo-it's so nice to find someone out there with both MS and IC! We need to talk. I have so many confusing things going on with my bladder and urination (not being able to go and leaking) and I don't know if it's due to the MS or IC or both? Do you have issues like this?

      Also, one of my greatest MS problems is bone deep fatigue. Before the IC diagnosis I drank coffee just to function. Now of course I can't and there are days that I get up in the morning, eat my cereal and go right back to bed. Trying have any social life or even go anywhere is pretty impossible. My doc prescribed Provigil but I think that makes my bladder problems worse. Any experience with this?

      Tell me more about your MS and meds you're on. I'm on Lexepro, Zanaflex, Tegretol, Copaxone, Elmiron, Klonopin (at night), and Trimpex.


      • #18
        To JazzGirl and Sandy...

        The post about MS was for you Jazz Girl. Sandy, thanks for your message. I'm going to ask my urologistabout rescue instillations when I see him next. If it gives me relief I'm all for it. I'm already doing self-cath when I have to, so it couldn't be too hard to do an instillation. The pain med thing makes me crazy. I can't take Compazine, Phenergan and Reglan because I get nasty CNS side effects. I wonder if my Doc would give oral Demerol? I know it's an old drug, but when I had my colon removed back in the 70's it was the only thing they could give me.


        • #19

          I know that is how I felt when I saw someone with MS and IC. I am still kind of in shock that I have this to cope with also. I do have a lot of deep pain. It is hard to explain. It is unbearable at times and feels like it is down to my bones especially in my arms. I take Lortab for it and now for my bladder pain and pressure. After having solumedrol infusions a few months ago it seems to not be so bad. I had whooping cough and then went into an exacerbation. I was just getting over the exacerbation when the IC symptoms appeared. I was on Avonex a year ago and had an allergic reaction both pysically and pyschologically. It nearly killed me. It took six months to get over. I only did 4 injections. I also had a severe reaction to Copaxone 2 years ago. I do take Baclofen for my legs and that is all I take for the MS. Oh, I do have to take Ambien to sleep. I have been on Elmiron for 2 weeks now. I can not tolerate one in the morning it makes me so sick and drugged. My urologist said I was having a weird CNS reaction to it so we backed off and just did 2 a day for a week. I am trying to add another one the last few days but I just don't think I can take 3 a day. It is a challenge for sure to cope with both MS and IC. I have quit working and pretty much given up on a social life. All my family lives out of state. I try make the best of the place I am at each day but somedays it is an hour at a time. I so understand.
          I hope I haven't went on too much. I hope you are able to get another opinion about your bladder removal. I can't imagine.
          You take care and have a good week!


          • #20
            Oh Mortisha I forgot...Yes, I agree how do we know if it is the MS or IC. Sometimes by the time my brain gets the message I have to go it is almost too late and sometimes it just goes whether I am ready or not. I always blamed it on the MS but maybe not. It could be a combination of both.
            take care!


            • #21
              I would certainly get a second opinion from an IC expert. My urogynecologist told me at the very beginning that there were lots of "tricks in his bag" to treat IC.

              You didn't say what speciality your MD is. One thing to consider is how many cases of IC he treats. Bladder removal is an extreme treatment.

              I know you have mentioned MS. I am sure there are others here that have MS. Why don't you post on some other forums here and see if you can find support from MS ICers?
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation:

              Institute of Female Pelvic Medicine (J. Dell, My MD)
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas