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  • a question about bladder instillation

    Hi everyone,
    Today I had my first instillation and it wasn't that bad. I am suppose to keep a record of my symptoms for two months. It was a mixture of heparin, lidocaine and sodium bicarbonate. I held it in my bladder for an hour. I was wondering if other people have had this done and it it helped their IC symptoms-pressure, frequency, pain? I am dealing with a bladder infection and as of right now have no idea if the antibiotics are working, I used a powder called monucel-which was prescribed to me as I have sensitivities to antibiotics. Apparently it takes several days to take effect. Wondering if anyone else has used this product and what they experienced? Thanks, I am so glad this forum is here.
    Katrina

  • #2
    Re: a question about bladder instillation

    I tried it for many times. Not too much difference. I stoped because of infections I got from catheterization. Every one is different.

    Comment


    • #3
      Re: a question about bladder instillation

      I was getting them. At first I was getting alot of relief right away, then it would wear off. Then it became where it made things worse before they got better. It has been 3 weeks since my last one. It seemed like things have been improving significantly lately but it could also be the fact I increased my amitryptaline from 25mg to 50 mg.

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      • #4
        Re: a question about bladder instillation

        I have used an instillation with those ingredients since 2004. It has always controlled my symptoms. I do home installations as needed. Over the years the need for installations has decreased and only need a few during allergy season. When Dr. Dell found how expensive sodium bicarbonate was he said a number of his patients left it out and had no ill effects. I have used lidocaine/heparin without sodium bicarbonate for 7 or so years. Everyone responds differently. This particular installation is 100% effective for me.
        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

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        • #5
          Re: a question about bladder instillation

          I can get one from my uro on 03/30/18, but I didn't want to get one because on 04/02 I see a specialist who is going to scope me again and do uro-dynamics. I didn't want to be feeling all great and normal when that is done. I wanted this guy who is doing this to see any problems.

          Are you on elmiron by the way? I"ve been on it now for nearly 6 months (5.5 months maybe). I might be improving from when I was first diagnosed but it is hard say.

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          • #6
            Re: a question about bladder instillation

            Hi Neohioic,
            I am on Elmirion and have been for a few years. I did try reducing at one point as my urologist suggested it, and went back on as I was was in pain. I was sent to a specialist at the recent hospital as my urogyno felt it might help me trying the instillations. I am not sure what is going on with me at the moment. I had the instillation on Friday, would feel a bit better for a day, then bladder pressure and burning. I don't think it helped that I had an instillation done while I had an infection. Yesterday I thought my infection had come back, clear UTI-going back to the specialist tomorrow. Today bladder pressure, soreness in the urethra area. Prior to my UTI I have never had this much pressure on the bladder, very uncomfortable and the sensation of needing to go to the bathroom is unpleasant. I am not sure if I am in a flare. I am really sensitive to medications-and I know even with antibiotics I will usually react after a few days not immediately. I am not sure if you are able to hold back on your instillation, as it might effect your scope, I am not sure though. Have a good day

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            • #7
              Re: a question about bladder instillation

              thanks for getting back to me. I'm having a pretty rough day with all types of pain. I didn't get the pain that sends me into a panic that is traumatic. I just had lots of quezzy crampy feelings, and twinges of irritation stabbing pain. I'm going to need to get an instillation on Friday. I gotta try to get back on track. I was really doing good for a couple weeks. I still had pain each day but for the most part it was very tolerable and each day most of the time I felt great (like normal). I"m thinking more and more about bladder removal. I know it's a terrible thought, but I can't live this way for ever.

              Comment


              • #8
                Re: a question about bladder instillation

                Hi Neohioic,
                I am really sorry to hear you are having a hard day. IC is challenging to deal with. I don't know what treatments you have been looking in, if you have made changes to your diet, or are on any supplements. It sounds like a good idea you are getting an instillation. Bladder removal sounds like a last resort. Hang in there.

                Comment


                • #9
                  Re: a question about bladder instillation

                  yes, I've been watching my diet closely for 6 months now. I drink no coffee, tea, soda, anything caffeine, alcohol. I drink close to a gallon of water most days. Never less than 1/2 gallon. I've had physical therapy which at first seemed to help alot, but lately not doing anything except maybe a little temporary relief. I can no longer get internal trigger point therapy because I've developed and anal fissure that won't heal. I suspect it won't heal because I'm on elmiron which is a mild blood thinner. I'm strict on eating only IC friendly things and avoid anything acidic. I do 20 minutes of heavy stretching each night that my physical therapist taught me. These are the same stretches from the book headache in the pelvis. I follow that up by taking a 30-40 minute sitz bath where I relax and pray. I take so many supplements. i take tumeric, glucosamine with msm, glucosamine with chondroitin, aloe gel caps, d-mannose, corn-silk, quercetin with bromelain, hylraonic acid, and pumpkin seed oil, and marshmallow root capsules.

                  I take 50 mg amitryptaline at night, 25 mg hydroxazine, and elmiron 3x's per day. I take tramadol as needed. A muscle relaxer as needed, tylenol 3 as needed.

                  I will say this, I've been sleeping great at night for over a month. My stretching and sitz bath routine before bed and taking so much elavil and hydroxazine calms everything down. I sleep like a baby. And the first couple hours of my day are low pain. But slowly the pain starts. I sit in an office and sitting seems to bring the pain out more. I have the ability to stand in my office as I have an adjustable desktop. I'm often too tired to stand though. Dealing with this pain and all the medication I'm on wear me out. I work out on the weekends which is not as much as I used to do.

                  Every day is a challenge. I"m just sick of it. I don't want to die. I need to stay alive for my wife and kids, I just am tired of dealing with this terrible disorder. I think I'm going to seriously consider bladder removal after dealing with this for about 1 year. I"m only at 6 months now. I have some hope. I had 2 weeks recently that were probably my best 2 weeks in 6 months. Maybe I can get buy on just getting regular bladder instills that would keep my symptoms in enough of a check. I've had 15 instills already. I'm sure there are many people who have committed suicide from this pain and people didn't even know what happened. Years ago before the internet and as many treatment options I'm sure people just killed themselves and nobody knows what happened to them. This illness is terrible. The pain is annoying and bad. It can make you remove your bladder if you want to live.

                  Comment


                  • #10
                    Re: a question about bladder instillation

                    Neo,
                    Sorry you are experiencing this continued pain. One thought I had is could you possibly increase your Elmiron dosage? I know Uros that routinely put male patients on higher doses due to body mass. Not uncommon to take up to 6 pills a day (2 pills, 3x a day). I think Dr. Parsons suggested this. Just a thought.

                    Comment


                    • #11
                      Re: a question about bladder instillation

                      Originally posted by neohioic View Post
                      yes, I've been watching my diet closely for 6 months now. I drink no coffee, tea, soda, anything caffeine, alcohol. I drink close to a gallon of water most days. Never less than 1/2 gallon.
                      Several years ago my urologist told me that too much water is as bad as two little --- my daily goal is six cups, but up to eight is okay for me. You might want to cut back a little on the amount of water, especially if you're getting a lot of fluids in your food.

                      Warm 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

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                      • #12
                        Re: a question about bladder instillation

                        thanks for the advice. I will cut back a little on my water intake. I"m a little concerned about increasing my elmiron. I've noticed some easy bruising a couple times. I also notice some difficulty with certain things healing. I think elmiron is a mild anti coagulant. I weight about 175 pounds so I"m not the largest guy out there. i've got tons of problems now. I've developed an anal fissure that I can't seem to get to heal. I take a fiber supplement like a metamucil which keeps my stool soft and I still can't get it too heal. I had a couple months where it didn't bleed but lately it seems to bleed every few days or week or 2. I think it developed from some internal trigger point physical therapy I received.

                        Pain came on hard today, I took a half tramadol before the pain ramped up to high. It didn't kill the pain all the way, I took a tylenol-3 and then that brought the pain down. I try not to take the pain killers much unless the pain is too bad. Since I don't take them much they work good at relatively small doses. It's been a tough day. For a long time while at work my head feels messed (from the pain killers) and I"ve been depressed and traumatized. When the pain comes on a certain why, it just makes me panicked. It puts me in a state of dread like my body feels I want to die. Sometimes the pain just feels like something I feel but it is physical. Other times the pain is hard to describe, it just overwhelms my entire body. I can literally freak out.

                        Comment


                        • #13
                          Re: a question about bladder instillation

                          Originally posted by neohioic View Post
                          thanks for the advice. I will cut back a little on my water intake. I"m a little concerned about increasing my elmiron. I've noticed some easy bruising a couple times. I also notice some difficulty with certain things healing. I think elmiron is a mild anti coagulant. I weight about 175 pounds so I"m not the largest guy out there. i've got tons of problems now. I've developed an anal fissure that I can't seem to get to heal. I take a fiber supplement like a metamucil which keeps my stool soft and I still can't get it too heal. I had a couple months where it didn't bleed but lately it seems to bleed every few days or week or 2. I think it developed from some internal trigger point physical therapy I received.

                          Pain came on hard today, I took a half tramadol before the pain ramped up to high. It didn't kill the pain all the way, I took a tylenol-3 and then that brought the pain down. I try not to take the pain killers much unless the pain is too bad. Since I don't take them much they work good at relatively small doses. It's been a tough day. For a long time while at work my head feels messed (from the pain killers) and I"ve been depressed and traumatized. When the pain comes on a certain why, it just makes me panicked. It puts me in a state of dread like my body feels I want to die. Sometimes the pain just feels like something I feel but it is physical. Other times the pain is hard to describe, it just overwhelms my entire body. I can literally freak out.
                          This disease is frustrating and anxiety provoking. Especially when the pain flares can be unpredictable. I know, I lived with urethral pain for 2 solid years before it started to get better through meds, diet, etc. I think the increase in Elmiron, if you think it is helping you, would be good because only a small part of the medicine gets to your bladder after it is metabolized. That’s why it takes so long to build up in your system. It is a mild blood thinner, but I’m not sure it’s why your anal fissure is not healing. It may be that your body is just in a state of inflammation and that’s why it is slow to heal. Have you spoke to your doctor about it? That area of the body is particularly tough to heal.have you thought of seeing a naturopath? They might have a different take about what might be going on in your body. Also, I noticed you are taking a lot of supplements. Supplements can be great, but they can also bother certain people as well. I was taking quercetin twice a day for a month before I realized it actually was bothering my bladder more in the afternoons! As soon as I stopped taking it, I felt better. I also tried glucosamine with msm and found that bothered me. Then I tried glucosamine hydrochloride but found that bothered me as well! Same with the aloe vera pills, they worsened my symptoms. I finally am trying N-Acetyl Gucosamine (NAG) and knock on wood it doesn’t seem to be bothering me yet. I find when I flare I am extremely sensitive to things that I might not normally be sensitive to. Just a thought. If I’m going to react to a supplement, it usually happens within the next several hours after ingesting it. I know this disease is frustrating and demoralizing. It’s a puzzle I. Am still trying to figure out!

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                          • #14
                            Re: a question about bladder instillation

                            It sure is demoralizing. I"m going to stop taking some of the things when I run out. I initially thought I was having improvements when I started the hylaronic acid, glucosamine, and quercetin with bromelain. My IC doctor recommend the quercetin with the bromelain and bee pollen so I will probably keep that up. I take a priobiotic sometimes. I haven't seen a naturopath but I've changed my diet drastically. I eat very natural foods. For example for dinner I had white rice with peas. Only a little salt and some olive oil added. I'm definitely low acid. I have another appt. with the new IC doctor on Monday. He is going to do an in office cystoscope cause he wants to see the inside of my bladder with his own eyes and then they are going to do uro-dynamics. The following day a dr. is going to talk to me about iterstim.

                            I got so many different types of pain. Today is a constant dysfunctional feeling like I have to pee. Pretty constant. SOmetimes the feeling is higher, other times it is lower. Almost like a burning. Other days I get really bad cramping. I'm getting my first instillation tomorrow in 4 weeks. About 3 weeks ago started the best 2 weeks I had since this all started. So I have some hope. It is just a long way until I get better it seams.

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                            • #15
                              Re: a question about bladder instillation

                              With this disease it is 2 steps forward, 1 step back! As long as you are on the right healing path it os ok. I was doing the querctin only because I found the bromelaine bothered me too ( I bought the supplements separately because I read that some icers cannot tolerate the bromelain (pineapple enzyme). I really wonder if any of the supplements could be negatively affecting you. A good idea is to take 1 supplement for 4 days and if no negative reaction, add another and so forth. With my last flare in 2015 I think I could o ly tolerate corn silk tablets and slippery elm tablets. It’s all trial and error unfortunately. Hoping your appt with your new ic doctor goes well.if you were able to have 2 good weeks after your last installation that is good news, that you are responding to the installations.

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