Bowel problems and Parkinson's

[ParkinsonsEurope_Jen]

Bowel problems: Have you experienced bowel problems as a person with Parkinson’s? Can you share any tips on how to mange symptoms? We’d love to hear your thoughts and experiences – please comment below.

[johntPM]

13 years post diagnosis, constipation is my worst PD symptom. Macrogel (Movicol) works, if I take it, but it tastes terrible, so I miss doses. I then use an enema to help clear impaction.

[ParkinsonsEurope_Jen Administrator EPDA in reply to johntPM]

Thanks for sharing johntPM

[Hidden]

High dose, daily, thiamine hcl

[WinnieThePoo]

A diet change focussed on microbiome management. I eat much more fresh fruit and vegetable, and some grain fibre, and much less refined carbohydrate. A mediterranean diet.

Drink plenty of water

Include live probiotics in the diet. I eat live yoghurt, kefir, sauerkraut, unpasteurised cheese and drink kombucha. We make our own yoghurt, kefir and sauerkraut.

My "bowel cleanser" tip is to mix live kefir with ground organic flaxseed and honey. Up to 3 tablespoons of flaxseed as a "regime starter" and a tablespoon a day as a maintenance dose

My Dad uses a something prescribed by the doctor, but in effect that replaces constipation with diarrhea, whereas I have a normal comfortable stool daily, and feel much better for it.

I also wonder whether my trial drug has further improved things recently, but they were much improved before the trial started.

[ParkinsonsEurope_Jen Administrator EPDA in reply to WinnieThePoo]

Thank you for sharing your experience and tips WinnieThePoo, it is very much appreciated

[pad10 in reply to ParkinsonsEurope_Jen]

I agree with Winnie - i drink a cup a day of kefir, and eat approx 4 cups of vegetables and fruit, (cooked and raw), also whole grains and water. munch on a small to medium raw carrot - that will get things going. its like magic.... but the other things mentioned are really important too - particularly water.

[pad10 in reply to pad10]

.... i forgot i also take 400 mg magnesium citrate (Blue Bonnet)

[LAJ12345 in reply to WinnieThePoo]

I agree too, and try Hardy’s greens and probiotics which combines pre and probiotics in a single dose as well as making the above diet changes.

No sugar

No gluten No GMOS

Eat organic.

Watch this free documentary series it is well worth the time.

It is up to episode 3 and each episode is available for 24 hours.

gmosrevealed.com/trailer/

[Syncletica]

Mag-07 (Aerobic Life) -order from amazon. This has solved bowel problems for me. I take 3 capsules before going to bed each night.

[ParkinsonsEurope_Jen Administrator EPDA in reply to Syncletica]

Thanks for sharing your tip Syncletica!

[PEB69]

B1 is the answer for my husband, was never constipated as such but had issues with going every 2 days instead of daily. When he has taken a B1 break while sorting out dosage, this is the first problem that comes back, and as soon as he starts it again, the same day it's resolved.

[ParkinsonsEurope_Jen Administrator EPDA in reply to PEB69]

Thanks for sharing PEB69

[Lehi]

Nartures sunshine LBS II , 2 capsules one day , 1 capsule next, then take as needed, all natural herbs. New to the group Craig

[ParkinsonsEurope_Jen Administrator EPDA in reply to Lehi]

Thanks for sharing your tip Lehi

[autismcoach]

Jarrow NAC Sustain helps with peristalis for me taken twice a day - once before bed and once in the morning. It provides a time released form of N-Acetyl-Cysteine that is the precursor to glutathione, which is also helpful when taken in the liposomal form.

[ParkinsonsEurope_Jen Administrator EPDA in reply to autismcoach]

Thank you for sharing your tip too!

[NanCyclist]

About 1/2 t of turmeric mixed with something hot each morning is a godsend.

[ParkinsonsEurope_Jen Administrator EPDA in reply to NanCyclist]

Thanks for sharing your tip

[serg]

Oatmeal w/apples in the morning ever other day and you will be ok

[ParkinsonsEurope_Jen Administrator EPDA in reply to serg]

Thanks for sharing your tip

[rjpinette]

My husband has been diagnosed for 2 years now but probably it's been at least 5 (VA where we lived before kept telling us that it was "probably" PD but never definitively said so. When we moved to GA the neuro did the Datscan and that was proof positive that it was. Anyway, my husband uses Miralax generic every day in his protein shake or just in a glass of water and that seems to do the trick. The pharmacist recommended this product daily instead of more drugs. I'm for that since he's on many drugs already.

[ParkinsonsEurope_Jen Administrator EPDA in reply to rjpinette]

Thanks for sharing

[Coot18]

Yes

constipation one of those symptoms of aging

not necessarily PD

just happens that many people with PD are also old

doctor explained to me that most laxatives

simply help water collect in bowels

He advised me to supply my bowels

with moisture and lubricant

by drinking lots of fluids

eating

fruit and fiber

I have been able to avoid laxatives so far

[ParkinsonsEurope_Jen Administrator EPDA in reply to Coot18]

Thanks for sharing

[Dragona]

My husband has opposite problem constant diarrhoea

[Ozziedog2]

I have bowel problems that I haven’t seen on this sight. Dx with gastroparisis.(slow moving GI system).i went to 3 different GI docs. Most had the same suggestion - eat small meals more often of easy foods to digest (soft). No raw fruits or vegetables. No red meats - try easier protein like fish or chicken. I’m having a hard time thinking of foods to eat. I just started with a Dr. Cline at Cleveland Clinics digestive center with hopes he can find a way to help. I lost 40 pounds in the beginning as nothing much moving. Terrible nausea and couldn’t eat. I was taking Domperidine, that helped with the nausea but not with the slow movement. Not legal in the states so I had to order from Canada. Most of the GI docs were trying different laxatives on me, that only gave me diarrhea and didn’t solve my problem. My CC doc is having me do a smart pill study to see what’s happening in my GI tract. Anyone on this site experienced The gastroparesis or the Smart Pill study?

[ParkinsonsEurope_Jen Administrator EPDA in reply to Ozziedog2]

Thanks for sharing!

[Ozziedog2 in reply to ParkinsonsEurope_Jen]

So many of you are suggesting high fiber eating (fruits & veggies. ) I've seen now 4 GI docs and all have suggested high fiber foods like those need to be avoided. I'm so confused and don't know what to do. I used to just eat extra salad, fruits & high fiber cereals and was ok. It's only been the last 3 or 4 years that it's been a big problem. It's not necessarily the PD. I was diagnosed almost 15 years ago. Sometimes the meds gave me constipation. but not like it is now. I'm hoping this specialist at CC can help with this. I just don't know what to try. One doc said use benefiber, another said don't do that, no prune juice, etc. I'm going to try the B1 again. I stopped for a bit because I was feeling anxious and jittery, so I will try again at a smaller dose. I tried 3 500 mg capsules first, then cut it down to 750 mg and still felt funny, I will try just 500 mg this week and see how that goes.

[BUZZ1397]

Fig bars fleet suppositories MiraLAX

[ParkinsonsEurope_Jen Administrator EPDA in reply to BUZZ1397]

Thanks for sharing your tip

[st8farm]

2-4 grams/day B1 HCL. When I stop to adjust my dosage the constipation reoccurs and when I start back on the B1 HCL it goes away in 48 hours.

[ParkinsonsEurope_Jen Administrator EPDA in reply to st8farm]

Thanks for sharing

[rideabike]

Have had severe constipation and SIBO (small intestinal bacterial overload), gastroparesis, all of which is a result of things not moving through the intestines fast enough. I make sure I have a BM every day and do whatever is required, in a mostly natural way, to get results. If it's needed I take Benefibre or a psyllium combo, but seem to be OK with cereal like cooked oats in the am with either ground flax or ground chia, buckwheat or quinoa flakes, hemp seeds, etc. Sometimes I need slippery elm. Cheese is bad for blocking up. Try to eat fibrous meals with veggies and salads as much as possible. The key is keep it all moving! I also cannot tolerate gluten and have been off it 7 years. Used to be lactose intolerant but it has mostly disappeared and don't really know why but I think my gut healed a bit.

I also used up a couple of gallons of aloe Vera juice when things were bad. Very good for the gut. (4 oz. Aloe, 2 tsp. Apple cider vinegar, 1/4 tsp. Baking soda) before eating in the morning or after a meal that doesn't sit well.

Best regards for smooth moves. Ha!

If you or anyone would like gluten free recipe for pancakes and oat waffles just message me and I'll pass them on to you. No internet and using library WiFi so may take a few days to respond.

[ParkinsonsEurope_Jen Administrator EPDA in reply to rideabike]

Thanks for sharing!

[Ozziedog2 in reply to rideabike]

I might try your aloe mixture. I've heard someone else had success with that. Thanks for sharing!

[Cycling8]

1 gram of thiamine (B1-HCL) first thing in the morning. I am following Dr. C’s HDT recommendation for my height (5’ 2”) weight 105 pounds) and disease on set (Dx June 2016). My BM’s was the first improvement I had, occurring 2-3 days after I started HDT.

[Hidden in reply to Cycling8]

Cycling8,

Thank you for posting this as there are forum members who are looking for dosing ideas to get started on HDT while Dr. Costantini is currently unavailable, so all dosing information, dosing tips and actual dosing procedures that other members who are testing or using HDT are using will be exceptionally useful now for many other members!

So you are taking a one gram dose in the morning and no lunch dose at all?

Art

[Cycling8 in reply to Hidden]

Yes, two 500 mg capsules (from Vitacost) in the Morning, no dose at lunch. Dr. C recommended that 3 months ago.

I have seen great improvement in most of my non-motor symptoms but wish my balance would improve more so I could walk independently.

( I was thinking along the same lines as you when I included the details.)

[Hidden in reply to Cycling8]

Yes, definitely useful information for the forum members!

Art

[ParkinsonsEurope_Jen Administrator EPDA in reply to Cycling8]

Thanks for sharing!

[MylovedhasPd]

I wonder if pramipexole caused constipation side effect? Anyone else think this? I do energy work and installed a frequency for constipation. My Beloved actually had no problem in the end. He ate everything he liked especially fruit, (banana every day) and oranges which the nurse advised and it seemed to help enormously.

[Peabug]

I use fiber that is mixed with water and drank. It’s a generic brand but works. It will soften the stool for easier passage.

[Sinker]

For 10 years, upon recommendation from a Doctor, I began eating 1 pkg of MetaMucil cinnamon spice includes 2 fiber thins Every morning dunked into my coffee. Rarely do I skip a day from irregularity. MIRACLE Because I battle those most of my adult life. And I am 76. They work.

[cerstadd]

I’ve had very good results using Fiber Well gummies, taking only one a day.