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Remission ending? Or a flare? Please help. :(

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  • Remission ending? Or a flare? Please help. :(

    Hello all, I haven't been on here in quite some time because I have been in (what I consider to be) a remission for I would say the past 6 months. I was practically pain free. I could go for up to 4 hours during the day without feeling the "urge/pain" to use the bathroom. I could sleep about 4-5 hours (with the help of vaginal Ativan/baclofen/lidocaine combo), get up to use the bathroom, then maybe sleep for another hour, get up once more to use the bathroom, and then sleep a tiny bit more. Live was getting better and most days, I forgot I had IC completely. I could eat whatever I want and was not in pain. Aside from doing instills, I felt like the girl I used to be before I got sick. It was absolutely wonderful. I was really starting to live life again. I want to lose some weight, and last Tuesday, I was feeling ambitious and motivated so I did 20 minutes on the treadmill and lifted a couple of weights. The IC is now back full force. *This one 30 minute session at the gym ruined me.... It would appear that, I myself, have caused the end of my remission and am devastated beyond words.* It is almost like I flipped an "ON" switch, and everything has come back. The urgency, frequency, unrelenting nocturia, agonizing pain, everything has returned. The Dr. increased the Ativan in my suppositories to try to "nip this in the bud," but it is not working. I feel the way I did at the height of my pain. I truly thought (probably foolishly) that I could live a normal, pain free life and was doing it...but now I have ruined it and the guilt is overtaking me. Does anyone have any suggestions as to what I can do to get back into remission? Is it too late for me to get back into the remission I was in?
    I would appreciate any and all advice. I am doing an instill a day now (lidocaine, heparin, sod bicarb, sterile water and 2 Elmiron capsules) and using the heating pad, and using the suppositories at night. Last night I even used 2 suppositories, and it didn't help much. It is now day 6 of this torture and I can't take it. Thank you so very much for listening.

  • #2
    Hi, Notgivingup0702 ~ I'm very sorry you're in such a state these days. I know what it feels like to once again think you have your life back so unfortunately we slip back into some bad habits, particularly with our diet as you mentioned. Are you back again watching what you eat? I really understand your desire to feel normal again, but in my case, drifting too far off the diet is one absolute no-no and will put me back to what seems like square one. Maybe the combo of all the "old life" things you tried ganged up on your poor bladder and you need to give it a good rest again. The good thing is that you've been able to find a great place of feeling good once again and I wouldn't doubt you're there again soon.

    Take care and keep us posted. I noticed you were's good to know you were having a normal life, feeling so good. You'll get there again!

    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
      Hi there,
      Have you been checked for infection? Especially since you're doing home instillations, it's important to check when you have a spike in symptoms. Other than that, if it's a muscle related flare, you might try alternating ice & heat, and perhaps ask for a physical therapy referral for pelvic floor work - just external PT can be really helpful. Of course, being extra careful with your diet now is a good idea too.

      If you were doing well for such a long time, I'd expect that you will get back to that soon! Be patient and kind to yourself, flares are part of IC. This will very likely pass, but do get checked for infection, even if this didn't start with one - there could be one now prolonging the flare.

      Wishing you relief soon,

      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.

      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest

      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!


      • #4
        Thank you Nanawaggs and Kadi so very much for writing and for your encouraging words!
        I did the at home test for infection on Sunday and it came back negative. I left work very sick today and went to a lab for the official urine culture, but my doctor and I both suspect it will be negative. I have never had a UTI during the past 2 1/2 years that I've had IC (and the pain I have now is the classic urethral pain that I had when I first got IC...I had almost forgotten how horrifying it is). I have now not slept more than 2 hours straight in over a week and I think that is the worst part of this whole thing.

        Since this flare happened within hours of my working out, my doctor and I are both leaning toward that being the cause of it. I was in PT for quite a while, but had to stop going due to finances. The doctor said today that she'd like me back in PT as soon as possible. I now have even worse insurance than before (that won't cover the PT), so I am not sure if I can go back. My doctor said my IC seems to be more "pelvic floor muscles" related, rather than diet. I am going to try to get back on the diet. I've been eating pretty much whatever I want for 6 months with no ill effects, but perhaps I should consider curbing that until this flare passes. I've been doing alternating ice/heat and using my vaginal suppositories over the past week, but not much help yet. They also called me in some Flexeril, which has historically failed, but I think she felt bad for me and wanted to call in something. She echoed your thoughts that if I could get better once, I can do it again....but she said it's going to take time and I need to know my limits and really get back into PT soon. Thank you both again so much for your thoughts.


        • #5
          I feel for you I too was trying to lose weight (post baby) a few years ago, and after being in 'remission' for about 10 months, ended up back at square one after using the treadmill, same as you..
          I find an elliptical does less damage to my IC (it's less impact), so perhaps give that a try at some point? usually I just stuck to the circut and did ok there..
          I'm back to trying to lose weight again after baby #2 and not daring the gym this time around..back to super safe IC diet and resting whenever I can to avoid flares..had a bad one yesterday for the first time in ages..
          rest rest and more rest..listen to your body, it really does pay to do that good luck to you


          • #6
            Thank you so much Braedley. Can I ask, how did you recover from your treadmill incuded flare? What did you do? And also, how long did the recovery take? I only slept 30 minutes last night due to horrifying pain, frequency and urgency. My dad had to drive me to the doctor's today because he was afraid I'd fall asleep at the wheel due to sleep deprivation. My uro-gynecologist is awesome, but she seems to be at a loss at what to do. We've tried so much in the past that didn' work. She ended up doing trigger point injections (which I never thought I'd have to do ever again) and an instill with Kenalog in it. I cried to her and said "Please fix me." It was just awful.
            I had to call out sick from work and can't believe I am going through this again. I don't know what is worse...the physical pain or the mental anguish I feel, having brought this back on myself.