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  • Cant believe I have to do this..

    Hi guys,
    I am new to this forum and have IC for years and years ( since a teen, I think, if not before. ALWAYS had bladder issues) I was diagnosed in March 2008.
    Since then I have had 2 hydrodistentions done, the last being in OCt 2010, which did not work. I got NO releif at all and was very disappointed.
    My urologist has recommended home installations...
    My first attempt was on Wed night....It took 3 catheters but I finally did it, although when I took the syringe off the end of the catheta, all the med came back out. ( I now know to leave the syringe attached and remove the catheta and syringe together!)
    My second attempt was last night, and I finally got the medicine in! I am using heparin, lignocaine and water which i mix in a 50ml syringe (it makes about 20ml)
    My Dr said to leave it in about 15-30mins. I left it in longer as i didnt feel the need to pee, is it better to leave it in longer? Does it work better?
    I have been told to do this twice a week for 4 months but see my dr again in 1 month.
    I still cant beleive I have to do this to myself, I felt really sad about it after I did it. But, anything is better than living with this pain.
    I dont know anyone who has this condition, so this forum has been very helpful to know I am not alone. Most of you are American? Im from Australia.
    Its just so awful to be in pain all day every day, every single time I go to the loo..no-one really understands what its like.
    Hoping to meet you all and wanted to say that louanne, your step by step guide to installations really helped! thank you
    I had to google "how to do bladder installations" after my first failed attempt, and thats how I found this site!
    Im not as good at it tho, Im sure it;ll take a while to get the knack of it. I still feel very uncoordinated and have to do it on the bed, with a mirror and use alot of anaesthetic gel, I find it very uncomfortable (obviously)
    look forward to reading more about you all!
    Rebecca

  • #2
    The first few times can be difficult, but once you get the feel of how to do it, you won't mind at all --- and it's lots easier than driving to the doctor's office, finding a parking space, sitting in a waiting room, etc. I hope it helps.

    Sending hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    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.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Hi Donna
      Does it help to leave the med in longer?
      Or should I void within half an hour?
      Have you tried taking the tablets? My dr said that's a better treatment but because I have a surgery coming up and the heparin in the meds, I cannot take the tablets for some time after the op. He said it would be a 6 month treatment and the instillations are for 4 months.
      Have you tried any natural remedies?
      I was also wondering if you suffer from infections? I am very prone to them and I don't know if this is related tO IC or not. I'm concerned about more infections with the instillations, I try and keep things as clean as possible tho...
      Rebecca

      Comment


      • #4
        Rebecca,

        Pretty soon it will be second nature to you. I do them twice a day, every day. I don't look at it as an awful thing that I have to do to myself. I see it as a wonderful thing I can do for myself that makes my days much easier. I wouldn't want to have to go to the Dr all the time. Some Drs won't allow their patients to do them at home, and believe me, many wish they could.
        I have been told to hold it as long as you need, meaning when you have to go....go. One tip that might work for you... I sit on the side of the tub (facing in the tub) makes it much easier to "find" parts. lol
        Not sure what you mean about the tablets. Elmiron?? Does he mean your total treatment time will be 6 months? Usually unless you go into remission, we are treated for life. (don't panic, it isn't bad)
        I know in the beginning, after the happiness of knowing what I had wore off, I was heartbroken. Sometimes, I still am. I try to at least be thankful that while there is no cure, there are many things we can do to treat our symptoms. Knowing that makes it more tolerable. I am sorry that you are "one of us" but glad that you found us. It is so much better to have other's that understand what you are going through. I found a friend that doesn't live far away from me on this site.
        I hope I was able to help you some.

        Take care, and let us know if you have any other questions.
        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


        • #5
          Hi Sandra
          The dr said the course of tablets are a 6 month treatment, 6 months at a time. I don't know what they are but I know they have heparin in them.
          I'm from a small town and it took a long time to find a dr who knew anything about this.
          He only came to our area in 2008, which is when I found him.
          I was wrongly diagnosed while living in uk, and told my uretha was too small. I had a uretheral dilation which was the worst pain I have ever experienced post op!!
          My new dr has done 2 hydro distentions, the first was successful for about 4-6months but the 2nd saw no releif at all. This is why I am starting home instillations, there was never any talk of having it done at the drs...
          I was told by the nurse to lay down on the bed to do it...it seems to ease the pain of insertion when I lay back, as I get better I shall migrate to the bathroom. I find I am all shaky and almost teary after doing it, am sure I'll get more used to it!
          Do u drink slot of water? Howuch? My dr said that it can cause probs drinking too much, also.,
          I actually don't drink anything other than water( or urals) but I do have 1 coffee in the am.
          Do u find u are prone to infections? I have my urine tested regularly as it always hurts to go, often an inf can go unnoticed...
          So glad I going this site!
          Rebecca

          Comment


          • #6
            Luckily I am not prone to infections. I know that even makes things worse. I have never heard that drinking too much water isn't good. I know if you go way overboard that can harm you. I have always tried to get in a good 6 to 8 glasses a day. The more diluted your urine is the less acidic it will be, causing less pain. About the meds, Elmiron isn't heparin but it is considered a mild blood thinner and is similar to heparin. In the states we are given elmiron capsules and take anywhere from 100mg to 400mg a day. They are 100mg capsules. It can take anywhere from 6 months to a year for them to really make a difference in your bladder. They are thought to work by re-building the coating inside our bladders. Glad that you have a Dr that is helping you.

            Keep us updated,
            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


            • #7
              Hi Guys,
              I am happy to report that my 3rd attempt at an instillation was easy and quick!! I feel sooo happy about it, I had no one to share the joy with except this forum..
              I was able to insert the catheter on the first attempt and had no problems at all (except that I dropped my mirror at the end of it and it broke, so glad I am not superstitious!)
              In all, the medicine makes up about 15ml, and I was concerned about the medicine still left in the catheter at the end. Today I drew it back into the syringe and it was a bout 3ml. I know this doesn't sound like alot, but when the total treatment is only 15ml, maybe 3ml is alot?
              Do you think I should add another 10ml ampule of water to the mix, to dilute it more in the hope there is no medicine left in the catheter, or should I just not worry about it?
              Am just feeling so much better about having to do these instillations now, and cant wait to see results. As this was only me second successful instillation, and I have been told to do them only twice a week, I am sure it'll take a while to see any results.
              Does anyone know if this treatment helps with uretheral pain also?
              It such a shame it costs so much money for me tho, it cost me $190 for a months supply and because of the prescription size, I probably wont get anything back from my private health insurance. I wish it was cheaper and I could do it more often..
              Hope you are all well,
              Rebecca

              Comment


              • #8
                Congratulations!!!! I hope the instillations are the answer for you.

                Warm hugs,
                Donna
                Stay safe


                Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                Have you checked the ICN Shop?
                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.

                Patient Help: http://www.ic-network.com/patientlinks.html

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                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.
                [3MG]

                Anyone who says something is foolproof hasn't met a determined fool

                Comment


                • #9
                  I have been doing home instiallations for several years. There is a link in my signature that may give you some help on doing home instillatioins. There is an IC forum in Australia. I can keep cost down by reusing the catheter. Dr. Dell allows his patients to use a catheter 4 times. There are other MD that allow the syringes to be reused. I don't know if any allow you to reuse the needle. My med are generic so that keeps the cost down for me. I use lidocaine and heparin.
                  Dr. Dell also says to try and hold the instill for 20 mins. but if you are uncomfortable don't worry about holding it for 20 mins. You will get most of the effect of the instill within the first 20 mins.

                  3mm is not a lot. The instill formula will consider the amount that remains in the catheter. I use a 8fr x 15" pediatric feeding tube. There is some that remainds in this also. My instill is only 8cc. If you are worried ask your MD
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  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
                  Louann

                  Comment


                  • #10
                    Hi honey- i live in the UK but i was actually born in Adelaide I'm not suprised you were mis-diagnosed here, IC is still not very well known in the UK although it is getting better. I was very lucky to find my doctor, and even luckier that my IC is clearly "visible" during a cystoscopy- it can be easier to get treated when the doctor can "see" that there's somethign wrong.

                    I've been doing home rescue instillations for a few months- they do help control my flares. I try to do them before bed and keep the medication in over night if i can- it gives more relief the longer i keep it in. It feels uncomfortable when i first put the medication in, but after a while it starts to sooth the irritation. My instills contain 40ml heparin, 10ml lidocaine(1%) and 5ml Sodium bicarb, but i want to talk to my doctor about switching to 2% lidocain or marcaine.

                    I do my instills in the shower. I take my pain pills and my sleeping pills about half an hour before i start. Then I take a warm shower which helps my body relax and washes me clean. That way it doesnt matter if I have to poke about a little with the cath to find the right place. Then i turn the water off and sit in the shower stall to do the instillation. The hot water really does help everything relax so the cath goes in much easier, and i'm not worrying about any spills or mess. Anthor quick spray of the shower cleans everything up quick- then i get into my PJs and curl up in bed with a hot rice bag on my stomach.

                    I really hope they help you and you find some relief from your symptoms. Are you taking any other medications or using any other treatments? You can find lots of good ideas on here for natural therepies. I love those stick-on heating pads you can buy for muscle aches, and I blend ice cubes, vanilla ice cream and low-fat milk for a soothing drink when i'm feeling bad.

                    Hugs to you <3
                    I've just turned 27 and Dx with IC in Sept 09- Never had a single UTI in my life! My symptoms came on very suddenly and include frequency, urgency and a lot of pain and abdominal swelling. My cysto/hydro showed extensive areas of bleeding in my bladder.

                    Tried: Detrol, Oxybutinin, Lexapro, Codeine, Elmiron, Pyridium, Tramadol, Meptazinol, Temazepam, Diclofenac- all did nothing. Weekly Heparin/Marcaine instills and vicodin gave short periods of relief.

                    Currently:
                    *Strict IC diet- really helps control my frequency
                    *OxyContin helps my pain- i am so grateful!
                    *Heat patches- love them! since i can't sit in a hot bath all day- though i would if i could lol
                    Weekly Cystistat instills- don't seem to be doing much
                    Hydroxyzine (Atarax) before bed
                    Just learned to do home rescue instills- heparin/lidocaine/sodium bicarb as needed

                    "Every star is made brighter by the darkness surrounding it"

                    Comment


                    • #11
                      Hi all,
                      I'm very pleased to report that my IC seems much much better lately!!!
                      I've been sticking to the IC diet pretty closely(and am also on a diet to lose weight also and that makes it easier to eat fresh healthy foods from the IC list)
                      My home instills are going great and I actually look forward to them now!!
                      I am still going v frequently but have little or no pain. I still have a swollen feeling or am aware of my bladder but compared to even 2 weeks ago, I'm feeling great!
                      I hope it continues!!
                      I do hope everyone out there is feeling well.
                      As a note, I get some releif from taking aloe Vera caps, about 6 a day but have not taken them fir about a week now!
                      I'm so happy ATM, plus I've lost 2.6kg!!
                      Rebecca

                      Comment

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