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talked to nurse about doing instills at home and she said NO.

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  • talked to nurse about doing instills at home and she said NO.

    Hi Ladies.
    I was suppose to go for my first installation today, but got the flu or some nasty virus yesterday and had to cancel. I really cancelled because I also have a fever, and I dont think it would be good to do anything like that while being run down as it is. Now the only bad part is I have to wait until next Friday to have the first instill.
    There is one thing that I am quite confused about. I talked to one of the urogyne nurse's who does the instills and asked her if these instills happen to help me, can I do them by myself at home, and she said No. She said that they usually do a total of 1 instill every week for 6 weeks and that should make me better possibly for a long time, maybe even years. ( Ok, this just did not sound right to me for some reason as I have never heard of anyone getting better to the point where their IC is way better after just 6 weeks.) She did say that sometimes women have to come back to do more though.
    I am somewhat tweeked that they dont let patients do the instills at home by themselves if they help. I mean I am going to be honest, There is no way I will be able to afford to keep going to her all the time to have them done. My insurance is not the greatest, and I have to pay $10 for parking every time I go, plus my $25 co-pay which they want right when I walk in the door. That is $35 dollars a week and that is not including the deductible amount I will have to pay. I am worried about the medication cost also. When I had a simple procedure in the hospital they had to give me a small amount of sedation when I had my cystoscopy and OH MY GOSH, I ended up having to pay over $400 bucks. How much do these instills usually cost anyways? I am suppose to have the lydocaine, heperain,steroid,and biocarbonate cocktail.
    This is very discourageing that the nurse said they wont let patients do the instills on their own. I mean, it is not like I can run to yet a different urogyne as there is no other good ones in my area at all. They just seems like they only want to make money of me. I mean catheterize themselves all the time and if they can it, I dont see what the problem is. I am willing to try and learn and if the nurse can do it, I dont see why I cant learn.
    What do you gals think? I know many of you do them yourselves already. How will I convince this doc to let me if they happen to help me. First I have to see if they will help I suppose. I also asked her if there were any side effects and she said no not really since it is not being used systemicaly. I also asked her if it can hurt my bladder or make me worse, and she said she has not had any women say it made them worse, only better , but that sometimes it takes a couple weeks of having it done to see good results.
    What do you think on this? Did any of your docs refuse to let you do home instills?
    Jen

  • #2
    I do them at home now, but my Dr. wouldnt let me either for 4 yrs!! I was having to go in 3 times a week for 4 yrs to get them done, (plus, I already knew how to self-cath!!) But, in my case, my Dr. was afraid I would get more infections, since I'd already had 10 in the last year, doing them there.) So, he was afraid I'd get even more at home. But, so far, I have actually had less. (It also helped that I started a daily, low dose of antibiotic.)

    They do help me alot. It isnt my only pain mgmt tool, but it is definately an important one, since I get alot of relief from them, and depending on the type of flare, it can knock some of them right out for me.

    My Dr. wrote it so I can do them every day, but I generally have to skip a day or my urethra gets too irritated. I use Lidocaine 2 % (injectable), Heparin, and sodium bicarb. I do sometimes use Marcaine, (if the Lidocaine didnt work well the day before). The Marcaine works better for me, but is more expensive. (Insurance doesnt cover mine yet...I have appealed, but havent heard back yet.)

    They run me about $3 each. But, I do sterilize and reuse the caths.

    I hope they help you too. Maybe if they work well for you, you can talk to the Dr. and he will let you do them at home. But, he probobly wont let you until you have been having them a while.

    Hope this helps!

    Hugs,
    Amy

    Comment


    • #3
      Hi Amy.
      I will see how the instills go I suppose and see if they help. If they do help, I am going to ask her about maybe doing them at home myself. The risk of infection I think would be the same whether you have them do it or you do it yourself. I mean people self cath all the time at home and do ok. What is the real difference with doing instillations?

      I think it may be a big money making thing. They want people to keep coming back and paying them each time. That is so terrible how they take advantage of people who are sick. Well, I guess I will see if it helps next Friday. Today I woke up feeling like I may be getting another UTI, I just got over one a week ago. I had a repeat culture done a week ago and it was clear so I did get rid of the infection, but feel like I may have another. I went and dropped off a urine cluture this morning just to be safe.
      It is very hard for me to tell if I have a UTI or if I am just having a bad bladder flare. The dipstick tests do not pick up my infections so I cannot rely on them at all which stinks. I feel like I will be running to my doc to constantly get urine cultures now. How do you tell when you have a UTI or just the IC? I dont get fever with my UTIs either so I cant go by that either. I just talked to the nurse and she said my urinalysis showed some small amount of bacteria, but the doctor does not want to treat me yet until they get the culture back on Monday or Tuesday. She said that the urinalysis just showed leukocytes. What does that mean? She did say if I got worse to call her over the weekend though.

      I hope I dont have another one. If I do, I am sure she will want to do all kinds of tests because it is not normal that I could have gotten another UTI this quick just after 1 week of being off the antibiotics for the last one. I still have no clue how I got the last one when I have not done anything to get one. I have not had sex in ages, and I am very clean and dont use any scented soaps or detergents.

      Anyhow, thanks for listening. Oh, when you first did your installations, did you take an antibiotic after each instill? I am worried about getting an infection because of the instill, but my urogyne claims that it is all sterile. I just dont know about that though.
      Jen

      Comment


      • #4
        Hi Jen, If you feel confident that you can do it, I would insist upon doing it yourself. I started going to my GYN's office every other day for them, and started to talk to them about three weeks later for instruction on doing it at home. I spent 110 dollars for th supplies to do it every day for 3 months. When I did it at the Dr's office I paid $20 each time and later got an explanation of benefits from my insurance and found out that they were charging them $250.00 each time for what they called a surgical procedure and 35 dollars for the visit. I was very upset by this because even though is not coming out of my pocket, it makes my insurance premium go higher. I have been doing them at home since November and they don't help anymore.

        Maria

        Comment


        • #5
          I will see how they go and if they help me or not. If they do help, then I will ask her about letting me do them myself. I just have a big feeling she will refuse. We will see though. Thanks for the advice.
          Jen

          Comment


          • #6
            Go over the nurse and to the doctor and ask him. My Uro wanted me to start doing them at home myself (not to get rid of me just so it could maybe help me more) but I wouldn't. Couldn't get up the courage and I still had the fear of caths. I know one person who had a uro who refused to give them a cath so when they couldn't pee at hom they could drain it themselves and not have to pay to go to the ER. (they didn't have IC) they ended up going to another URo who gave them a script for caths.

            Comment


            • #7
              Hey, I also went to office 2 times a week for 4 weeks, cost me a small fortune. Then I changed drs. and my new uro said she wanted me to do them at home, when I needed and had her nurse come in to make sure I could do them then gave me detailed instructions. Mine are lidocaine, elimiron and cytotec. At first she wrote it out for a compound pharm. but that was too expensive, ins. wouldn't cover all of it only half, so I called and she wrote it out for pill form and the compound pharmicist actually taught me how to mix it up myself. It is rough at first, but I use a mirror to be sure I get it right. Also, she put me on a once a day antibiotic to take to help ward off infection.

              Comment


              • #8
                Instillations

                I don't get UTI's or bladder infections when the nurse does my instillations. I do, however, if I'm not really careful, get infections about once per month when I do the instills at home. I've found a way to avoid this....I have a bottle of iodine (betadine) and I dip the end of the catheter into the bottle to coat it before I insert it. Since I've been doing this, I've not had an infection. I generally have 2 instills at the office per week and have some in the frig (downstairs one - my boys know there's nothing they would want in the 'secret' bag by now!) for the weekends. Most all of my flares are stress-induced, so I have to have the instills for quick relief. It does actually feel like cold water is being poured on a fire. I used to need a mirror, but I'm used to just 'aiming for the pain', so I'm pretty much on target every time. Good luck...feel better! I hope it is worked out so you can be able to do the home instills.

                I will see how the instills go I suppose and see if they help. If they do help, I am going to ask her about maybe doing them at home myself. The risk of infection I think would be the same whether you have them do it or you do it yourself. I mean people self cath all the time at home and do ok. What is the real difference with doing instillations?

                I think it may be a big money making thing. They want people to keep coming back and paying them each time. That is so terrible how they take advantage of people who are sick. Well, I guess I will see if it helps next Friday. Today I woke up feeling like I may be getting another UTI, I just got over one a week ago. I had a repeat culture done a week ago and it was clear so I did get rid of the infection, but feel like I may have another. I went and dropped off a urine cluture this morning just to be safe.
                It is very hard for me to tell if I have a UTI or if I am just having a bad bladder flare. The dipstick tests do not pick up my infections so I cannot rely on them at all which stinks. I feel like I will be running to my doc to constantly get urine cultures now. How do you tell when you have a UTI or just the IC? I dont get fever with my UTIs either so I cant go by that either. I just talked to the nurse and she said my urinalysis showed some small amount of bacteria, but the doctor does not want to treat me yet until they get the culture back on Monday or Tuesday. She said that the urinalysis just showed leukocytes. What does that mean? She did say if I got worse to call her over the weekend though.

                I hope I dont have another one. If I do, I am sure she will want to do all kinds of tests because it is not normal that I could have gotten another UTI this quick just after 1 week of being off the antibiotics for the last one. I still have no clue how I got the last one when I have not done anything to get one. I have not had sex in ages, and I am very clean and dont use any scented soaps or detergents.

                Anyhow, thanks for listening. Oh, when you first did your installations, did you take an antibiotic after each instill? I am worried about getting an infection because of the instill, but my urogyne claims that it is all sterile. I just dont know about that though.
                Jen
                Dani


                -Bladder surgery to correct reflux-'68
                -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                -DX'd with IBS in 2000
                -Rhabdomyolysis in 2001 (has not returned)
                -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                -DX'd with TMJ in 2000-wear splint
                -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                -DX'd with Epilepsy -2000
                -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                -DX'd with Fibromyalgia (2006)

                Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                Comment


                • #9
                  I think they will let you do them after they see if they help you or not. But, you may have to do them in the office for a few weeks until they know if it will help or not.

                  I do take a daily, low dose abx to help ward off infections, since I used to get them so often. But, I have only had a couple since I started the ABX and doing the instills at home. (I had way more before that.)

                  I hope your Dr. will be open to your doing them it home.

                  It is hard for me to tell the difference between a flare and UTI too. Like you, I usually dont run a fever with a UTI either. I am fortunate that the dipsticks pick up on most of mine. But, occasionally, they dont and I still have to go in to get tested.

                  They probobly want to wait until your culture comes back so they can get you on the right abx, not just any abx. I know it is hard to wait, but it is probobly for the best. However, if you get worse, DO call them back and let them know.

                  I hope you feel better soon!

                  Hugs,
                  Amy

                  Comment

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