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WOW! Had my first bladder cocktail!

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  • #16
    IHURTTOO,i guess you get relief from the instillation rigth?

    What about IBS,does the instills has an effect on that as well?

    This is why i'm here.I want to know if any IC treatment could reduce my IBS since i have permanent pubic burning.

    I think i have irritable bladder and irritable bowel and PFD.


    • #17
      Try your hardest to get them to approve the home instills!


      I voted for you again (I think it was the 3rd time?). I hope you win. I used to do the landscaping, gardening, lawnmowing around here, but I can't anymore. If I even tried to do any of it for 30 minutes, I would end up in bed for a couple of days (my Fibro has gotten worse). I don't really care about it anymore anyway. Re: the instillations...I remember getting my first 'cocktails'. They were like heaven. It had been so long since I had felt was like a miracle. I still call my nurse 'my angel'. I have 2 to 3 instillations in the office and I get about 4 or 5 to take home. If I couldn't do the home instillations, I would be in the ER every other day. They have literally been lifesavers. If your insurance gives you a hard time about doing them at home, write a letter to someone 'high in the ranks' at your insurance company and tell him/her how important the instillations are to your everyday life. It makes a difference between you being in bed crying all day and night or being able to 'take the medicine' (as you would with any other prescribed tablet or capsule) and be able to function as well as you can. I don't think insurance people understand how vital this treatment is for IC sufferers!!! Most don't even know what IC is! So frustrating. I'll be praying for a positive outcome for you.


      -Bladder surgery to correct reflux-'68
      -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
      -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
      -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
      -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
      PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
      -DX'd with IBS in 2000
      -Rhabdomyolysis in 2001 (has not returned)
      -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
      -DX'd with TMJ in 2000-wear splint
      -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
      -DX'd with Epilepsy -2000
      -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
      -DX'd with Fibromyalgia (2006)

      Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!


      • #18
        I wizzed thru the posts but didn't notice if anyone mentioned how to find out quickly if your insurance will cover the install....I made sure my insurance pd for the installs before I had them because I coudn't afford it otherwise. I had to get the code the Dr uses to bill the insurance, then you call your insurance with the code. They should be able to tell you what they cover. My insurance covers the whole thing--no co-pay or anything, but to do them myself I have to pay for "everything". My insurance doesn't cover injectibles. I figure they cost me about $12 each install--that's not to bad. Now if I could get them to work we'd be in business. I'm happy they work for so many people.


        • #19
          My doctor had to submit a letter of "medical necessity" to my insurance company in addition to the prescription for me to get the home supplies & meds covered.

          About the IC/IBS connection, Tip&IBS, I discovered that pelvic floor physical therapy helped both issues. Also, look in this website for the Heather VanVorous guest lecture or look up her website. I've followed her tips on soluble/insolube fiber & am doing a lot better with my IBS issues.

          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!


          • #20
            Thanks Kadi but Heather fibers makes me WAY TOO MUCH bloated like every fibers supplement in general.I'm trying a steak diet tonigth with no starch like patatoes who seems to makes gas worst.

            As for physiotherapy,i don't want to comment for now.

            I hope someone with IC and IBS will answer my question wheither instillations improve both conditions.

            Last edited by Tip and IBS; 04-22-2007, 01:47 PM.


            • #21
              Originally posted by JlGirl76 View Post

              Thanks for the heads up on the rescue instillations! I thought the ER could help a person out, but maybe not. I didn't sleep at all last night, but I am feeling so much better right now. It's been about 6, I made it through. I have been doing so great with no pain or flare/up's for months!! The next time I see my URO, I may discuss doing self cath treatments. It just sounds so strange to be doing that to yourself, but almost everyone on the message boards says it can be done and it's not that bad. I guess when you look at the pain a IC flare can cause or to self cath and feel better....yeah, self cathing, may not be that bad at all!!

              Thanks again for your advice!!


              Belive me IF I can learn to do instills I know that if you are motivated you can too. If you decide to try I'll be glad to help. It really sounded frightening to me at first and I didn't think I could do it. Boy was I wrong. It took 3 visits and I felt very confident. If you plan to continue instills I would definately check into doing them at home.
              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


              • #22
                Originally posted by Tip and IBS View Post
                IHURTTOO,i guess you get relief from the instillation rigth?

                What about IBS,does the instills has an effect on that as well?

                This is why i'm here.I want to know if any IC treatment could reduce my IBS since i have permanent pubic burning.

                I think i have irritable bladder and irritable bowel and PFD.
                I do get alot of relief from the instills. I would do them several times a day if I could...they help me that much! But, I am only able to do them a few times a week....(when I do them more often, my urethra gets too irritated. )

                As for the IBS part, it hasnt bothered me there. Though, like all IC treatments/meds, I have heard of some that couldnt do them b/c it sent their IBS into a tailspin.

                I dont really have the pubic burning that you do. I dont know if the rescue instills would help with that or not, but I think it would be worth trying it to see. When I do the instills, it totally numbs my bladder, but not the pubic area, but (sorry to be so naive), I am not sure how it would work for a man. But, I think it would be worth a try.

                In your situation, I think I would try to find a URO in a Pelvic Pain center, one that is in a practice with a Gyno. (Obviously, you cant go to a Gyno, but in my experiance, a Gynos have alot of knowledge in this area.) That's why I am thinking if you went to a URO at a pelvic pain center, he/she would have the benefit of collaboration with his/her Gyn coworkers. I may be wrong, but I really think that is where you will get the most help.

                In the meantime, I would definately give the Instills a try. Also, if you havent done so already, you might want to try taking some Antacids or even a med such as Aciphex to reduce acid. I have GERD, and take Aciphex for that. Prior to being on Aciphex, I had occasional pubic burning, (though not to the degree yours is.) My IC symptoms were also worse then too. For most ICers, when the urine is acidic, it causes pain and burning. I think it would be worth a trying antacids, a r/x acid reducer, or even a glass of water with a few Tsps of baking soda and drinking it. (I'll warn ya, it is pretty nasty tasting, but if acid is the problem, it will nix it within minutes! )

                I hope you can find the cause and a solution to your suffering soon!


                P.S. Have you ever tried Pelvic Floor Therapy? If so, how many sessions did you try and did you see any improvement with any of your other symptoms?


                • #23
                  Hi IC/IBS combo partner Amy

                  I did anal manip once but got even more irritated from it.
                  It irritate more the tip of my penis

                  As for Biofeedback,it was the balloon expulsion.
                  I don't think i need defecation retraining.

                  But i want to buy this balloon because i felt some interesting sensation in my sigmoid colon when she filled it with water.


                  • #24
                    I live in Southern, MD and I'm having the hardest time finding anyone to mix up my meds for home instills. The doctor that I go to is almost two hours away and it's getting very difficult to get to him to get my weekly instills...with work and all and plus the fact that I feel like cramp right after my instill, but I feel so much better the next day. If anyone has any more information on home doc suggested me mixing up the meds, but then said it wouldn't be sterile and didn't really want to take that chance...any information on home instills would be helpful as I'm at a lost on how I will continue my instills, which is adding to this already frustrating condition. Thanks!
                    Diagnosed with IC in 02/09
                    Current Medications: Elimron, Darvorcet, Lisinopril/HCTZ (for high blood pressure)
                    Prior Medication: BC, Elavil, Naprosen, Vicoprofen, Tramodol, Daypro


                    • #25
                      Re: WOW! Had my first bladder cocktail!

                      Hi! I was wondering if anyone else has had severe pain after an instill? I just had my first one and I am dying in pain.


                      • #26
                        Re: WOW! Had my first bladder cocktail!

                        Yes, they did. They did get easier over time though. DMSO and Elmiron were the worst.