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OK, Now I am having second thoughts

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  • OK, Now I am having second thoughts

    Hi gals.
    I think I am my worst enemy sometimes the way I worry myself so much. I am suppose to do the heperain cocktail instills this Thursday and the closer I get, the more I just want to back out. I am so worried about it making me worse. I mean already I read of one of you who has them and could not even pee afterwards. That is enough to have me running in the other direction. I dont need anymore problems added to what I already have.

    Also, some of you who have the instills say that you stay at the doctors office and pee out the solution before you leave. The nurse told me they put it in and send me on my way and told me to hold it as long as I can(1 to 2 hours if possible). I thought that was a little nuts. They are using heprerain,lydocaine,biocrabnate,and steroids. Wouldn't mixing all those meds make a reaction more likely to happen? I am so nervous, I am sorry for rambling on here. Also I am worried about the pain of the cath. My period is also due this week(was actually due Sunday), so it will be here any day. The doctor said it is fine to do it while on my period. What do you gals think? WOuldn't that put me at risk for infection? I am so confused. I need pain relief, but also I am thinking about the long term effects of having these instills. Am I being to paranoid here?

    SOrry again for babbling on, I just get so nervous about having anything done to me as I always seem to get a reaction or side effect.

  • #2
    Hey Jen, I am the same way - definitely my own worst enemy! I can whip myself into a frenzied state in no time flat, lol, they should have an Olympic "sport" for it, lol.

    I personally have not done the instills, but I know of MANY who have been helped so very much by them! I am sure they'll chime in with their experiences soon!!!

    And if you do have it done - I am sure you will do just fine!
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!

    *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.

    IC Diet Cheat Sheet:

    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS


    • #3
      I get that same cocktail you described twice a week. I've had 4 already. It is 'uncomfortable' the first time, but once that solution goes in its like INSTANT relief. They numb my urethra first and let is sit for like 5 minutes before doing the instill. They said there is very minimal risk for infection b/c everything is sterile. If you are nervous, you could put neosporin pain relief on your urethra throughout the day just to cover your bases.

      I look forward to them. I'm nervous b/c I go to once a week next week and I don't know if I can only do once a week!!

      I had no problem peeing, but I do hold the solution for the maximum 3 hour time.


      • #4
        I have mine done during my period too. You can use a tampon or pad. My uro said it didn't bother him. Think it bothered me more so. Don't let what I said where I couldn't pee a few times after having it done scare you from trying it. It might not even happen with you. All I had to do was go back and have it drained out and it was fine. Actually after having the heparin done I pee a lot. Forgot how much a normal amount of peeing is. I too am my worse enemy. I worry and worry and things never turn out as bad as I thought they would. Not even close. Maybe you could sit in the waiting room while holding it? I found it easier to sit and hold it then having to walk around at first. I am now able to hold it for up to 2 hours while walking. Please don't let what I posted to you scare you out of trying this. I didn't mean for it to do that.


        • #5
          Instillations help many people with IC.

          One thing to remember is that for every possible treatment option, there will be at least one "horror story" --- if the majority of people posting about a particular treatment have good things to report, try to ignore the bad one.

          Warm encouraging hugs,
          Stay safe

          Elmiron Eye Disease Information Center -
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          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.

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          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


          • #6
            I learned to do these instills myself at home they were so helpful!!! They are definitely a great source of relief for me and for many others. The cocktail is meant to be soothing to the irritated bladder, and in general it is.... but Donna's right, someone will always have an atypical reaction.

            I saw your other post where you were worried that they were like DMSO -- the answer is no, not at all -- it's a completely different solution and a completely different mechanism of action. I had a bad experience with DMSO, but I find the heparin-type instills extremely good for me.

            The catheter might hurt a little at first, but you should just remember to relax. Often, they use lidocaine jelly anyway to numb things up down there when these are done at the doctor's office.

            In your other post you mentioned you were afraid of infection -- it's always theoretically possible to get one any time something is put into the urethra (sterile or not -- the catheter tends to "drag" bacteria from the outside on in with it sometimes), but your doctor should provide you with an antibiotic tablet to take after the instill to help prevent that.

            As far as driving, I drive 20 minutes to work, and just this morning I did an instillation before leaving the house -- I was fine all the way to work, and held the solution for an hour (as is usual for me). With DMSO, there was NO WAY I could drive, but again, the heparin-type instills are just so soothing for me I can drive with them in no problemo

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.


            • #7
              Hi gals.
              Thanks for posting. Oh waterflow, you did not make me have second thoughts, it is just me, I always worry about having new things done to me. When I have to take oral meds, I am like that one person out of like a million that gets the rarest side effect for some odd reason. For instance, when I was taking ranitidine for my stomach issues, it sent me to the ER with tachycardia. Go figure.
              And thank you all for for the support. I appreciate it. You gals are sooooo wonderful and this group is a God send. This disease is just so scary. I have other health issues that are pretty scary also, but this one like just takes the cake for me, especially with all my other health issues with my stomach.I get nausea as it is and the pain from the IC just makes it so much worse. I know alot of you can relate.
              Well, I hope and pray the instills help me. I will let you all know how it goes. Thanks again ladies, you are the best.


              • #8
                I used to go to my Drs. office 3 x a week to get them. I did that for 4 yrs, but now I do them at home. Like many others, I usually get instant relief. (I'd do them around the clock if my Dr. would let me! )

                If you are worried about not being able to go afterwards, dont. If that happens the first time, then next time, ask the Dr. to mix some sterile water in it to add volume to it to help you urinate it out afterwards. There are ways around everything!

                I am sure you are nervous. Believe me, I was petrified before my first one! However, they made me feel so much better, I was sold on them entirely by about the 3rd visit. (I was so nervous during the first 2 that it made me tense up when they inserted the cath, which makes it uncomforatble.) But, once I saw that they made me feel so much better, I didnt tense after that, and then it didnt hurt. (Plus, he gave me a r/x of Lidocaine to apply 15 min before, so I would be numb when the cath was inserted.)

                I would definately ask for a R/X of Lidocaine 2% jelly to use prior to the insertion of the cath. Also, you can use it afterwards, if your urethrea is irratated from tensing up.

                I hope you get alot of relief from having the instills. Let us know how it goes! We will be rooting for you!



                • #9
                  Good luck and make sure you let us know how it does go for you. I think fear of the unknown is the worst, isn't it? I am a big worrier, too, and I nearly always build something up way worse in my miond than it ever ends up being.

                  Diagnosed August 2001

                  Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                  Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                  I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                  “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                  “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                  • #10
                    I do home instills of heparin, sodium bicarbonate, marcaine & they have probably saved my career! I rarely have to miss work due to flares now & I sleep so much better!

                    Wishing you a good outcome & some 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!


                    • #11
                      I do not know if you will read this before your procedure, but I get REALLY sick. I take the bus to do it, sucks on the way home, and I sit on the bus trying not to throw up. It does not last all day though. The only time it hurt for me was the first time, after I peed it was the worst pain of my life. But I think the nurse sucked, because the other times were fine. It did not hurt like I thought it would, just uncomfertable for a little bit.
                      Hope it goes well.
                      I bet if you tell the nurse how you are feeling, she can help you feel better.

                      I don't want to die, I just want to go to the bathroom.


                      I am 23 and have had IC for about 3 years now.
                      I have also had rheumatoid arthritis for about 21 years, I like to think I am used to pain.

                      I am interested in hearing from people with similar circumstances as I am in, like having IC and RA, being in college, etc. I feel it helps.