Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Thursday, August 23, 2007

Whoever Named It GoLYTELY Had a Cruel Sense of Humor!!!

I said I was going to quit talking about my elimination problems. Well, no such luck, so skip this post, if you're as tired of reading about it as I am of struggling with it. Anyway, I called my Gastro the other day to tell him that, even though I had gone a week on his full strength Bowel Retraining program, that I still felt blocked, and he called back yesterday. I'm in the process of drinking down 4 liters of GoLYTELY, by the hardest. I've had surgery and colonoscopy preps before, but I used Fleet. At this point, I'd say I'd rather drink a small amount of horrible tasting Fleet than a gallon or so of relatively bland tasting GoLytely! I think I'd be nauseated if I had to drink that many glasses of just plain water every 10 minutes, let alone this stuff.

OK, I've griped. I still want my doctor to do a colonoscopy, though, because I don't think I'm going to have any peace of mind until he does. I've tried not to worry, but I really do have the sensation that there's some kind of tissue blockage. So, I'll have this to go through again sometime or another soon. Gee, what fun.

Now, I'm praying this does the trick and clears out whatever the problem has been. I'm also praying that I will have peace of mind with what my Gastroenterologist tells me, but that I continue to press for a resolution if I'm not. I have learned that I am the best judge of what my body is doing, not the doctors! And I think God expects me to continue to be my own best patient advocate.

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13 Comments:

  • At 8/23/2007 11:29 AM , Blogger Marion said...

    I agree with you, DB, listen to your body and your intuition...they won't steer you wrong, even if doctors don't necessarily agree.

     
  • At 8/23/2007 11:50 AM , Blogger Dirty Butter said...

    That's a lesson I've learned the hard way, Marion, and I firmly believe that I'm the ultimate authority on ME.

     
  • At 8/23/2007 7:12 PM , Anonymous Lara Belonogoff said...

    I do think you are absolutely right to trust your judgment—and that you have to be your own advocate or when you are too tired to do so to make sure that someone, like your hubby, can do it for you.

     
  • At 8/23/2007 8:22 PM , Blogger Dirty Butter said...

    We've been concientous patient advocates for all 4 parents, our children, and for each other, as long as I can remember. I quit believing that what doctors said was Gospel truth after I begged our Pediatrician to give me a referral to have one baby daughter's feet checked. He finally gave in after repeated begging, rather disgusted with me, and gave me the referral. The Orthopedist put BOTH of them in corrective shoes. I changed Pediatricians after that, and have never forgotten that lesson.

     
  • At 8/24/2007 8:09 AM , Blogger Sheila said...

    DB,
    You keep being persistent.

    A week ago I had my first colonoscopy and drank the same stuff the evening before. I swear you are right on about the name and a cruel sense of humor. Try as I might, I just couldn't keep up to finish the gallon by 8 p.m. as instructed, finishing instead around 9. This was the worst and I'd opt for anything else to clear the way next time, which shouldn't be for a long time. The procedure itself was a breeze and we went out to lunch afterwards.

    Good luck with trying to get to the bottom (sorry, couldn't resist) of this.

     
  • At 8/24/2007 5:38 PM , Blogger Dirty Butter said...

    Puny, puny, Shelia ROTFL!!

    I'd be interested in knowing why he chose that clean out med, rather than the Fleet he always orders for my colonoscopies. If anybody knows why one is preferred over the other in different situations, I'd love to hear about it. I'm about to go Google it, myself, and will post if I find anything.

     
  • At 8/24/2007 5:50 PM , Blogger Dirty Butter said...

    Well, I can never be 100% sure that I am interpreting the clinical studies I find on the net, but if I'm reading them correctly, GoLytely cleans you out more completely. Bummer

     
  • At 8/25/2007 2:23 AM , Blogger Elizabeth McClung said...

    Wow. One gallon? I am starting to have a "and this is science?" moment.

     
  • At 8/25/2007 5:16 AM , Blogger Dirty Butter said...

    4 liters, to be exact!! Yes, Elizabeth, it's really that much, and it looked bigger every time I got it out of the refrigerator to drink another glass full. Thank goodness it really doesn't taste all that bad, more like slippery, salty water. I may be done that way to keep you from getting dehydrated, as it really does pull the fluids out of you.

     
  • At 8/25/2007 7:55 AM , Anonymous Joe said...

    Even those of us in the medical profession that administer this awful stuff to people have made the comment about the name. One of my fellow nurses even suggested at one point that the name be changed to "Go Fast and Furious."

    Here is a little more insight to the medication: the phrase "Lyte" in the name refers to the electrolytes that the body needs - especially Na+(sodium) and K+(potassium) the "+" symbol I included means that the element has a positive charge to it and must be linked to another element with a negative charge to be stable. That element is Cl-(chloride) When you link the Cl with the Na or K, what you come up with are two different types of salt; sodium-chloride (table salt) and potassium-chloride (one of the salts found in sea water).

    Either way, the body cannot function properly without a balance of sodium and potassium. They are critical to both nerve and muscular function.

    The biggest risk if someone becomes dehydrated is the imbalance of these two electrolytes. The benefit of GoLytely is that it helps to maintain the balance of these electrolytes. That is also why it comes in a gallon. Believe it or not, when you are done reeling from the effects of this awful stuff, the amount of water that came out of you is less than the amount that went in.

    Sorry for the long winded explanation, but this is how I educate my patients about the medication so they don't have any "surprises" when things start to happen.

     
  • At 8/25/2007 8:32 AM , Blogger Dirty Butter said...

    Thanks for th explanation, Joe. I figured the volume must have had something to do with staying hydrated, as I'm not one to drink anywhere near as much water as I should. I'll testify that it put a lot of water in my system. In fact, my normal level of edema has been worse since then. I wonder if there's any connection??? I don't dare increase my diuretic dosage until the doctor says I should, so I'll see if it goes away on its own this weekend.

     
  • At 8/26/2007 10:42 AM , Blogger Jackie said...

    Life was so simple when I was little and had bilharzia and had many internals, they just gave me a bottle of castor oil and it worked well if you could put up with the cramping. I can't drink so much liquid or my kidneys would play up badly.

    With my intense aversion to the medical crowd I am trying to make up my mind whether to visit a doctor as the morning after my flight back from the coast I woke up with vertigo and it isn't getting better. Think I'll wait a few more days as being retired I have to go to a Govt hospital and that's scary.

     
  • At 8/26/2007 3:26 PM , Blogger Dirty Butter said...

    You're right, Jackie. There were warnings on the bottle and the PDR sheet that comes with it about certain people who should not use it, and those with kidney problems was on the list. I don't remember ever having Castor Oil. Milk of Magnesia was Mama's favorite. ;{

     

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