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Thread: What about Macrobid, is it safe?

  1. #1
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    Question What about Macrobid, is it safe?

    I saw my Urologist on Thursday because I have been plagued with at least two (possibly three) UTI’s in the last two and a half months. What a bummer, these infections are causing more and more spasms in my bladder and are causing me to urinate around the catheter many times a day. It’s been twenty-three years since my first SCI, and almost seven years since my second SCI, (nope I didn’t get enough fun from just one, so I had to try another one) and I think I have had maybe three UTI’s in all those years. Of course for years I was able to self cath intermittently. For the past nine months I have had to be cathed with a urethral Foley due to constant leakage after receiving a Baclofen implant. I can’t seem to ever get over the bladder infections these days. I showed positive for yet another infection when I got my latest results on Thursday (GRRRR!).


    It’s a real bummer to have this Foley in place 24/7, but what other choice do I have? Diapers are strictly not an option in this girl’s life. No way, no how! I am currently trying to convince my Urologist into changing me over to a suprapubic cath, but he is hesitant for the time being, stating that he feels a suprapubic should only be considered as a last resort! He did relent and say that if I was still uncomfortable with big time bladder spasms and big time urethral discomfort by December (my next scheduled appointment), he would consider placing a suprapubic at that time. Yeah right, like these things are likely to change for the better in six months? I doubt it; they’ve only gotten worse over the last seven months. I’m constantly miserable (urethral irritation) and always leery of leaving the house anymore because of painful spasms and leaking at the most inappropriate times. I hate this being cathed 24/7. It’s almost like a prison sentence in my humble opinion. Oh for the days when I could walk and pee like the so called normal folk. Does anyone else ever just get plain old sick and tired of catheters, digital stim, and all the other lovely things that go with SCI? I’m at the point currently where I am just fed up with the whole mess. Sorry about that little tantrum there, I’m over it now. I just wanted to vent for a sentence or two, LOL! Seriously, I just get tired once in a while with all the little extra things that are necessary for life post SCI. This isn’t how I saw the rest of my life a bit over twenty-three years ago, but then which of us ever did see our future this way? Hmm, I bet not a single one of us did!

    Anyway, my questions are these?

    Is Macrobid safe to use on a daily basis for the long term? My Urologist tells me that I should be taking this medication for life now. Is this true in anyone else’s life? I was sort of stunned when he prescribed this course of treatment. I have had a serious MRSA infection twice previously, both times MRSA meningitis in my catheter that delivers my Baclofen to the intrathecal sac, and on into my spinal fluid and naturally up into the brain. I nearly lost my life both times to these infections. I was in a coma for over two months with the last outbreak and I was on Vancomycin, Aztreonam, both by IV PICC line along with Rifampin orally for over nine months (I just finished with therapy almost four weeks ago).

    It actually scares the freaking willies out of me to think of going back on another antibiotic again. What about MRSA becoming resistant in my system? Perhaps an SCI nurse might be able to answer my question and put my fears to rest.
    My second question is this:

    Are there folks out there who can give me some input about suprapubics and whether or not they cause fewer spasms in the bladder in their experiences? Are you happy with your suprapubic? What are side some effects and complications with a suprapubic as compared to a urethral Foley?


    Oh, one more question, I want to know if it is safe to resume sex while using a urethral Foley as a woman. It’s been almost ten months , and I want to get that part of my life back too; if it’s safe that is! My visiting nurse says no, but she is very strict about every aspect of my care. She is cautious to the extreme and overly so, even my Urologist agrees with that one. My nurse told me I couldn’t go into our pool for water therapy with a urethral Foley and my doctor tells me it’s no big deal. I didn’t remember to ask my doc at my last visit because I was so freaked out about the Macrobid thing!

    Let me know about your experiences with a suprapubic folks, will you? I want to have as much ammo and knowledge for a go at round two with my Urologist (six freaking months he wants me to wait, I don’t think I’m gonna make it that long).

    Thanks,

    Jan

    Last edited by janjam2; 06-14-2008 at 10:42 PM.

  2. #2
    I have known many people who have been on macrobid long term. While it is not for everyone, it does work for some people. It should not make MRSA resistant to the other drugs, but I don't believe that it will do anything in fighting MRSA.

    As far as having sex with a foley in: GO for it!!! Just be careful not to pull on the catheter- you can do this by taping the catheter to your leg or using a velcro catheter strap. Don't make it too tight, but don't make it too loose (sorry- I can't be more specific). If you are susceptible to autonomic dysreflexia- know that it can happen during intercourse. You would need to stop- let it resolve and then if you feel up to it, try a different position. More than anything- just enjoy yourself and relax.

    Any other questions- please ask.
    CKF

  3. #3
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    Thanks so much for the information and advice about using Macrobid long term. After reading your reply to my post just a bit ago, I sent my husband to Walgreen’s to get the prescription filled . I hope I’m one of those people that Macrobid works well for.

    Now, about the sex with a Foley…priceless! Thanks EVER SO MUCH for the reminder about autonomic dysreflexia. I never gave it any consideration and will make sure we watch for the signs as I am frequently bothered with it.

    Not one minute after my husband left for Walgreen’s, Melody (my caregiver) came into my bedroom without a word carrying an aromatherapy candle, a soothing CD, my blood pressure cuff, a Velcro catheter strap that I forgot I even owned, some pretty pink nail polish, and last but not least one of the happiest grins I’ve ever witnessed on her face. I think she’s made some plans for me this evening, don’t you? God created some extremely special people when he put excellent caregivers like Melody on this Earth. I hope that Melody never leaves me. Sorry if that's TMI, but it struck me as sweet and funny at the same time.

    Thanks so much for making my weekend a brighter place (BLUSH) and for putting my mind at ease about Macrobid! I hope your weekend is terrific.

    I can't believe it took me almost 23 years to stumble on to this site. The information I have been reading on CareCure is terrific.

    Thanks so much CKF for being a part of this great place in cyberspace. I appreciate your candid advice and your willingness to share your knowledge and experiences so freely.

    Jan

  4. #4
    Senior Member jessie.gray's Avatar
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    I have been on Macrobid for almost 6 months and have not had any UTI's. I take 100mg in the evening. The only problem I noticed is that if you are on long-term antibiotics, you can sometimes get yeast infections. Eating plenty of yogurt or taking a "good bacteria" supplement helps a lot with this.

    I have also gone swimming with a Foley catheter in place with no problems at all. I bought one of those elastic leg bag holders to keep the leg bag secure on my leg. I think Urocare makes these (the one I bought was from A-Med Healthcare). As for sex, I didn't have a Foley in when I started having sex, so can't help you much there.
    You might want to get this book on Amazon.com "The Ultimate Guide to Sex and Disability". This is book is awesome! I read the entire thing in 2 days and found it very useful.

    Glad to hear your weekend went perfect!

    Jessie

  5. #5
    I hope that you had a wonderful weekend!!! Keep up the good work and remember- anything that you did before is fair game now. You just may have to figure it out.

    Have fun!

    CKF

  6. #6
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    Smile

    Hi Jessie:

    Thanks for sharing your personal information about using Macrobid and swimming too. I feel better about taking the Macrobid now that I’ve heard a bit more about it from the SCI nurse and you. I was extremely worried about bacteria building up immunity to the antibiotics in my body rendering it impossible for me to fight off infection. That’s all I need! I started taking Macrobid on Saturday night 100 mg. I’m going to stick it out for the time being and see if it helps. I was really glad to hear that you’ve been taking it for six months with such great results. I hope the trend continues for you. I also appreciate the warning about yeast infections; I’ll be sure to watch out for those.

    Oh, also thanks for the info on the Urocare leg bag holder. I was wondering how I was going to handle that part of swimming. I ordered two of them from A-Med this morning. I can’t wait to slip into the pool where it never matters that my legs don’t seem to want to be a part of the rest of me. There’s nothing like the pool to take away some of those tired achy feelings while floating around in the warm summer sun.

    I’ve been scrambling to find an audio version of the book. I lost my vision when I had a myleogram to determine the amount of damage my spine sustained when I fractured my neck (C6). I hope I can find it. Thanks for the information. You never know what great information lurks in such books.

    Again Jessie thanks for the information. I really appreciate it. Oh and yes, my weekend went very well indeed despite a few autonomic dysreflexia incidents, which were handled very easily. We live and we learn!
    Jan

  7. #7
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    The weekend went very well indeed! Thanks for the invaluable advice and encouragement. It's so nice to be able to tap the experience power and knowledge of others.

    BTW, my husband sends his eternal thanks!

    Jan

  8. #8
    Long term use of Macrobid is also a set-up to developing multiply drug resistant organisms (MDROs) like MRSA or VRE or C. diff. It really is only helpful for e. coli and staph aureus UTIs. It is not a totally innocuous drug. I have seen it cause serious liver problems and even aplastic anemia when used over the long term. Most seriously, it is strongly implicated in an acute pulmonary condition that can even be fatal.

    Here is some information on nitrofurantoin side effects:

    http://www.rxlist.com/cgi/generic/nitro25m_ad.htm

    (KLD)

  9. #9
    Senior Member jessie.gray's Avatar
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    Quote Originally Posted by janjam2
    Hi Jessie:

    Thanks for sharing your personal information about using Macrobid and swimming too. I feel better about taking the Macrobid now that I’ve heard a bit more about it from the SCI nurse and you. I was extremely worried about bacteria building up immunity to the antibiotics in my body rendering it impossible for me to fight off infection. That’s all I need! I started taking Macrobid on Saturday night 100 mg. I’m going to stick it out for the time being and see if it helps. I was really glad to hear that you’ve been taking it for six months with such great results. I hope the trend continues for you. I also appreciate the warning about yeast infections; I’ll be sure to watch out for those.

    Oh, also thanks for the info on the Urocare leg bag holder. I was wondering how I was going to handle that part of swimming. I ordered two of them from A-Med this morning. I can’t wait to slip into the pool where it never matters that my legs don’t seem to want to be a part of the rest of me. There’s nothing like the pool to take away some of those tired achy feelings while floating around in the warm summer sun.

    I’ve been scrambling to find an audio version of the book. I lost my vision when I had a myleogram to determine the amount of damage my spine sustained when I fractured my neck (C6). I hope I can find it. Thanks for the information. You never know what great information lurks in such books.

    Again Jessie thanks for the information. I really appreciate it. Oh and yes, my weekend went very well indeed despite a few autonomic dysreflexia incidents, which were handled very easily. We live and we learn!
    Jan
    Glad I could help! Right now, I am waiting for a waterproof cuff to come to the medical supply shop, so I have something to cover my PICC line when I go swimming. I have had a PICC line in for 2 months for blood draws and IV stuff, and have really wanted to go swimming, now that its getting warmer outside. The waterproof arm cuff cost me $45.00, but it was worth it. I love swimming because it makes my back so relaxed and less painful. Plus, even though my legs just dangle in the water, I can swim all over without any pain or stiffness.

    I hear you on those annoying dysreflexia episodes. I get those every so often when my diversion colitis flares up, and it seems to take forever for that massive headache and sweating to go away. My neurologist told me that I am the first patient he has ever seen that get's dysreflexia symptoms with such a low-level SCI. Lucky me, huh?

    As for the book, you might want to contact the publishers "Cleis Press" www.cleispress.com and ask if they have that sex and disability book on tape. Who knows, they might be nice and even make you a talking book of it.

    Jessie

  10. #10
    My Dr told me that I might have to take it for 6 to 12 months. But I have test to do so he put me on 875mgs of Augmenton 2 times a day.
    Mary
    I want to Rock you Gypsy soul and together we will flow into the Mystic.
    Van Morrison

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