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Update: I did another instill today

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  • Update: I did another instill today

    Hi Gals.

    Well, after pondering and pondering in my head, I decided to give the instill one more try. And also because the new urogyne I had an appointment with on Tuesday had an emergency and had to go out of town, well my appointment was switched to April 17th now. So since I was in all this pain, I guess I figured I would try the instill again.

    Well, when I got home I was only able to pee out 6 ounces, but I still felt really full so I had my hubby cath the rest out, which was about 15 and a half ounces left in there. I am feeling quite a bit of burning in my bladder now, and still only getting out small amounts of pee, but my stream seems a bit bigger. I hope to god it gets better and I can pee out all my pee and not have to cath again. Today when the nurse I had put the cath in to do the instill, she did real good, as it did not hurt to bad. Also, amazingly when my hubby cathed me for the first time ever, he did pretty darn good for a first try. I was amazed. I just hope I can start peeing better within a few more hours. I was able to pee about 5 ounces out an hour after he cathed the stuff out, but I still feel kind of swollen inside.

    I will see if I get any relief from the pain from this this time. I hope I did not make a mistake by doing this again. I just fugured that I better try it again especially since they pushed back my appointment at the new urogyne I am going to see. Anyhow, please pray that I get my peeing back to normal real fast. I will let you gals know how it goes. I hope my pain starts to get better soon. Thanks for listening.

  • #2
    I have been reading your posts about doing the instills. I have only had one instill done after I had my PST done and I didn't have the problems you have talked about. I hope that you are able to pee on your own and don't have to cath again. It's gotta suck to be in pain and not be able to pee too. Keep us posted.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3

      Glad you went ahead and gave it another try. I know you were pretty scared, but I am glad you tried it again. At least now, if you see improvement again after a few days, you wont have to wonder if it is a coincidence or not.

      I am also glad that your husband was willing to learn how to cath you. It sounds like he did a great job!

      I hope that this one brings you alot of relief and will help you get thru until you see the new Uro in a few weeks.

      Please give us an update again tomorrrow and again in a few days to let us know how you are doing and if the instill helped.

      Hope you feel better soon!



      • #4
        It sounds like your bladder capacity is very high if after urinating 6 ounces your husband was able to cath out an additional 15 ounces. I am lucky if my bladder holds 6 ounces on a good day. I am glad you decided to give the instill another try. I know I got worse with my instills (I use DMSO & Solumedrol every 3 weeks) and then all of a sudden they started to work. I hope you feel better.


        • #5
          Hi Gals.
          Thanks for replying. I am hoping the instills will start to help more also. I did notice a reduction in pain yesterday after the instill, just that I could not pee the stuff out. I dont know why that is happening though, since it does not happen to anyone else on here. That is the only part that sucks. I always get scared and think to myself, what if it damages my bladder and I wont be able to pee right anymore ever. I know, I always think the worst, it is terrible
          And yes, I know that one of you mentioned about how much pee I had in my bladder when my hubby had to cath the stuff out. I also thought that was alot of pee, at least for me it is. I mean when adding all of it together, I had a total of 22 ounces in my bladder. I think the only reason I was able to tolerate that was because I had a numbing agent in there, but I really did have to pee though, and could not get it all out and that is why I had my hubby cath it out as much as I did not want to do it, I had to.
          The weird thing is, after I cath the stuff out, I am able to pee better on my own after a few hours.
          There are times when I pee that I can pee out 10 to 12 ounces, but I try and make myself hold it as long as I can, so by the time I do pee, I have to go reeeal bad, and that is when I get the 12 ounces out, but most of the time my volume is usually around 6 to 8 ounces, and I usually pee every hour and half to two hours, and on severe days, alot more often. I also drink alot as to dilute my pee as if it is consentrated it hurts more.
          Anyhow, I just hope this instill will help my pain for more than just a couple days this time. I am suppose to do them every week. I just hate the fact that I cant pee afterwards. I get so scared that it will eventually make it where I cant pee anymore period! I wonder if any of these meds can damage a bladder like that?
          Thanks for listening Ladies and for all your replies. I really appreciate it. I will keep you posted on how things go and if the instill helps.


          • #6
            That's still a very good bladder capacity. I can only hold 6-8 oz after I've been sleeping (usually after an instillation or after my nightly dose of Elavil & Ditropan). Most of the time it's 4-6oz, and if flaring can be only 1-2 oz.

            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!


            • #7
              Hi Kadi.
              So is it odd for a person with IC to have a higher baldder capacity at times? Dont get me wrong, I dont always pee tha much in volume, especially not on my bad days. There are alot of days that I can only get out2 to 4 ounces and I am constantly going to the washroom. Also, there are times when I go pee, and then I feel like still have to go even after I went and will go again and get out a little more.
              So is it odd then for a person with IC to pee out larger amounts sometimes? I will say though, when I do pee out those bigger amounts, I usually reallly have to go bad. I also noticed that a few days after the first instill, I was able to pee larger amounts out. Maybe that helped in that respect, I dont know.