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Thread: May chitchat

  1. #111
    Distinguished Community Member Howie's Avatar
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    Rose, I saw your advice before. Yes, it was on it, but it said "no refills" on my last bottle, so I stopped taking it. But my new bottle says the same thing. So I figured they must put that on every bottle, and my Dr. has to call in a new script every bottle.

    I see my doc soon, and I'll ask her about the reason that is written on the bottle. Virginia, it is working great, no seizures. What a relief not to have to worry about having another.
    Last edited by Howie; 05-25-2020 at 11:06 AM.
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  3. #112
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Sunshine ~

    Have you tried: stool softeners, glycerin suppositories, prune juice, dates, papayas, Senna tea, Milk of Magnesia? Are you drinking plenty of water, because the bowels and the bladder compete for water? Does your diet include some kind of oil, like Extra Virgin Olive Oil, or Flax seed oil?

    In my experience, the safest approach to constipation is to try these options first and an enema as a last resort.

    I can't begin to imagine how painful this is for you.

    My prayers are with you.

    Love & Light,



    Rose
    What Rose said. I won't take any medicines for constipation--no laxatives, no ExLax--and have never had an enema except when obliged to (no choice in the matter). I like to go easy on my insides even if I have to suffer a bit more. But constipation can cause huge problems, and maybe yours are huge and something drastic is called for.

    I eat 3 prunes each day and if things aren't moving along so well, I add a prune or two. Daily orange juice seems to help as well. Luckily I like prunes and so eating them is a pleasure. I hate milk of magnesia but understand that it's a mild but effective remedy too.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  5. #113
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    [QUOTE=Earth Mother 2 Angels;96057]((((((Hugs to All)))))) ~

    Sunshine ~

    Have you tried: stool softeners, glycerin suppositories, prune juice, dates, papayas, Senna tea, Milk of Magnesia? Are you drinking plenty of water, because the bowels and the bladder compete for water? Does your diet include some kind of oil, like Extra Virgin Olive Oil, or Flax seed oil?

    In my experience, the safest approach to constipation is to try these options first and an enema as a last resort.

    I can't begin to imagine how painful this is for you.

    My prayers are with you.

    Love & Light,



    Rose[/QUOTE

    Yes. I take stool softeners (Docusate Sodium), Benefiber, prune juice with Miralax twice a day. Smove Tea (Sennaside tea). Lots and lots of water. If there is no motility in the GI tract, it will be difficult to move the bowel. Plenty of EVoo, Plenty of fiber in food. Prunes, prune juice.

    Also tried the RX drugs: Mogegrity, Linzess to no avail and with bad side effects.

    THe worst of it is nausea that has developed about 4 weeks ago. Doesn’t respond to zofran, ginger tea, only strategy is to drink Gaviscon after 3 meals and one at bedtime, but still , a real problem ...and the uncaring, unresponsive staff so far.
    Last edited by Sunshine 2; 05-25-2020 at 10:44 AM.

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  7. #114
    Distinguished Community Member agate's Avatar
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    and the uncaring, unresponsive staff so far.
    Any way of changing this for the better? A caring, responsive staff might just have some good suggestions for you. It sounds as if you've tried just about everything there is.

    Is there a chance that the staff is overloaded with cases and you're just another folder with a name on it to them? If that could be the way it is, have you tried reminding them of a few noteworthy points about you--such as that you have not one but two intractable neurological disorders? It could be done quietly and matter-of-factly--just so they get some facts about you front and center so that they'll realize that you're not just a run-of-the-mill patient or one of the "worried well."
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  9. #115
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Sunshine ~

    I think you are getting way too much fiber, which could be the source of your nausea and constipation.

    https://www.medicalnewstoday.com/articles/321286

    Many years ago, battling chronic constipation with Jonathan and Michael, I overdid it in the fiber department. I couldn't understand why we weren't making progress, and they were gaseous and bloated. Our family physician told me to cut back on the fiber. When I did, things did improve a bit.

    But this was a lifelong problem for them, and finding a balance was always a challenge.

    Try cutting back on your fiber.

    Another suggestion in lieu of enemas is to use glycerin suppositories. Here's one of many on line articles about overusing enemas:

    https://www.everydayhealth.com/diges...on-relief.aspx

    I'm thinking of you and sending you healing energy.

    Howie ~

    Just call your doctor and ask her to put refills on your prescription. She should do that for all of your prescriptions. I don't think that Neurontin is considered a controlled substance, so there shouldn't be a problem with having 3-6 month refills. How often do you see your doctor?

    You're wise to stay on it, Howie, since your seizures returned, when you went off of it. Hope it continues to work well for you.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  11. #116
    Distinguished Community Member Howie's Avatar
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    Rose, according to my sister, I'm supposed to call my doctor to come in next week. They couldn't find my number or something. Maybe it was a text, because my email addy is new. I'll get it straight next week.

    I'm doing fine on the Gabapentin, it made me feel a bit sleepy the first few days, but I feel fine now. Just another med I take. I use to tease my granny about the number of meds she had to take every morning. Now, I think I take more than she did. How did I get so old, so fast?
    Evolution spans the Universe.

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  13. #117
    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :) Every since Friday my motion sensor lights in the back have stayed on day and night. Apparently the sensor went bad. I was going to wait for Andy to come tomorrow but my neighbor called and they brought me some ribs, chicken, potato salad and baked beans. When Mac came I asked him to unscrew the bulbs part way and he did. Since they are flood lights I hope they did not use a lot of power.

    Today I feel the isolation more than usual. I miss my friends and going to eat. If I did not have this board to come to I would probably go bonkers. Thank you all for being here.

    I had an email from my Belgian friend thanking our veterans for their freedom. He was 6 years old when they were liberated. I lost one uncle when his plane went down and was never found. Another uncle died by hand grenade in the Battle of the Bulge and a third uncle lost two toes in the Battle of the Bulge. My Dad served stateside. Jeanie :)

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  15. #118
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Sunshine ~

    I think you are getting way too much fiber, which could be the source of your nausea and constipation.

    https://www.medicalnewstoday.com/articles/321286

    Many years ago, battling chronic constipation with Jonathan and Michael, I overdid it in the fiber department. I couldn't understand why we weren't making progress, and they were gaseous and bloated. Our family physician told me to cut back on the fiber. When I did, things did improve a bit.

    But this was a lifelong problem for them, and finding a balance was always a challenge.

    Try cutting back on your fiber.

    Another suggestion in lieu of enemas is to use glycerin suppositories. Here's one of many on line articles about overusing enemas:

    https://www.everydayhealth.com/diges...on-relief.aspx

    I'm thinking of you and sending you healing energy.

    Howie ~

    Just call your doctor and ask her to put refills on your prescription. She should do that for all of your prescriptions. I don't think that Neurontin is considered a controlled substance, so there shouldn't be a problem with having 3-6 month refills. How often do you see your doctor?

    You're wise to stay on it, Howie, since your seizures returned, when you went off of it. Hope it continues to work well for you.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    What is a glycerin suppository and why is it a good thing.

    If I drop the fiber, wont nutrition suffer?

    And why now, after the same diet forever, Does the nausea come UP?

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  17. #119
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Howie ~

    I'm glad that you're doing fine on the Gabapentin, and I pray that it continues to control your seizures. I hope you have a good, thorough visit with your doctor.

    Many of us probably feel the way you do about getting old so fast. I know I do sometimes. Then I remember my life and think, "Oh, yeah. That all happened."

    Oh well. I'm still here, and I have shelter, food, good medical coverage, toilet paper, masks, gloves, a couple of capes , wonderful friends, Angels watching over me, and a bunch of men traipsing through my house repairing it. Oh, and I just got a new Mr. Coffee too! Right after you ordered yours, mine conked out. Those are some of my blessings. It helps me to deal with aging and loneliness to count them.

    Please let us know what your doctor has to say.

    Jeanie ~

    How lovely and thoughtful of your neighbors to bring you food and fix your flood lights. I'm so glad that you have neighbors who love and care about you. I hope that Andy can replace the sensor for you.

    I'm so sorry that you have the isolation blues. It is difficult to not be able to do what we want to do and to be free to socialize without fear. But what can we do? It's a pandemic.

    Thank you to your uncles and to all of our Veterans, who served bravely for us. This is the purpose of Memorial Day. And we must remember all of them and give thanks for their sacrifice for our freedom.

    Just know that you are not alone, and we're all here for you. Day and night. Any time zone.

    Sending prayers and love to all ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  19. #120
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Sunshine ~

    A glycerin suppository can be found in any drug or grocery store typically. It's shaped like a tiny rocket, made of glycerin. You insert it into the rectum, where it will dissolve and assist with bowel movements. It's much less invasive than an enema, and has no apparent side effects.

    Reducing your fiber intake should not reduce your nutrition. With too much fiber, your body may not be absorbing the proper nutrition from other sources.

    I am not a doctor, and I don't play one on TV. But I have 50 years of experience dealing with slow motility and constipation, and that includes Jim.

    So, based upon that experience, I suggest that 2 enemas a week is too much. And, I think you are getting too much fiber. Too much of a good thing can be a bad thing sometimes.

    As the article states, too much fiber can result in constipation and nausea.

    I think you wrote that your constipation is a result of Baclofen. With drug-induced constipation, you're really pushing a boulder up a hill. The same is true with diarrhea. You need the medication, but your body isn't happy about it. This happened to Jim, Jon and Michael. It's a real challenge.

    I administered MOM based upon the number of days without a BM. A BM everyday is desirable, but it's not always going to happen. Jim did better with prunes, raisins, and a small bowl of cereal, MOM every 3 days without a BM.

    Jon had a colostomy after surgery to remove his twisted and gangrenous sigmoid colon in 2004. That brought on a new set of challenges, but we were successful usually with MOM, glycerin suppositories, and prune juice via his G tube, when he could tolerate it.

    These are only my suggestions to help you, Sunshine. You need to do whatever you feel is right for you.

    Sending you lots of healing energy and prayers ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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