Here's an email I sent the local support group in Aug '06. I think the only thing that has changed is that Miralax (glycolax) is now available over-the-counter....
I received quite a few replies from group members in response to this email (see below). I also got some suggestions (and opinions) from outside the group as well. I thought I would share those ideas and also an update on the use of the prescription drug Glycolax (Miralax) in my Dad's case. Thanks to Sam, Sharon, and Le for their input.
Dieter's Green Tea: This tea is a weight loss program because it causes stool evacuation. It's powerful and you don't take it and go to a concert; you have to plan to stay near a toilet all day. It causes gurgling and full evacuation. We use this if four or five days have passed since the last BM. Regularity is important to avoid compaction. The brand of dietary green tea we use now is Slim-Mate Tea (all natural) with ingredient Malva Verticellata (Cassia Angustifolia).
Senna Tea: I take senna tea every night (for keeping stool soft and harmless enough). You can find it at WalMart in the aisle with the other diet aides. Nothing else will work for me. I oppose the use of enemas because they take all the healthful bacteria out of your tract and you become more and more immune compromised. Laxatives that work as stimulants cannot work on people who lack the nerves that are targeted for stimulation, or worse they are working but you cannot get the sphincter to unlock causing terrible pain and blood pressure fluctuations (which, frankly can kill us). (Written by someone with MSA.)
Senokot: We tried everything five years ago. We found that Senokot (brand name) is the only laxative that helps. My husband takes two senokot tablets in the a.m., two at noon, and two in the evening. He doesn't need to be near the toilet. After two days, if there's no activity, then we increase the dose to 3/2/2 or 3/3/2. After a BM, we decrease the dose to 2/1/1 or resume the 2/2/2 dosage. Of course when you first start out, you need to follow the directions. After a while, you know how to monitor and manage the dosage. There are differing opinions about taking Senokot over a long period of time but my husband has been taking it for over five years and it has worked well. At Long's, you can buy a box of 100 tablets of the Senokot brand for $31. The generic Long's brand is $13 for 100 tablets. The least expensive place to purchase the generic (senna) is at Costco for $13.39 for 1000 tablets. The tablets contain "senna concentrate" or sennosides. Senna is a natural fiber. It is a combination of a stool softener and a stimulant. You can get info on Senokot at senokot.com or 877-senokot.
Aloe Vera Juice, Prune Juice, and Senokot: We used to have a horrific time but after daily use of 8 oz aloe vera juice, 8 oz prune juice and Senokot, we have not had the same problems. We do use a suppository when necessary, but it is only necessary every couple of months or so, if that often. Someone else reported that 8 oz aloe vera juice alone taken on a daily basis has solved their constipation problem.
Ground Flax: We found that ground flax (purchased at Trader Joe's) works great! We put a tablespoon on cereal in the morning. With the flax, my husband went from being very constipated to being pretty regular on a daily basis with regular stools. He usually has a BM in the afternoons and there is no difference in urgency. It has worked like a charm.
Bran: We sprinkle bran on our cereal. You can find bran in the supermarket or health foods stores. It should be on the aisle with cereals, most likely near the wheat germ. Senokot (the brand) also makes Senokot Wheat Bran. That product does not contain senna. You mix one scoop (10g) with an 8-oz glass of liquid, such as juice or water.
Metamucil: This natural fiber cookie can be purchased at Safeway or Long's. It's important to follow the directions and drink lots of fluids throughout the day when taking Metamucil. Some recommending soaking the Metamucil cookies in milk or water before consuming them so you are sure to get enough liquid in as well. It also comes in powder form.
Oranges: Oranges are very high in fiber. The white part around the orange flesh has the most fiber. You can only get the fiber from an orange if you chew it. If you blend it, the fiber is lost.
Mineral Oil: My dad's neurologist recommended we give Dad a teaspoon of mineral oil a day. He said it was tasteless and odorless. It can be taken plain or mixed with juice. I have read that the dosage may need to be decreased if the stools are too loose or if oil leaks onto underwear. Used in this way, mineral oil is a type of laxative; it coats the bowels and stool with a waterproof film. It keeps the stools moist and soft, but does not have the effectiveness of stronger laxatives.
Sodium phosphate: I recently tried sodium phosphate (taken orally) and it seemed to work when nothing else I tried did, except enemas. Sodium phosphate can pose dangers for people who need to follow a low sodium diet or who have congestive heart failure. Be sure to look at the warnings before you try this. (Written by someone with MSA.)
Walking: Dad's physical therapist says that by walking, you allow gravity to work and it gets the bowels moving. Indeed, before we started Dad on Miralax (see below), anytime he stood up and walked 10 feet, he felt he had to go to the bathroom.
OTC regimen recommended by my dad's neurologist: 8 glasses of water a day; half cup of prune juice EVERY day; double or triple the docusate sodium (stool softener) gradually to a max of 300mg/day; one teaspoon of mineral oil each morning; increase exercise; try to limit the Boost High Protein as it tends to add to constipation. I asked the dietitian who spoke at a PSP conference in April '06 if she had heard this about Boost (which is similar to Ensure); she said she had not. I asked the RN who works at Dad's assisted living facility and she said she had heard this. (I contacted the Boost folks at boost.com. There were no dieticians or medical professionals working there so no one could confirm this.) We switched Dad to Boost with BeneFiber. Boost with BeneFiber is a little pricier than "regular" Boost; I usually buy it for $9 for a 6-pack. It's sometimes on sale at RiteAid or Albertson's for $6.50. There are 3 grams of dietary fiber in one bottle.
Lactulose (generic): This is a prescription drug. It comes in liquid form. It pulls water from the body into the colon. This water softens stools.
Glycolax (Miralax): This is a prescription drug. It comes in powder form. It is tasteless and odorless. I mixed the powder in with a glass of OJ with fiber. It can be taken on a full or empty stomach. I started out with a half dose for two days, then gave a full dose (which is 17g or one heaping tablespoon). That produced a BM in the first attempt. Usually Dad's BMs are every 5 to 7 days, after 10+ attempts and considerable straining/pain. So the fact that we got a BM after 3 days on the first attempt was a record! I learned this Monday that in the week since I departed UT, Dad had two BMs in his underwear, while sitting down, and was completely unaware of the need to go or that he did go. So, I've cut the dosage back to half. I'm keeping my fingers crossed that this was not the first signs of bowel incontinence but rather the Miralax working too well. Miralax softens the stool and increases the frequency of bowel movements by retaining the water in the stool. The pharmacist described this as a very mild laxative. I was told by the MD that prescribed this that a side effect is diarrhea; he instructed me to be in UT for a week so that I could closely monitor the situation. I don't think this medication was very expensive since a generic form is available. One home health nurse who was visiting Dad's neighbor was very concerned when I told her Dad was taking Miralax. She emphasized the importance of Dad drinking 8 glasses of water per day when taking the Miralax; otherwise, if an insufficient amount of liquid is consumed then the Miralax acts like a plug.
There's a good discussion of constipation on this British website about MSA:
They use the British term "poo" for stool.
There's a good overview of laxatives on WebMD at:
http://www.webmd.com/hw/health_guide_at ... 1.aspThere
are four kinds of laxatives: bulking agents, stool softeners, osmotic laxatives, and stimulant laxatives.
Date: Fri, 14 Jul 2006 01:32:20 -0700
From: Robin Riddle <email@example.com>
Subject: Fighting constipation- OJ w/fiber, Zelnorm, pastes
This email will only be of interest to those battling constipation....
Constipation is a common symptom in PD. I read one statistic that "lower bowel involvement could be one of the earliest signs of PD in some patients, perhaps preceding parkinsonism by 15 or more years." So, it's a common problem and probably many of you have been battling this problem long before any Atypical Parkinsonism signs appeared.
I don't have too much to offer on the subject. My dad has this problem in spades. We've been very focused on making diet changes (adding fiber, adding fluids) and view the prescription drug route (Glycolax) as the last resort.
One thing I found in the grocery store in UT during my June trip there was Tropicana fresh-squeezed OJ with fiber added! I noticed that Safeway in the Bay Area carry this now too.
Also, on an email digest I receive, someone recently suggested the prescription drug Zelnorm for the problem: "Mom's been on Zelnorm for about three months and is doing much better in this regard (constipation). It's a medicine developed for Irritable Bowel Syndrome but works well for many sedentary people as it helps move food through the system more quickly. Most people take two tablets daily. I started Mom on a half. Now I give her a half before first food in the morning and a half before dinner in the evening. She is much more regular in elimination and stools look more normal. As has been the case for several years, she also receives 10 cc. of Docusate (stool softener) each morning. The literature and advertising for Zelnorm state that it is for women, does not work well for men. However, our visiting nurse said recently that it is now being given to men, too."
On the same digest several years ago, the following recipe was provided for a home remedy for constipation: Mix 1 cup applesauce, half cup prune juice, and 2 T. bran. Refrigerate. Eat 1 T. daily. Some people put it on toast or a cracker. Others just take a spoonful of it.
And, more recently, this recipe was provided for an "anti-constipation fruit paste": 1 lb. pitted prunes, 1 lb. raisins, 1 cup lemon juice, 1 lb. figs, 1 cup brown sugar, 3.5 or 4-ounce package Senna Tea (found in health food stores). Steep tea 5 minutes in 3.5 cups of boiling water. If it's loose leaf tea, strain the tea to remove the leaves. To 2 cups of tea, in a large pot, add fruit and boil for 5 minutes. Add sugar and lemon juice. Cool. Use food processor or blender to turn mixture into a smooth paste. Place in plastic container and put in freezer. The paste will not freeze; it will keep a long time. Eat 1 or 2 T. daily.