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  • jen74
    replied
    I have been doing the at home instills for a few weeks now and they do help me. I use heperin,lidocaine, and saline. It is uncomfortable to a degree, but this is likely because I am so irritated in the bladder to begin with.
    Also, it depends on who is doing it. When I was having them done in the office, I had one nurse do it and it really hurt, yet when I had a different nurse do it, it did not hurt hardly at all. My husband usually helps me do them at home. It is just easier that way for me. I feel better when I am able to lay all the way back since I have awful stomach issues and when I am scrunched up or bending foward it really hurts my stomach.
    The only way you will know how it will be is to try it. Maybe you will get some pain relief. Good luck and I hope they work for you.
    Jen

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  • javone77
    replied
    I get that garlic odor in my urine too. does anyone know what it means?

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  • kari1980
    replied
    I don't know, I've only had the garlic odor after a DMSO treatment.

    Kari

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  • inlove96
    replied
    Oh I get that garlic odor in my urine all the time what does that mean??? Or I mean I get it when I am in a flare.

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  • oceandreamer
    replied
    I have been doing at home for years and at one point twice a day. It can hurt. There are some things to make it as my Dr. likes to say - as good as it gets. 1) have your Dr. use a pediatric lo-fric catheter. If he or she does not have any ask them to contact a local rep who would most likely give them some to try. I like a 10 french - your RN or MD will know what size this is. Also, you might try bearing down like you are going to pee. Even at home I find this helpful. Depending what you are having instilled would affect how much it hurts after the catheter is insterted. I find having a cold pack available for right after and the ride home helpful. Then at home taking a warm bath with baking soda sprinkled in the water helpful. The water should not be HOT. Also it needs to be full enough that the water line is above your waist - it realy relieves the pressure. This may sound gross but after if I'm in pain and it hurts to pee I just fill the tub and go in the water. It doees not burn at all and its easier to go.
    2) if you use pain med or even NSAID take an hour before.
    3) ask someone to drive you - it takes away some of the anxiety
    4) breathe!!!! Full deep breaths. you always hurt more if you breath shallow.
    5) let the RN/MD know your fears. If they are good they will come up with some ways to help too.
    Good luck!!! Remember it is your choice. Sometimes if the treatment is too much to deal with it may not be the option for you! IC is so different for each of us. Each of our bodies is built different too. so, what works for one pt may not work for another.

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  • L. Thomas
    replied
    Originally posted by kadi View Post
    Catheterization is not comfortable, but I do the home instillations of sodium bicarbonate, heparin, marcaine (rescue instillations) & they have made my life so much better~!
    I have a few minutes of discomfort & then hours to several days of relief. My days are mostly good ones now, working fulltime, wearing what I want, sleeping well & exercising. I now think of the rescue instillations as a somewhat weird way to get ready for bed and as an essential part of my IC treatment. If your office instill is to see if rescue instillations will work for you, maybe you can be set up for home treatments (catheterizing yourself is more comfortable than having someone else do it).
    --
    Did I post this? Sounds just like something I would say except I don't find it uncomfortable I agree 100%
    Last edited by L. Thomas; 06-02-2007, 03:59 PM.

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  • kadi
    replied
    Catheterization is not comfortable, but I do the home instillations of sodium bicarbonate, heparin, marcaine (rescue instillations) & they have made my life so much better~!
    I have a few minutes of discomfort & then hours to several days of relief. My days are mostly good ones now, working fulltime, wearing what I want, sleeping well & exercising. I now think of the rescue instillations as a somewhat weird way to get ready for bed and as an essential part of my IC treatment. If your office instill is to see if rescue instillations will work for you, maybe you can be set up for home treatments (catheterizing yourself is more comfortable than having someone else do it).

    When I did the DMSO treatments, that was different. They were painful, but overall they made my symptoms so much better they were worth it. I made arrangements to have them done on Friday afternoons so I could go home, take Darvocet, watch a video & rest on Saturday. I was able to go to work Mondays fine. I did those once a month for a year, but I found that the home "rescue instillations" work better for me & now I depend on those.

    I have terrible childhood memories of being strapped down & catheterized for testing. Remember, you are an adult now, you will not be thrashing & kicking, your urethra is larger, you understand the process & are making a decision for yourself in the interest of your own health. There are different types & sizes of catheters available now & more is known. It's a different situation, different context. You might want to bring a cd player with soft quiet music, or a magazine (I used to bring Guideposts because the articles are short, positive & don't require concentration), or a friend to distract you as you hold the solution after the instillation. If it burns too badly, just void it out. The main thing to remember is that as an adult, you are in charge.

    I hope that the instillations bring you relief and better quality of life--

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  • L. Thomas
    replied
    DMSO has the garlic smell. Heparin, lidocaine, sodium bicarbonate instill doesn't have an unpleasant odor.

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  • kari1980
    replied
    I'm sure it was very traumatic for you at such a young age to have that done and go through that, but try to get that experience out of your mind if you can, because it won't be as bad as you remember it being. The instills aren't that bad as long as they use the pediatric catheter, so make sure you ask them to. And like everyone else said, make sure you just take a deep breath and relax. It's pretty quick and really isn't too painful. You will just smell really bad afterwards! Atleast I did with that terrible garlic odor. You may get relief or you may not, I personally didn't get much relief from the instills, but I know a lot of others do. So you'll have to decide from your own exeperience with them whether to continue having them or not. I really hope they do help you, and really, don't stress over it too much, it really won't be as bad as your anticipating or remembering. Good luck.

    Kari

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  • RobinD
    replied
    I had a series of the instills done and not one of them hurt or was uncomfortable. I would just make it clear to whoever is going to give you one about your fears and if anything hurts tell them. But by my experience it was not a big deal and I felt so much better afterwards. Instant relief of pain.

    Let us know how you do.

    Robin

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  • inlove96
    replied
    Thanks girls. I just can not tell you how painful it was when I was a kid and had this done. I think it was this. I remember being on a table and them telling me to watch the TV...they were looking in my bladder. Then after filling it up til I was crying cause I had to pee and it hurt, they had me turn over and pee on my side while they watched. Sort of gross but I guess I had to do it. So knowing how painful that was does not make this any easier. I am not getting one yet but know that it will come to that. I hate being in pain like I am today.

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  • L. Thomas
    replied
    I have been doing home instills since 2004 on the average of 3-4 a week. I had 6 instills in the office before I started doing them at home. I have not had pain or discomfort from any of the instillations.

    There are a few things that seem to cause discomfort.
    1)Not being able to relax when the catheter is inserted (ask that you be told to inhale just before they insert the catheter and ask them to as say "exhale" as they insert the catheter. When you exhale your muscles naturally relax.

    2)Size of the catheter The ones that I use and they used in the office are very small. Actually it is a 8fr pediatric feeding tube.
    2)The catheter being advanced to quickly and hitting the back wall of the bladder. This rarely happens
    3)Steroids used in the instill..just ask
    4)Some people are sensitive to lidocaine
    5)Some people are sensitive to latex

    Share your concerns with the nurse or whoever is doing the instill. I would hope they would be sensitive to you feelings, especially since it is new to you.

    I have not had any of these problems with instills. One thing that some people ask is that the entrance to the urethra be numbed with lidocaine gel first. My urogyne always does this.

    We are all different when it comes to pain. I have to have my hand numbed before they put in an IV because it hurts me soo much. The instill really have not been a painful experience.

    Since I have learned how to self-cath when I have to have a catheter inserted I ask if I can do it myself. The nurses sort of look funny when I ask them but they always let me..and I have absolutely no pain when I cath myself.
    Last edited by L. Thomas; 06-02-2007, 09:30 AM.

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  • ICNDonna
    replied
    If I relax, they aren't bad at all, just slightly uncomfortable. The solution instilled may hurt, but if you can relax and if they use a small catheter, the insertion isn't horrible.

    Donna

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  • inlove96
    started a topic Scared to get an in office instill done...

    Scared to get an in office instill done...

    I have been told that I am probably going to have to start these. I am sssooo scared. I read the other members post on here about how bad it was....and I am scared. I have one done when I was about 10 years old....and it HURT SO BAD. I started crying when the nurse said she was cleaning me...I still don't believe she was cleaning me. I think she was putting the tube in. I never never want to go through that again. Are these really painful???
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