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Thread: Musings from a neurogenic bowel

  1. #21
    Quote Originally Posted by rolliniv View Post
    Tom,
    What's your level of injury? Most neurogenic bowel SCI currently use Enemeez or Enemeez Plus. Have you tried either? Enemeez is a mini-enema that allows SCI with neurogenic bowel to have a natural BM, and assists in preventing accidents, discharge and constipation. Furthermore, it's important you drink enough fluids for BM and your because of your meds. I'm using Enemeez Plus for 17+ years and don't ever think about discharge or accidents, and my quality of life has improved because of Enemeez. Enemeez offers a patient assistance program and provides samples. Hope this can assist you too. Please feel free to contact me if you want to speak privately.
    I am not questioning with pejorative intent, but I am curious about the background source for your comment, "Most neurogenic bowel SCI currently use Enemeez or Enemeez Plus." Broad sweeping statements like this need to be questioned.

    I am 37 years post injury and have tried Enemeez at least a half dozen times. This product has never worked for me. I've always gone back to Magic Bullets. Imperfect as they are, Magic Bullets help me have reliable, consistent bowel programs. I have very little trouble with "after burn." That said, the Magic Bullets are only one part of my bowel management approach which include a fiber supplement, a high fiber diet, adequate fluid intake, abdominal massage, and digital stimulation before and after a bowel program.

    While it is important for each of us to investigate all avenues of bowel management, it is difficult to find a one size fits all approach.

  2. #22
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    Quote Originally Posted by gjnl View Post
    This may seem like an unrelated question, but how do you manage your bladder? Do you take any anticholinergic medications (Oybutynin etc.) for bladder spasms. These drugs can also contribute to constipation.
    This is all so depressing. And now my car is broken.

    Since last I posted I have been using magic bullet, miralax 2xday and eat fibrous foods. The magic bullets usually work. Couple times they didn't. I also use digital stimulation. I understand what the "burn" associated with bisacodyl is. I hate the idea of taking it on a regular basis. Lots of stories about prolonged laxative use. I got the emeneez samples but not sure what to do with then.

    Life has been very chaotic dealing with car so it has been hard to get in a pattern. I still haven't dealt with getting referral for GI doc

    It's hard to express myself while typing. I end up editing and reediting so much.

    Sometimes posting on ccc I feel like I get spanking. Probably just me.

    I take no anticholinergic medications. Hydrocodone, neurontin, prozac, remeron.. Been 2 months since stopped fentenal.
    tom


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  3. #23
    Quote Originally Posted by da lurker View Post
    I got the emeneez samples but not sure what to do with then.
    This thread may help: http://sci.rutgers.edu/forum/showthr...=Mombo+enemeez

  4. #24
    Quote Originally Posted by da lurker View Post
    This is all so depressing. And now my car is broken.

    Since last I posted I have been using magic bullet, miralax 2xday and eat fibrous foods. The magic bullets usually work. Couple times they didn't. I also use digital stimulation. I understand what the "burn" associated with bisacodyl is. I hate the idea of taking it on a regular basis. Lots of stories about prolonged laxative use. I got the emeneez samples but not sure what to do with then.

    Life has been very chaotic dealing with car so it has been hard to get in a pattern. I still haven't dealt with getting referral for GI doc

    It's hard to express myself while typing. I end up editing and reediting so much.

    Sometimes posting on ccc I feel like I get spanking. Probably just me.

    I take no anticholinergic medications. Hydrocodone, neurontin, prozac, remeron.. Been 2 months since stopped fentenal.
    Hey there ? I wish I had some better advice but it is also a ongoing issue for myself. However, if you have not explored or tried taking Linzess; it may be a good RX to look into and consult with the physician regarding. My other suggestion if it hasn't already been mentioned is utilizing or trying probiotics. Again ? I have had success on and off with using both suggestions but figured some additional info could not hurt. The probiotics that had been recommended to me by an infectious disease doctor are florastor & Lactobacillus ( from cullturalle). these are rather expensive and may not be a long-term solution. For example, I'm giving it a go this month again to see if it's helpful to ease some of the stomach pain and bloating.

    Totally understand how frustrating this is and the last thing that you need to be thinking about is sentence structure and grammar on here. Sending vibes.

  5. #25
    Quote Originally Posted by Chaz19 View Post
    Hey there ? I wish I had some better advice but it is also a ongoing issue for myself. However, if you have not explored or tried taking Linzess; it may be a good RX to look into and consult with the physician regarding. My other suggestion if it hasn't already been mentioned is utilizing or trying probiotics. Again ? I have had success on and off with using both suggestions but figured some additional info could not hurt. The probiotics that had been recommended to me by an infectious disease doctor are florastor & Lactobacillus ( from cullturalle). these are rather expensive and may not be a long-term solution. For example, I'm giving it a go this month again to see if it's helpful to ease some of the stomach pain and bloating.

    Totally understand how frustrating this is and the last thing that you need to be thinking about is sentence structure and grammar on here. Sending vibes.
    A thought about Linzess...talk about expensive. I see a gastroenterologist with a specialty in neurogenic bowel. She suggested that I try Linzess. I had a pretty good idea that it was an expensive drug because it is advertised on television and in print media. I also suspected it would not be covered by Medicare and my Part D, drug coverage. $400 for a one month supply later, I took this drug and saw no change in my bowel program reliability. Everyone reacts differently with drugs, so it may be worth a try, but because of its expense, it may not be a long term solution either.

  6. #26
    2 ideas:

    1. If you're on fairly high doses of oral opiates maybe talking to your doctor about a PAMORA drug. Those work at your GI to stop the constipation you get from taking opiates.
    2. Try irrigating your bowel instead of laxatives. I swear by it, been doing it every other day (sometimes once every 3 days) for going on 4 years now, haven't touched a laxative or enema.

  7. #27
    Quote Originally Posted by paraparajumper View Post
    Try irrigating your bowel instead of laxatives. I swear by it, been doing it every other day (sometimes once every 3 days) for going on 4 years now, haven't touched a laxative or enema.
    Do you mean Peristeen?

  8. #28
    A very much cheaper option regarding probiotics would be kefir, well worth a try if you haven't already.

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