Please help with some advice. My husband is having so much trouble with constipation. He has tried increasing fiber and liquids, stool softeners, Miralax, Metamucil, magnesium citrate, Senna, Linzess, etc. etc. The only thing that gets him actually going is Dulcolax. He has been to the emergency room twice in the last three months after no BM for 72 hours. The gastroenterologist said this is common with PD. He also said using Dulcolax on a regular basis is a bad thing and can create dependency on laxatives. He has been on the highest dose of Linzess with Miralax and he is only having a bit of watery diarrhea. The doc doesn’t have any more advice. What are we supposed to do? We are so discouraged and feeling a bit desperate.
Chronic constipation: Please help with some... - Cure Parkinson's
Chronic constipation
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Vitamin B1
park_bear in reply to
Strongly seconded. Daily high dose Vitamin B1 (thiamine HCl) restores normal colon peristalsis. Takes a week or two. See also this post:
healthunlocked.com/parkinso...
I'm not sure that is universally true. Although I am currently taking B1 and currently have very mild constipation, i think other things are responsible. Indeed on my first 2 attempts to get started on B1 worsening constipation was one of the reasons I stopped. There would appear to be many others whose constipation has not been helped.
I’m with WTP on this. B1 does not help me at all with peristalsis.
I have not been diagnosed with anything, but I had really bad constipation for a few years (at one point it got so bad I was becoming incontinent). Teff porridge has helped a lot. I still take miralax to make things a bit easier. Miralax by itself did not work, nor did a very high fiber diet (~75g / 1500 calorie per day diet as tracked by cronometer). People say teff has a lot of fiber, but other high fiber foods don't seem to have the same effect on me - even high resistant starch foods. In the US, Whole Foods sells organic Teff grain. Drinking 2 Yakults / day also will work for me. If I don't do either Teff or Yakult, the constipation comes back.
Broccoli sprout smoothies help a little bit (there was a study that found 20g/day helps with IBS-C, increases gut motility); I think the broccoli sprouts help me mostly with GERD.
Hope you find something that works.
This is what worked for me...
Take Miralax every day until you have a good bowel movement (LSE - Large and Soft stool that is Easy to pass).
Next experiment to find the required steady state Miralax dose frequency that will keep you regular, and take it at that frequency, forever (or until something changes)!
It could be 1 dose of Miralax a day, or 1 dose every other day, or 1 dose every third day, ....
Once you determine the steady state dose, you can't get complacent; you must continue to take the Miralax at the frequency you determine, such that you keep your bowels moving... (the "opposite" of taking it only when you think you "need it", for by then it is too late)...
Note if something changes (e.g., your eating habits/diet, meds, ...), you may need to re-determine the Miralax dose frequency setpoint...
(you = your husband)
pdpatient in reply to
Perfect response, Levod. I couldn't have said that better. You are absolutely correct. Once you get results from Miralax, a PwP should never even think about stopping. It's going to be a permanent fixture of post diagnosis life till the end of days.
I have found that a indian herb called Amla found at Sprouts or health food stores works well. Doctor said take 2 before each meal and it works for me, Its a Indian goosberry so it is harmless.
You’re doing all the stuff. Regarding becoming dependent on laxatives: the way I see it, my slow colon, caused by Parkinson’s, requires whatever I need to do to generate the appropriate movement. So taking dulcolax on the regular is appropriate. With me it’s about once weekly, with usually two other bm’s during the week. When I have a colonoscopy, I need to do three or four days of prep with clear liquid diet to clear everything out. Constipation was one of the first really significant symptoms of PD for me. So do what you need to to be comfortable.
Good advice. I think you are right. Do you have any experience with Senekot?
Yes, tried it. I use generic ex-lax and take four stool softeners (colace) every day. My primary care MD looked shocked but Neuro just nodded and said “good.”
If he feels he's getting near the point where he might have to go to the hospital again, he might first try drinking an 8 ounce bottle (or 2 or 3) of magnesium citrate (as though he were preparing for a colonoscopy.)
He drank one bottle last night. I will have him drink another one or two now. Thanks.
For two years or more I take Bisacodyl 5mg--generic Dulcolax It's a small orange pill in a blister pack holding 50 tabs. Generally if I took one with lunch I'd be able to have a BM the next morning. But eventually I needed two Senocot tablets along with the Bisacodyl. Since I'm seeing a neuro next week I want to ask about B1 and any other options.
The doc says he can’t take Dulcolax on a regular basis because eventually his body will be dependent on it and it will stop working. That is discouraging because Dulcolax is the only thing that works. If you don’t mind, Let me know what your gastroenterologist says. Thanks for replying.
Is that doc a neurologist? I would only listen to a neuro on this. Same as taking sleeping tabs or medication fr anxiety. Regular docs get hung up on us being dependent on particular meds as if we are going to miraculously get better .
If he can get this out now, I will try your plan. Thanks
The combination of high dose vitamin C with magnesium citrate, magnesium chloride or magnesium oxide should get things moving, but you will have to experiment to find the correct amounts for the individual. The advantage of this combo is that you are likely to get other health benefits from it as opposed to unwanted side effects!
Art
I like this! Please give me a steering point dosage for these ... what is considered “high dose” vitamin C? Are all the magnesium’s to be taken at the same time? What is the correct dose to begin with! Your suggestion is exciting to think that there is an answer to this. However, to me, a rookie🤪, I need more specific direction than to just “experiment to find the correct dosage”. Can you give me a little more specific direction? I would truly appreciate it!
On vitamin C, if I was going to take it for constipation, I would use a minimum of 3 grams daily as my starting point spread throughout the day such as 1 gram near breakfast, 1 gram near lunch and one gram near dinner, possibly right before the meals.
On the magnesium, it would be a choice of just one form. The three I named are noted for helping to speed transit. Another form that has this effect is magnesium sulfate which is commonly known as Epsom Salt and is generally used for a bath soak to relax muscles and relieve aches and pains, but can be taken orally. There are over a dozen forms of magnesium available from suppliers The magnesium oxide is the most common form typically found in drug stores such as Walgreens, CVS, Walmart, Target and Costco. It is the one that is least absorbed, so less chance for pushing your magnesium level too high. Magnesium citrate is not noted for high absorption either, but as Marc noted, they do sell it in smaller bottles in a liquid form to be used as a laxative. Magnesium chloride is fairly well absorbed and is the same magnesium used to make mag oil for pain relief and cramp relief. Some people report a "loosening of things" even with the topically applied mag oil to the stomach and lower back to mid back area.
In any case, maximum label dosing or maximum daily allowance would be a good starting point. You don't want to take too much magnesium. The daily allowance for magnesium is roughly 400 mg of straight magnesium, but some magnesium forms such as Magnesium L Threonate are not suitable for helping with constipation and have a daily allowance requirement of over 2,000 mg because the L Threonate portion is a large portion of that 2,000 mg recommendation while the magnesium portion is fairly low.
I hope that answers your questions. You should always let your doctor know about everything you are taking to avoid conflicts with other meds at a minimum.
Art
I agree with Art,IMO this is a simple and effective solution and will bring other benefits I would add some b1 which helps with motility.
I have also found great results from high dose Vitamin C. My naturopath doc refers to it as a "Vitamin C Flush." Here's how it works. Whenever I haven't had a BM for 48 hours, I take (as a single dose) 16 grams of Vitamin C. That is 16 1,000 mg tablets all at once. I worked my way up to this, starting with 8 and increasing every day by 1 tablet until I got to the point where I had an easy BM. I have determined that 16 is the magic number for me. For some it will be more, for some less. The excess Vitamin C does not cause any negative side effects and it flushes out of your system as you urinate. (I can actually see the difference in the color of my urine for the 24 hours after I take it.) I used to have to do this almost daily and now have gotten to the point where I only have to do it about once a week, or sometimes go a few weeks without need to. It's rather like the process has reset my system. I have a BM within 4-6 hours of taking the Vit C. I am SO grateful that she prescribed it, as it totally eliminated the problem.
Vitamin c to bowel tolerance. B1 has helped with constipation but the stool is hard and difficult to pass.vit c seems to help loose n the stool and make it easier to pass.
You dont mention his overall situation that I can see. Did any doctor call for a look up the colon with a camera. (what do you call that) anyway diverticulitis can be the result of extreme constipation and then the cause of blockages.
Exercise, some kind of movement like walking around the block after he has taken a large glass of pure prune juice followed by a hot coffee. UMMM maybe not a long block
Do try B1 thiamine HCl if you aren’t already. My husband has had no problem with costipation while taking it but recently he reduced it just in case it was causing his anxiety and he quickly became constipated. So he increased it again and the constipation went away again.He had been taking up to 2 g per day then 1.5 then 1g per day but after about 18 months he finds he now only tolerates 500mg a day.
I think you need to try trial and error to find the right dose. He uses the vita cost 500mg capsules.
.
I find prunes and kiwi fruit every morning helpful
I used to suffer badly from constipation: often going 4 or 5 days, even up to 7 days between defecations, and then only with a terrible amount of straining; sitting on the toilet for 8 hours was common. I found this protocol worked: try to drink more water (easier said than done), Movicol (macrogol), mixed into either yoghurt or kefir before going to bed each night, on the second day take a water enema.
I can't stress too much what impact the constipation had on my life, and the improvement that relieving the symptoms has made. I suspect that some of the confusion over what to do is due to the massive range of severity between people and within the individual over time.
Have you tried half a dozen stewed prunes with each and every meal? Also, lots of water between meals? Also the Vit C and magnesium oxide like Art mentioned is good to try.
I know you mentioned liquids and fibre, but whatever drug or supplement options you consider I would always make sure he is also eating a good high fibre diet and drinking plenty of water.Flaxseed and kefir maybe with some honey to sweeten it can make a good bowel starter, but drink at least an hour before or after C/L
Daily coffee enema.
B1 and mannitol. I also eat lot of lentils. As vegetarian. Meat is very hhard to digest.
Apart from my Christmas message, if you are desperate try neurax biotic zen probiotics. I bought them by mistake, thinking they were another strain of L plantarum, but they seem to have further improved an already improving situation, so for about 30 euro a box, might be worth trying
Not sure how much you know about fibre ? 2 types soluble and non soluble. One bulks up and pushes through and the other a softener. An imbalance can lead to constipation. Google it online for a list of foods. Apple's contain both.You need to find out where in the digestive system the issue is to use the right meds. For example micro enemas micralax will only work if it's knocking at the back door and can't get out as to speak. You may need a second dose half an hour later. Third dose not really recommend.
Beware of fibogel this contains the bulking fibre so can make you much much more constipated. However laxido is a softener and will get it moving. You can take up to 8 sachets in 1pt water but you need to keep sipping water after. Laxido tastes horrible but you can mix it with squash or something.
Some people have the issue of fat not breaking down and causing a blockage so they use ox bile capsules with every meal. It is difficult to find the right dose as everyone is different. If the fat can't break down then your body won't absorb vitamins the effects of this build up slowly and may not show for months or years like, headaches, sleepy, depressed, dry skin.
Hope this helps ?
HelloI found this article very helpful.
You might want to find out if your stools are hard when they come out.
If so taking something from the non absorbable sugars list would be better as that helps soften the stool
Taking Dulcolax in this case is less helpful
multiplesystematrophy.org/a...
Best regards
After trying many combinations, my wife has found that one capful of MiraLAX combined with one heaping teaspoon of mannitol USP in 12 oz of raspberry ice tea every morning works best. As always, check with your doctor first.
I am suffering the same issues and it is very stressful. You may want to try to add to the regimen increased amounts of MiraLAX and aloe. I have also switched from linzess to motegrity I also resort to coffee enema As needed
Good luck wish you success
General comments (this is not a reply to a specific member of the forum): I found psyllium (=fibogel) the best fibre, not as a softener but as an 'evacuator'. For softening, lactulose solution. I've tried everything else, too, or almost, from lentils (impact on PD, apart from digestion), prune juice to Mg and thiamin. I haven't tried Constella (unavailable in my country) and amla (an Indian plant, I got the info on this forum). The one thing I've tried and has always worked so far is the following: I unscrew the shower head and direct the hose in the proper place, then very slowly and carefully open water; it never fills up thoroughly and you must get it right from the start. Back to the toilet seat, you should empty the lot with no trouble. It requires a separate toilet & shower or lots of disinfectant...
I hope it lasts.
I would kindly ask for feedback...
Try using a suppository after day 2, after taking Dulcolax on day 1 and/or day 2 - it may help; better than ingesting drugs daily. Also, you may want to try out Zeolite Clinoptilolite (powder) that is supposed to improve gut health, get rid of toxins. Twice a day with water should be good. Drink lots of water when you are taking it.
I'll piggy back off this comment as well. I would recommend you to not buy the supplement versions of them. All clinoptilolite powder is the same.
You can buy one month supply for $60 or buy direct from suppliers a one year supply for $30
1. Nuborex (nuborex.com)
2. Ida-Ore Zeolite (ida-ore.com)
hope this helps your chronic costipation
My constipation was mild to moderate. My PD Doc (a movement disorders specialist, gave me thee following recipe:
Put following into my smoothie and blend
Prune juice
Prunes
Wheat bran
Miralax
It worked.
Try Mag-07 available on Amazon. I take 2-3 per night.
il vous manque un peu d'exercices des abdominaux du type vélo couche.
Les abdos? Merci pour votre conseil. J'ai la maladie de Crohn et une hernie abdominale, PD a part. Vous feriez les abdos avec tout ça...
black seed oil works for me plus it is an amazing supplement
I have found help from SYMPROVE it replenishes good gut bacteria. Symprove.com
Here’s what works for me: 1. Using Squatty Potty when pooping 2. Eating roasted nuts and bananas. 3. Using treadmill to help induce movement. 4. Rubbing my stomach in a downward motion while pooping. 5. Drinking water and black cherry juice (50/50) blend.
My HWP has been taking Senecot for years, every day, eats peanuts and lots of fruit. Constipation hasn’t been a problem for him. Has had Parkinson’s for 7years. Everyone is different. Good luck in finding a solution!
You have tried every thing but fermented food. Fermented food alters the balance of gut bacteria in a beneficial way.
“The bacteria in the gut, our gut microbiota, play many crucial roles in the health of the digestive system. The gut bacteria produce substances, called lactate and short chain fatty acids, that change the pH (acid level) of the intestine. This can increase peristalsis (wave-like muscular contractions that move food through the intestines), reduce transit time and improve stool frequency.
Dysbiosis, which is an imbalanced gut microbiota, contributes to constipation.
Individuals with constipation often have significantly different gut bacteria composition than non-constipated healthy people, with higher levels of methane producing bacteria in their intestines, which slows intestinal transit time. A balanced microbiota can reduce methane production, alter gut function, improve stool consistency and frequency, and help with constipation symptoms, including bloating, abdominal discomfort and pain”
This from the site BioGaia:
biogaia.com/health-areas/pr...
Here is a list of common fermented foods:
healthline.com/nutrition/8-...
Good health begins with food ✨🏋🏽♀️✨
A cup of prune juicer every day also really helps.
Also, I started practicing the qigong "recipe for recovery" advocated by a man who says he used it to cure his parkinson's. I am only on day 5, but constipation issues are already improving. Website: fightingparkinsonsdrugfree.... is remarkable how much better I am on many levels, right away. A bit time consuming (@ 1 hour in am, 15 min. midday, 45 min. pm), but it focuses on healing internal organs of toxic overload, and it can help with a variety of things.
I thought that L Threonate had other benefits? It doesn’t help my constipation, and one of my meds (Artane) makes it worse.
Generally, my combination of Miralax in the a.m. and stool softener in the p.m. does the trick.
I have found the perfect combination for me. My ND said to take as many magnesium citrate tabs at night until I have a normal BM each morning. For me that is 6 x 150mg
High amounts of vitamin B1, over 259 mugs has helped me..have you tried aloe Vera gel.
I had to go off Synamet Brand 200/50 CR plus 100/25 CR as the maker decided not to ship to Canada so my MDS put me on Apo a generic version of C/L. Since then I have been getting more and more constipated and taking longer time per sitting to clear the chute. In the recipe is or has been: my favourite Prunes, fresh is best followed by preserved or dehydrated and lots of water, just about any fruit, including an Avocado daily at dinner, Black Licorice before meals, 2 Mg Bisglyconate, which I take - 400 mg daily for cramps etc. My Pharmacist suggested adding some Mg Citrate for its work in the colon, day 3 and still mildly congested. Some improvement. but not without still working to have a movement.
Wife has some indigestion issues so decided to try some Prtoteolytic ProBiotics from AVENA, a Canadian company.
Recommendation is take 1to 5 pills several hours before or after eating food. I started with 1 pill after dinner just before lights out and 1 pill ~ 1 hr before breakfast , including all my supplements...
I was surprised when I could feel movement in the gut after ~ 1 hr. and then there was some gas sounds but no smells. I am glad I did not start higher.
Trial in progress on the ProBiotic pills so will report if I get a consistent BM for a week or more
Cool! Will await your update!
Ok
Everyone is different especially concerning PD. I'm on the high dose B1 Thiamin hcl as well. This helps a lit with the constipation but there are times when I have to drink a 12oz glass of prune juice to help if I miss a day. Good luck.
My general experience as well. On the fourth morning w/o movement then I take a dose of Miralax with tall glass of water. Needed laxative twice this month. One dose.
Is he taking Opioids, it could be OIC?
Hi all, I work for a research agency and we are conducting testing on a new website that we are making. This website provides information and support to people with OIC (Opioid Induced Constipation) . I would love to hear about you and your thoughts on the new website. This is paid research - £50 for 45 minutes.
If you would be willing to take part in a session - please fill in this form: docs.google.com/forms/d/1w_...
No, he not taking opiods. From my understanding, chronic conscription is often a problem with Parkinson’s. My non-medical interpretation is that the weakened muscle condition effects all muscles of the body, including the digestive system. Actually, after continuing to find a resolution, the Linzess has helped. The cost of it is scary for people like us on a fixed income. I was able to get a 3 month support for $554.00. Mades me sick, but what can you do? You would think that in the USA, all citizens would be able to have access to needed pharmaceuticals without haven’t to sacrifice daily living essentials. But that is not the case.
That really does sound bad, I'm sorry to hear this!
You may want to try Lactulose and Magnesium Citrate powder. Both are easily absorbed by the body and also used to treat constipation.
Like Linzess both work by drawing water into the colon
Lactulose: nhs.uk/medicines/lactulose/
‘It is on the World Health Organization's List of Essential Medicines...and is available without prescription in most countries, but a prescription is required in the United States and Austria.’ Wiki
en.wikipedia.org/wiki/Lactu...
Magnesium Citrate: healthline.com/health/magne...
I would add a daily helping of Yogurt - Full Cream/No Sugar - for probiotic support.
Here you have a rather inexpensive trio to work with. This combo would boost gut & neurological health and relieves stress and anxiety.
🌺
Hello there, I had severe constipation been diagnosed with dyssynergia and chronic constipation (I couldn't go even with enemas) and nothing worked, I've tried it all. But now I go everyday, here's what I take :2 mg prucalopride
7000 mg vit C
400 mg magnesuum citrate
3 omega 3 capsules
Everyday
I suffered for 4 years with no answers, pain was part of my daily life but this saved me, I wish I found it earlier!
You are lucky you can afford Motegrity/prucalopride. That drug and Linzess are very expensive and often not an option because of the cost for many people on a fixed income. If you have any suggestions on a way to get it at an affordable price,please share it. Discount coupons are just not enough.
Hydroxocobalamin form of B12 and all electrolytes..not just magnesium..trace minerals brand potassium 99 mg contains some electrolytes and put it into timed release capsules ..or better yet..Evian water..mineral water..or a combination of these..blessings....
liquid yogurt drinks helps my partner who has GI issues
senna tea (1 bag in the AM) + stool softener 100mg (2x/day) + senna pills (2 tabs/day) helps my dad
sometimes i don't have a bowel movement for 3 days and i take 3-4 fiber gummies instead of the suggested dose of 2
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