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  • I think my instill fell out!?!

    Im confused- I just went for my 1st instill of Uracyst. The nurse put local gel in a syringe into my urethra to numb the area.. Ive had this done 3 times before but usually, I always feel a sting as the catheter goes in. This time I didn't so I said- ooh it normally stings but that wasn't too bad- so the nurse said, hang on let me just check the caths in the right place. He fiddled around a bit and to be honest- it did feel quite high- as if it was ok. Then he did the instill and I felt a cold sensation inside my bladder (I think). He then said OK your alright to go and he said you might want to wipe cos the numbing gel will leak a little. When I stood up- a gush of liquid came down and my knickers felt really wet. This hasn't happened both times I've had the local numbing gel before so I said to the nurse- I think the instill has just run out. He said no- it will be the gel. Ive just done the 2 hour drive home and then went to go to the toilet. Again, before I managed to get to the toilet- runny liquid came flying out. So I'm wondering if it was more of the numbing gel which had melted as Id been sat in the car or whether it's the instill Ive never had one before- so Im not sure how it should have felt. Maybe the cath was thinner than the previous 2 I've had- it was 12 inches and that's why It did not hurt. Or maybe he just didn't put it in the right place

    Nothing is ever straight forward!!! If it was the instill, then they owe me an extra one because I only get 6 until I go onto monthly!!

    Any advice would be greatly appreciated!!
    Sarah

  • #2
    I know from doing home instills that the one time I did "miss" and put it in the wrong place exactly what you said happened is what happened to me. It does sound strange that he had to double check and then warned you that something might run out. It almost sounds like he didn't want to admit that he made a mistake. I have never had an instill immediately run back out from my bladder. I would call and talk to the Dr, tell him everything that happened. I hope they do the right thing for you.

    Sandra

    You said this was your first uracyst instill but have had two other instills, what were they? I can see that the numbing gel might have helped the stinging, but your sphincter muscle at the openning of your bladder would keep the instill from running out, even if you are slightly numb. If it was the numbing gel, that means he would have used an awful lot of it. Personally, I think it was the instill, based on my experience.
    Last edited by sailawaygrl; 05-24-2011, 09:48 AM. Reason: added extra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      Hi thanks Sandra,

      Yes, I agree- I'm pretty sure it was the instill coming out. I haven't had an instill before, I meant that both times I've had a cath inserted for a cystoscopy and then a urodynamics- that I felt a pinch as it went in. I am really annoyed because I had been so excited to try the instill and it's like an hour and a half's drive to the hospital and it was just a letdown...

      I'm nervous now that I will be a treatment down because I am supposed to have 6 weekly instills then go on to monthly. My sister said I should insist that I get a replacement one so that I've had the recommended amount. But even though the treatment is on the NHS-I think it is probably still expensive for them to buy and so I don't see me getting the extra one. He probably won't admit he did it wrong anyway.

      Another week's wait now till my next one- feel's like such a long time

      Thanks for your help!

      Sarah

      Comment


      • #4
        Same here I have had numerous instils and they never ran out. He owes you an extra instil, also I would ask for a different nurse next time.
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        </center>

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        • #5
          Thanks Linda, my mum has just come home and agreed that they owe me one and we are going to get it!! She told me that if they are reluctant to give me an extra instill- she will pay for it!... good old mum

          I am pretty sure that this nurse is supposed to be doing all of my instills. Great... next time- I'll be more cautious to make sure that I know it feels right.

          My heads spinning with it all- time for bed I think...

          Thanks for the advice

          Sarah

          Comment


          • #6
            In the beginning when I had the heparin/lidocaine instill done it would run right out of my bladder (around the cath) and on to the table. Nurse told me I am supposed to hold it in. I told her I was trying to. My bladder was kicking it out on its own and I had no feeling the bladder was doing that. Also, when I moved or tried to stand up the heparin came out on its own. So it could be your bladder is spasming out the instill without you feeling it. I did have them put the cath in the wrong place once and it came out that time too.

            Comment


            • #7
              Ok thank for advice. I was cleared of OAB last week though- so do you think my bladder would spasm if I do not have this?

              Thanks.x

              Comment


              • #8
                I don't have OAB either. Think it took 2 months before I could hold it without anything leaking out.

                Comment


                • #9
                  Uh oh- hope that doesnt happen to me! Im glad you were able to hold the instill in the end though..

                  I better consider that my bladder might have spasmed it out before I go in the Drs office- shouting the odds at him!!

                  Thanks!

                  Comment


                  • #10
                    Had my 2nd instill...

                    Hi guys. I feel a little guilty blaming the nurse because I now think it was my fault that the instill came out!
                    I was not told that you have to hold it in the bladder, I just assumed that it would stay put on its own because I never have leakage or anything. He told me to hold it in as I would if I really needed to pee. I did and it didn't run out...
                    It did feel a little uncomfortable for a while but then I didnt have to hold so much and it still didnt run out.

                    Thanks for all your help in my moment of panic!!

                    Sarah.x

                    Comment


                    • #11
                      It was definitely not your fault. You don't have to manually "hold" it any more than you would normally. It sounds like the instill went in the vagina. It's very easy for that to happen as sallawaygrl said. I have also accidentally instilled into my vagina. It will just run out if that happens because there's nothing to hold it in.
                      Diagnosed with IC 2002: started IC diet

                      Elmiron, Atarax, and Elavil started in 2003 stopped in 2005

                      PTNS tried in 2009 with no change in symptoms

                      DMSO tried in 2010-2011 with some increase in pain then some reduction of symptoms

                      Hydro in 2003 and 2007

                      Heparin cocktail instills from 2005 to 2010

                      Trying Uracyst starting November 2011 with some success

                      Remission 2014 - present but still using Uracyst every few months and mildly restricted diet (no tomato, vinegar, wine, or citrus)

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                      • #12
                        Thanks- another nurse has done the rest of my instills and she and I now both think that it did indeed fall out as it wasnt in the right place. She has given me an extra one! I always make sure I need to pee now (which isnt hard!) so that it drains and the cath is defo in the right place!

                        xx

                        Comment


                        • #13
                          Glad to hear that! If you are having to walk around squeezing to hold it in.....well, could you just imagine! If we all were walking around like that, what a sight that would be. I know that when you said it felt cold it didn't make sense. I don't think the inside of our bladders have that sense like inside our vagina. I know when I instilled into mine it felt cold as well, that is the first thing that tipped me off, then I stood and you know the rest.
                          I am glad that they resolved the issue, and that another nurse handled the rest of them for you. Are they helping you?

                          Sandra
                          Link to the patient information, everything from What is IC? to Disability
                          http://www.ic-network.com/patientlinks.html

                          American Urological Association Clinical Guideline
                          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                          Comment


                          • #14
                            I'm pretty sure the instill came out too! I have had that happen to me twice and it happened the other night when I was at Emerge. I kept saying to the male nurse - "I think you are in the wrong spot!" and he kept saying there's no return coming from the Catheter and then he said you just peed so it must be right. He put the liquid in and I felt it go everywhere... then he said - "Oh no" and I said, "I told you!" I can laugh at it now, I didn't laugh at it then. So yes, I think it was the instill.

                            Wizbe

                            Current Meds:
                            1 Elmiron 100mg 3x a day
                            1 Cimetidine 300mg 2x a day
                            4 Gabapentin 300mg 3x a day (3600mg)
                            1 - 2 Atarax 25mg at bedtime
                            1 baclofen 10mg 3x a day as needed
                            200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                            2 belladonna and opium suppositories as needed for pain daily.
                            Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                            I have tried but failed -
                            lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                            [/I]

                            Comment


                            • #15
                              Thanks for the responses guys! Sandra- the instills have helped my frequency- i can sometimes go 3-4 hours. Although i had a great 5 days after my 5th instill then flared badly & now the 6th instill hasnt been as good. Wizbe am I right in thinking you use uracyst? Did you find your symptoms waxed & waned as mine are in at beginning of this treatment?
                              I am hoping I will improve with the monthly instills.

                              Thanks. Sarah

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