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    jen74
    ICN Member

  • jen74
    replied
    IC pain and instillations

    Hi Gals.
    I am rather new to this group. I am 32 years old and have IC. I started having pain issues with it since last May. I tried elmiron, but it gave me side effects so I stopped it. I tried hydroxyzine, but it was not really helping me so after a month I stopped it. I am seeing a new urogyne who said she does instillations using heperain, lydocaine,steroids, and biocarbonate which is like a bladder cocktail. She said alot of her patients get relief with this. I have to do it once a week for 6 weeks.

    Have any of you had these instillations and did they help you? I also just got over having a nasty UTI which really ran me down as far as pain is concered. I just finished my last antibiotic this morning. I am very concerned because I have no clue as to how I could have gotten a UTI. I mean my hubby and I have not had sex in months due to all the pain I am in, also I try and be very clean as I can down there. I have no idea how in the world I got this UTI. Also, It made my IC sooooo much worse. And that bad part was, I usually buy the over the counter UTI test strips, and they did not even pick up the infection. Only the culture did. So now I have no clue how I will even know if I am coming down with an infection or not. It is so hard to tell when you are in severe pain already. And I know that having infections can make the IC way worse.

    Also, I wanted to know if any of you have done installations yourself at home? Is it hard to do?

    I believe my pain in the bladder is located mostly at the bladder neck as that is where it feels like it is. I also know my upper part of the urethra closest to the bladder opening is inflammed, as my urogyne I had before said he saw this during a cystoscopy.I have a constant burning feeling in there all the time. I also get really bad pelvic pain at times. NOw my period is due and that is going to make things alot worse.

    Also, do any of you ever feel like you dont empty the bladder all the way after you pee? I have been experiencing this off and on for the last week. I am not sure if it was because I had an actual infection on top the the IC that was causing this. I went to my urogyne This past Tuesday and the nurse had me pee and then checked to see how much was left in the bladder which was not much at that time(like 10ccs). But I know that at other times I think I do retain some. I know because I drink alot of water every day because it helps to dilute the pee and it is not as acidic. Well, I noticed that like three days ago I would not pee nearly as much in amount as I usually do(and I was drinking the same amount I always do, even more because of the UTI) and I would not even get up in the middle of the night to pee and when I did pee first thing in the morning I would only go like an ounce or two, but when I pressed my pelvic area, I felt like I still had to go alot. But it happens off and on. It seems as the day goes on and I drink more, I feel like I empty better. But at night it gets worse, which is weird because I am drinking.
    I fear I am going to lose control of my bladder and it will shut down on me and not work at all and I wont be able to pee at all. I know there is the ER and I could get a catheter, but I am going to be honest, I dont think I could tolerate a cath in place for more than a few minutes because of all the pain I have in there. Is it common for the bladder to just stop working with IC? What do you gals do if this happens? Sorry for all the questions, I am just still trying to learn, and still very scared. Thanks.
    Jen

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  • icnmgrjill
    ICN Founder

  • icnmgrjill
    replied
    Who would have thought!!! I think you should file this with Medwatch! It's just too funny! Imagine what would happen if someone with this unit tried to walk into the White House with the same set up! Ohhhh Myyy Gooodnessss!!! Wouldn't that be a scene to remember!

    Jill

    Leave a comment:

  • yvette
    Support Leader

  • yvette
    replied
    Oh Boy Jen, what are we to do with you

    I know someone whose implant goes off when she goes thru the Home Depot theft checkers....

    Mine would go off in the CVS in Salem, MA


    Shhhhhheeeeeeeeesh, crazy, eh?

    Leave a comment:

  • Berkshire Road
    ICN Member

  • Berkshire Road
    replied
    Reminds me of the time my underwire bra set off the airport metal detector. Had to wait 20 minutes while they found a female agent to pat me down -- and boy, did she pat! I was like, "You want me to just take off the bra and send it down the conveyer belt with my keys?"

    Poor bra. Just like Harold, it was only trying to do its job.
    Berkshire Road
    ICN Member
    Last edited by Berkshire Road; 03-07-2007, 03:19 PM.

    Leave a comment:

  • SharonA
    ICN Member

  • SharonA
    replied
    OMGosh...It's Jen, the security risk!!!!!!!!! What a funny story. Make sure you write everything out so you can include it in your book.

    Leave a comment:

  • humpieumpumkin
    IC Friend

  • humpieumpumkin
    replied
    Well thank God for that! Im so happy your boss got off his High-Horse!

    Erika

    Leave a comment:

  • Sarojini
    Support Leader

  • Sarojini
    replied
    Sandy, yeah, I was kinda embarrassed, but I don't know... maybe because my husband was right there and I had a partner in crime, I found it actually kind of funny that Harold could create such a major fuss... LOL

    As for my co-workers, they still don't treat me that well despite knowing that I have the Interstim, etc... they are not the most understanding bunch in the world, we shall say. My boss finally lowered himself enough to ask how I was feeling -- what is it, a couple weeks after my surgery??

    Luckily, my immediate co-workers were not upstairs when the alarm incident happened, so only hubby, myself, and some security people know about it, and the security people around here are a REALLY cool bunch, so it wasn't so bad.

    Leave a comment:

  • tigger_gal
    ICN Member

  • tigger_gal
    replied
    oh no nothing like explaining that your butt set off the alarm sending you hugs for laughing so hard... I could just picture my self in the same predicament. I would have to leave myself a note to shut myself off..
    hope all goes well and Harold don't get embarrassed again.

    Leave a comment:

  • patricia1
    ICN Member

  • patricia1
    replied
    I know talking about them can be embarr. especially when people look at you werid when you say you have a pacemaker (InterStim). The only place so far that I have ever had to use my card was at the airport and even though I dont have to use it all the time. I then embarss. my daughter there because usually when I go through the gate is to drop her off to get on the plane and then when I tell them I cant go through the gate I have to be patted down and she hates that.

    Cant say I have ever heard of it making alarms go bonkers like that.

    Leave a comment:

  • SandyRN
    ICN Member

  • SandyRN
    replied
    Did your coworkers seem more sympathetic to you since they've actually seen Harold? I've been wondering how they have been treating you since you came back...seems like setting the door alarm off would just give them more ammo to treat you like dirt. I bet you were mortified when you (Harold) caused such a ruckus!

    Leave a comment:

  • Sarojini
    Support Leader

  • Sarojini
    replied
    I know... it is kind of embarrassing, because yeah, Harold is shy and doesn't really want to be talked about in front of strange people he doesn't know, but today it was unavoidable

    Donna, so far I have only gone into a Walgreens with Harold, but he didn't trip their security there.

    Luckily, I do have a medical alert card from Medtronic stating that I have the InterStim. I didn't have to show it today 'cause they saw me use the remote, but I feel more comfortable knowing the card is available.

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Reminds me of when I had one of those cards that I swiped in order to park my car when I worked at the hospital. I started out by carrying it in my purse because I really didn't like leaving it in the car --- parking was charged every time I swiped it.

    Then one day, coming out of a store with one of those alarm systems, I found out that my "blue card" tripped some systems --- embarassing, to say the least to have store security come and be stopped at the door.

    Donna

    Leave a comment:

  • humpieumpumkin
    IC Friend

  • humpieumpumkin
    replied
    POOR HAROLD!! He was just trying to do his job and the darn alarm went off! At least everyone knows why, but im sure you would have wanted to keep it to your self. Im glad your ok and didn't get zapped.

    Erika

    Leave a comment:

  • Sarojini
    Support Leader

  • Sarojini
    started a topic Oops!!

    Oops!!

    Oh dear... today I (or shall I say HAROLD, my trusty InterStim generator) caused a problem at work.

    Hubby and I are collaborating on a project at the moment since we work in the same department (although he is in a different lab). Today, we went upstairs to get some stuff out of our "barrier facility" -- the place where the nasties are kept.

    The door up there is equipped with a card reader, which is electronic, and it ALSO has a security circuit in it -- this circuit is designed to sound an alarm if the door is held open too long, so that the powers that be can come and see what's going on (ie, is someone trying to steal something, is someone who isn't supposed to be there trying to get in, etc).

    Well, John swiped his card and we walked through the door as usual, but as soon as I passed the door frame where that security circuit is, a horrible, ear-splitting noise occurred and the alarm just kept going off and going off. We RAN down the hall to the barrier room we were going into, and once inside, I grabbed my remote and checked on my stim. It was fine, but obviously the door wasn't.

    So, we did what we had to do and as we were heading towards the same door to go out, we noticed a crowd of people including security. The noise had been shut off, thankfully, but they were all trying to figure out why the alarm sounded, since absolutely none of the things that should set it off had happened.

    Hubby and I got to the door, greeted everyone in the big pow-wow, and moved through the door... again, as I crossed the threshold, the alarm went nuts, and everyone freaked out and started to say they were calling the alarm company, because obviously it was broken. They got the noise to stop again though.

    I took out my remote and said, "If you will, let me try something..." so I turned my stim off and went through the door, and there was no alarm. I had to explain Harold to them, and explained that my stim must be working on the same frequency as the alarm circuit... I promised to always turn it off before entering
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