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I think my instill fell out!?!

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  • Mc2203
    replied
    Great thanks. I hope things will get better with the uracyst over time. Flaring badly now as I have food poisoning (damn you KFC)! & the more Im physically sick the worse my bladder feels. Its gonna be a loooong night!x

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  • wizbe
    replied
    Uracyst

    Yes, I do uracyst treatments. Yes, sometimes it works well, other times not so well. However, it took about 12 - 15 treatments before I started to notice a huge difference. I am doing treatments again now - after 8 months of not doing them. I need maintenance work at the moment.

    Blessings,
    Wizbe

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  • Mc2203
    replied
    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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  • wizbe
    replied
    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

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  • sailawaygrl
    replied
    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

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  • Mc2203
    replied
    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

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  • i3luebyrd
    replied
    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.

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  • Mc2203
    replied
    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

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  • Mc2203
    replied
    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!

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

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  • Mc2203
    replied
    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

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  • waterflow
    replied
    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.

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  • Mc2203
    replied
    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

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  • Linda May
    replied
    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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  • Mc2203
    replied
    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

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