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  • First Instillation...

    Is it typical to have a lot of bleeding after an instillation even if it was only lidocaine and elmiron in the solution?

    I'm ordering the regular instillation but on my last visit I did a rescue one just to get some idea what the regular therapy would be like. I was fine on the way home in fact I was able to avoid voiding for like three hours which is pretty good for me. But I realized when it felt a little uncomfortable I should void and then the effects of having had a catheter came into play so that was uncomfortable. I just don't know if the bleeding was only from the catheter irritating my urethra or if my bladder was bleeding for several hours afterwards?

    Also the new compounding for instillation is lidocaine and Hyaluronic acid. Does anyone have any experience with what happened to me above or with the new instillation medication?

  • #2
    Re: First Instillation...

    I haven't read that anyone has had a lot of bleeding. I have had a show of blood a couple of times in the time I have been doing instillations (more than 10 yrs) but never a flow of blood. I would consider that unusual and would make sure I called the MD.

    There are a number of post about instillations with Hyaluronic acid on the forum. My instillations are lidocaine and heparin.
    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


    • #3
      Re: First Instillation...

      I suggest you telephone your doctor's office, especially if there is still blood in your urine. For one thing, an infection can build rapidly in the bladder and can cause the urine to look almost like pure blood --- which can be very scary.

      Sending well wishes,
      Donna
      Stay safe

      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


      • #4
        Re: First Instillation...

        The blood went away the same day and did not return and I have not felt especially worse. I was able to see the whole of The Shape of Water without leaving for a break which is something I did for a while but stopped being able to do. However I've also had to go in the middle of a tv show. I had severe Hunner lesions when I had my Cystoscopy 2 years ago, and my doctor explained recently they may never fully heal and I believe that has a lot to do with the blood. It's why she and I both believe bladder distention would be more harmful to me than helpful. We were going to use the instillations that included heparin but the compounding pharmacy she contacted to order it said they no longer use that formulation and it's now replaced by Hyaluronic acid. Also I've had two completely unexplained incidents of my urine being full of blood with no infection or any sign of a bladder stone. They were a year apart but I've had a hard time getting back to a better more stable place since those happened. I am going to still try the instillation of the Lidocaine and Hyaluronic Acid. If that also causes a lot of blood and pain for later that day I will decide from there whether it was worth it. I wonder if using the Elmiron and it being a minor blood thinner had something to do with it as well. Thank you for pointing out that there are other posts about the Hyaluronic Acid instillations. I had assumed it was very new since this was the first time my doctor seemed to be made aware of it.

        Comment


        • #5
          Welp, I have posted about some of this in other parts of the forum but the doctor that did the rescue instillation ended up suddenly leaving and I've had to find a new Urologist. She had just gotten the ability to order Heparin for me at the pharmacy in Feburary. I am supposed to see someone tomorrow to both set up my treatment plan and I think get the first Heparin instillation. I didn't realize it because I was still in pain this morning and took pain medication and slept til the afternoon but the doctor that I saw yesterday that did the in office cystoscopy had my appointment set up for tomorrow with his partner in a different facility. They apparently called and left a message that just said they were calling about the appointment. I found the message about an hour ago. The appointment is at 9 so hopefully their office is open by 8 so i can at least get a call in to make sure they weren't cancelling it.

          I wasn't ever able to get any instills with Hyaluronic Acid. The pharmacy that would have sent me the kit was expensive and insurance does not cover the process because they said it's being used off label. At least that is what they said about the heparin. But 3 vials was like $54 so that seemed worth a try.

          I'll post more after I see how tomorrow goes. Thank you for being so responsive to my questions. In some ways while I've had this condition a long time and been in treatment for several years there is always so much more I feel like I have no idea about.

          Be well and safe.

          Comment


          • #6
            Well crap on a cracker....The new Urologist I saw sent me to see his partner that treats IC specifically. He can still see me for office visits, urine specimins but Dr. Shalata is who is going to handle my treatment plan. She said she will not do a bladder instill because she has never seen it help any patient ever in 10 years and she feels it leaves people in more pain due to irritation as well as more infections. And she saw that i'd had a urine culture done which did not show anything but she initially mentioned she will be doing a special urine culture to look at it I think she worded it as at the molecular level? I think several other posts have talked about some of the doctors doing a more specialized order on the urine tests and that sometimes finds things that are difficult. However, the new doctor will not prescribe any Valium orally she will only do suppositories which are not covered by my insurance. She also did confirm she can continue my use of medical marijuana, but she will not prescribe any Percocet or even Tramadol. She said I would need to see pain management or get another doctor I see for my other conditions to write prescriptions for the oral Valium and anything like Tramadol. i understand doctor's not wanting patients to be addicted, and I do agree that the suppositories (when they stay in) do target the pelvic area much better, but when I have other conditions that Valium does also help like Fibromyalgia and Sciatica that will take away from that treatment. She also is suggesting I take Myrbetric on top of the Detrol i already am taking. I tried Myrbetric before I even had the first cystoscopy and did not fine it was useful. But she says many patients find it works when you take them together to reduce the urgency and frequency. She also suggested taking hydroxyzine may be a good addition. i was advised not to add it because I already take an antihistamine. But for now she wants to just add one medication at a time to see if something clicks specifically rather than adding everything at once she was suggesting. She discussed Botox which I've always thought was just a scary option but she made a point to restate it later that i haven't tried it yet so i suspect she will push that option if the other options have not worked. So I kind of feel torn now. She said she does know my prior doctor and that she has not started anywhere else yet. So I at least know that much now. I like that she wants to try something different with combining two medications for frequency....that hadn't occurred to me. Actually, I had been told by my prior doctor that she never gave Myrbetriq to her patients despite that her colleague did before he transferred me to her. But he was not an IC specialist. And my doctor had agreed to give me the Detrol because i had it years ago when I had initial symptoms and I felt then it helped. And when I did try to stop taking it I did get worse. So I guess I will need to confirm if my Arthritis/Fibromyalgia doctor will take over the oral valium or if I have to see a different office for that through pain management. The better thing was that I was able to do the visit with her as a telemedicine through zoom so I did not have to leave the house so early. That was also a plus. That's all for now folks.

            Comment


            • #7
              It sounds like you have found a good doctor. One thing I know from my years of working at a major hospital is that only pain specialists are allowed to prescribe full time pain control that involves certain medications. For your arthritis/fibro, it could well be that you would be better off seeing a pain specialist.

              Let me know how you are doing. The world is a tough place right now with the Covid-19 pandemic -- are you able to get groceries, etc. to get by?

              Sending gentle hugs,
              Donna
              Stay safe

              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


              • #8
                I agree. It does sounds like you have found a doctor who keeps up on current treatments. I have used home rescue installations for 15 years. I did need them several times a week for a number of years but rarely need them now. The meds are good for 2 years and I actually have to dispose of the heparin/ lidocaine because they will go out of date. Instillations are the only treatment I have ever used and have successfully managed my IC. My instillations are just the basic recipe with heparin and lidocaine. I am on medicare so supplies are not covered. 10 treatment with meds and supplies runs about $100- $150
                Last edited by L. Thomas; 04-30-2020, 07:40 AM.
                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


                • #9
                  Originally posted by L. Thomas View Post
                  I agree. It does sounds like you have found a doctor who keeps up on current treatments. I have used home rescue installations for 15 years. I did need them several times a week for a number of years but rarely need them now. The meds are good for 2 years and I actually have to dispose of the heparin/ lidocaine because they will go out of date. Instillations are the only treatment I have ever used and have successfully managed my IC. My instillations are just the basic recipe with heparin and lidocaine. I am on medicare so supplies are not covered. 10 treatment with meds and supplies runs about $100- $150
                  I'm so glad you are doing well. Thank you for responding.


                  Donna
                  Stay safe

                  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


                  • #10
                    Hi
                    I have a question about bladder instills. I have been dealing with the same urologist for several years and feel she knows a lot about IC. A few years back I had a bad bladder infection and I had a rescue instill done at the hospital. Although it helped me for a while, I had a severe and one of the worst flares that latest around two weeks from this procedure. I have mild pain from sitting and am using noretriptyline-a low dosage. When I was speaking to my urologist today she left me know that I can always do instills as an option but quite frankly I am afraid to and feel like I am managing pretty well overall. I can't help thinking though this far into the whole IC journey why was I never given medication for frequency? Your bladder is a muscle and if it is overused it gets sore-to me it seems like common sense...anyways I have been prescribed Mybetriq and am wondering if any other people have had good experiences with this medication. Also is the main purpose of a bladder instillation to help with pain or frequency or both? It has never been explained to me. All I know is I have been through so many procedures at this point I only will do them if absolutely necessary. Thanks
                    Katrina

                    Comment


                    • #11
                      When Dr. Dell explained IC to me he said my bladder sort of lost its rhythm. Instead of contracting it quivered. Using the instillation let the bladder relax and regain the normal rhythm. My presenting symptoms did not include pain. It was a rather uncommon symptom of what I called the "walking farts". He diagnosed IC at the first visit and I began instillation treatments. A few weeks later IC was confirmed with a cystoscopy. Pain has never really been an issue for me so I really can't address the way instillations help with pain but they did reduce my frequency from 15-20 times a day to 8-10. I have never used anything except bladder instillations. Dr. Dell has always said this is a disease that could be successfully managed but does not have a cure.
                      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

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