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Thread: 2 yr PO & major bowel issues still persist...HELP!

  1. #11
    Senior Member Evonne's Avatar
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    I've been taking provigil now for 2 yrs with no problems that I am aware of??? Don't really know if I need it anymore though. I am going to do as nurse suggested start by cutting it in 1/2 for a few months and if i do ok with that I will just cut it out completely. I would also like to drop a cymbalta pill but that along with the Topomax (opps forgot to mention that above i take that in the pm too for nerve pain 4 small pills) seems to be the only thing I have found that even takes the edge off my pain...............i already tried neurotin, lyrica, keppra, tedegral ??, and many others that did not work for me

    I'll cut apple sauce too......what else?? try magic bullets-yes i'm gonna do that too. Am I missing anything??
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  2. #12
    i didntn realize provigil had a lot of bad side effects, i used to take it but i would fall asleep did nothing to counteract all the neurontin, i take much stronger stuff now, and stlil fall asleep.
    fenatyl is really constipating.
    i am on the short acting dose, i have the same problem, cant get cleaned out for a fresh start. been dealing with this since day one, over 7 years.
    tonight i finally tried a real enema, i used to try those fleet oil enemas and saline ones and use tone to four enemeez a day, and still was always full.
    the real enema worked a lot better tonight, absolutely no comparison to the fleets. i don't think i am cleaned out still. but a lot better than i have been in years. probably crap the bed tonight, wee fun.
    i used the salt , glycerin and mineral oil to 1/1/2 quart of water. 2 tbls of each cleansing enema.
    i was trying to find the molasses recipe , i heard that was good. i cant believe i am typing this.
    i was on amitiza, i got too nauseous. May have been too full though, same with miralax.
    i had just read in the medpub about the relistor being approved for chronic opioid constipation last week, if that didn't clear you with all the other stuff. such as amitiza and senna , wow.
    wonder what the nurse thinks of the real enema treatment. i know just from one use, it is heads and tails over everthing else, didnt feel good, with the cramping.
    but gotta get up there and oil and soften that stuff up, or it is not coming out.
    cauda equina

  3. #13
    Evonne - Hi.
    I would be suspicious that it is the fentanyl that may be playing the biggest role. Narcs are big time constipating agents. Have you been on that a long time? Did this start when you started it?

  4. #14
    I think the real enema- I guess you mean the bucket full- is okay to use when needing a cleaning out, jus tdon't use soap of any kind in it-dries it out. Plain warm water works well by itself most of the time.
    Just don't want to use this on a regular basis, more of a when needed only.

    CWO

  5. #15
    Senior Member Evonne's Avatar
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    Quote Originally Posted by arndog View Post
    Evonne - Hi.
    I would be suspicious that it is the fentanyl that may be playing the biggest role. Narcs are big time constipating agents. Have you been on that a long time? Did this start when you started it?
    I have been on it from the very beginning.....right after my accident. My Dr. was going to change me to methadone at one time but i work full-time and i was worried about driving while on the meth. I seem to do fine on the fenty. guess cause i've been on it for so long. i used to change it every 3 days and was on 25mcg now i am on 50mcg every 48 hrs but have been on that dose for a long time


    what else could i try for nerve pain that will not ZONK me out and make me all stupid and "out of it" cause I really gotta be with it..... if I'm giving a presentation to 100 people I can't make an ass outta myself.
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  6. #16
    Senior Member Evonne's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    I think the real enema- I guess you mean the bucket full- is okay to use when needing a cleaning out, jus tdon't use soap of any kind in it-dries it out. Plain warm water works well by itself most of the time.
    Just don't want to use this on a regular basis, more of a when needed only.

    CWO

    what is the "real enema"??
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  7. #17
    Tha tis what I was trying to clarify- there is a bucket with a tube attachment and it holds 1000mls to 2000mls,not the mini enema like the Enemeez or the Fleets.
    You can use warm water or add things to it.Not disposable, Clean the bucket and tubing thoroughly and reuse it.
    CWO

  8. #18
    I'd like to know what the serious side effects are from provigil, too. I have been using it for about five years now, for fatigue issues, which I finally got a diagnosis for about a year ago, after almost 15 years. It turned out I suffer from severe sleep apnea and now I use CPAP at night and have been able to cut my dose of provigil in half but still need 200 mg/day for residual fatigue. I don't take any opiates or any other meds that sedate me, and without the provigil I wouldn't be able to work full time, I would still be sleeping at least 12 hours/day........ and wanting to take a nap a good part of the rest. It isn't considered a stimulant (like amphetamines) but an agent that "promotes wakefulness", and it doesn't feel like one when you take it either. I describe how I feel when using provigil as the difference between staying up all night then drinking a pot of coffee (when I took ritalin, prior to provigil) and never having stayed up in the first place.

    Evonne, you asked what you can use for nerve pain. I think what works for everyone is different, but I never had any luck with opiates. Like you, the only thing that has helped has been topamax. Well, cymbalta helped too, but I don't take that anymore, but neurontin, even at very high doses, did nothing. In the beginning, topamax DID make me dopey, they call it dopamax for a reason, it made me sleepy and stupid, and terrible diarrhea too. Fortunately I wasn't working back then. Now, the only side effect is occasionally having problems finding the right word, but that seems to be getting better all the time. I'm guessing you take a 100 mg if you take 4 little pills. Have you considered going up on the dose? Epileptics take up to 800 mg/day, and I used to take 200 mg/day when I was using it as a migraine preventative as well (my migraines are gone, so now I take 100 mg with good control most of the time). I wonder if the fentanyl is even helping your pain. If it isn't, dropping it would most likely make your constipation a moot point. Is what little pain relief, if any, you are getting worth the considerable hassle of all these stool softeners and enemas and everything else?

  9. #19
    i switched over to methadone fo rnerve pain from couple years on oxycontin, i dont feel a thing as far as the methadone, i take a pretty low dose, 10mg 3 times a day, it does much better with my nerve pain than the oxycontin and the biggest factor, it last a lot longer, the oxycontin only lasted 5 to 6 hrs in me, so at 3 times a day i was always getting the yawns , which is my first withdrawal sign.
    methadone doesnt make me feel dopey at all, that too was my main concern, i asked around , even asked the pharmacist i deal with and they said they knew a lot of people and friends on it for pain with no loopey side effects.

    the real enema, can also be the 2 quart hot water bottle/enema/doche bag.
    i dont know why the train of though against weekly use is, the PIE and peristeen are just water enemma with a little power behind the water.
    i did the first real enema 2 nights ago, and all i have had since is gas, no stool .
    usually i have to dump 5 plus times a day every day , and that is with enemeez, it makes one a bathroom hermit
    That simple enema cleaned me out better than mag citrate and magic bullet and all the coloscope preps. i am sure if i added mag citrate that would really do it, but i really needed the attack from the bottom, it had to be loosened up.
    the fleets oil enemas and saline did very little, not enough fluid to get up there , where it was needed.

    i think once your all clogged up, like i have been dealing with for years, you need a lot of fluid from the bottom side to loosen it up.
    i read on the enema site to use salt to keep the water from being absorbed by the intestines, 2tbls salt per 1 1/2 quarts was the recipe , plus 2 tbls mineral oil and 2 tbls glyercin. the oil and glyercin are supposed to help it come out.
    i was able to hold it for about 30 minutes and did the rotational and massage the belly thing. i had been using fleets saline and oil for the last week with poor results. but at least i got some stuff out so i was able to hold it. it must have taken over a hour for it to come out , it didnt feel good, cramping, but the PIE was the same way.
    i could feel how it was working higher and higher, with 10 minutes lulls between discharges. water temp is important , they say around 102 degrees.
    cauda equina

  10. #20
    Senior Member rdf's Avatar
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    You might try Lactulose Evonne. I was prescribed it when I was impacted.
    Constipation

    In the treatment of chronic constipation[2], the metabolites of lactulose draw water into the bowel, causing a cathartic effect through osmotic action. Unlike other laxatives that are recommended for temporary relief, lactulose can be taken daily for decades. [1]

    It is safe for people of all ages, except for those in a very small percentage of the population that are galactose intolerant. Dosage may have to be adjusted over time to produce the desired effect.

    It is useful in treating people with chronic constipation due to forgetting or ignoring the need for defecation. The treament is to start the dosage at a low amount and then gradually increase it over a period of weeks until the urgency is such that a daily bowel movement cannot possibly be ignored.

    It is useful in treating people who abuse laxatives because lactulose has no toxic effect when taken at overdose levels, yet produces powerful results.
    It is useful for negating the constipating effects of opiates and opioids.

    More
    This worked for me. I was impacted, and after taking it for a while three times a day, I took some Ducolax laxatives and it all came out in one long, long setting, heh. It can be used for decades with no ill side effects from what I understand. Good luck getting things resolved.
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