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Bad constipation with Parkinson’s

Posted by susan62 @susan62, Aug 25, 2019

Hi everyone. Been awhile since I’ve been involved. My Parkinson’s has been doing pretty well for 2/3 of a year now with the exception of REALLY, REALLY bad constipation!!! I have been drinking a lot of water(60 oz a day), walking 5 days a week(3-4 miles each day), and trying to eat high fiber foods. Nothing seems to work much. I have taken Magnesium Citrate on a couple of occasions and tried an enema on a number of occasions too. These work for a short time, but then it is the same old, same old thing. I’ve tried Ducolax and a number of other stimulant laxatives. Same result. Not much. Last week I took the Magnesium Citrate again and this time when I drank it I had a horrible burning feeling in my upper GI tract. Had to go to ER. Did CT scan and could find nothing. Saw a GI doctor at the Mayo a few months ago and he had me do some tests and determined that I most likely have Bowl Evacuation Disorder. He ordered evaluation to see if I am a candidate for therapy. I haven’t scheduled that yet. I plan on calling his office tomorrow and request to see him again. I just feel so awful. Constipated most of the time, nausea, bloated, especially in am, and cramping. I wake up every morning feeling very bloated with considerable cramping. This is NOT normal!!! So that is my sob story. Am I going crazy? I am sincerely starting to think so. Has anyone had or have a similar experience? Your input would be greatly appreciated.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 6 9:51am
In reply to @southwest "thank you I don’t want to get acustomed or dependent on stimulants; and do want a..." + (show)
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thank you
I don’t want to get acustomed or dependent on stimulants; and do want a regimen consisting of something that they’ve heard of and are not suspicious of, in case of hospitalization.
500mg magnesium citrate usually is enough, sometimes with an additional 250mg magnesium oxide tablet, but they won’t let me take it in hospital. Brand names on the other hand like miralax or metamucil have them all nodding in agreement, nobody pushes back on those brand names

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@southwest

I agree with you on the use of magnesium supplements. I have found a product called Calm. It is a powered magnesium product that you mix with water and take at bedtime. It really works well for constipation, and I have also found that it promotes a good night's sleep.

If the magnesium isn't enough, I add some Miralax to the nighttime routine.

Regarding peristalsis, regular activity will help. A regular exercise plan is important for all aspects of PD. Abdominal massage can be a great benefit as well. If you search on YouTube, you will find demonstrations on abdominal massage.

It does take a variety of products and activities to keep regular with a PD diagnosis. You are asking great questions!

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jflamini | @jflamini | May 6 10:40am

I have had some good success with a natural remedy. First thing in the morning before I have anything to eat or drink I have about eight ounces of warm water mixed with a touch of Himalayan salt and four tablespoons of lemon juice. I wait at least 30 minutes before I eat or drink anything. Might take a few hours to see any impact each day. You will need to try this for several days and up to a week before you begin to see some results.
Good luck, Joe

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bmfoster | @bmfoster | May 9 7:04am
In reply to @southwest "thank you I don’t want to get acustomed or dependent on stimulants; and do want a..." + (show)
Profile picture for southwest @southwest

thank you
I don’t want to get acustomed or dependent on stimulants; and do want a regimen consisting of something that they’ve heard of and are not suspicious of, in case of hospitalization.
500mg magnesium citrate usually is enough, sometimes with an additional 250mg magnesium oxide tablet, but they won’t let me take it in hospital. Brand names on the other hand like miralax or metamucil have them all nodding in agreement, nobody pushes back on those brand names

Jump to this post

@southwest
Generic options also available at Walmart (Clear Lax) and through Amazon (Polyethylene glycol). Good luck.

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goatgirl28 | @goatgirl28 | May 16 4:49am

Want to let everyone know - On Thursday, May 21, at noon eastern, The Michael J. Fox Foundation will offer a 1-hr webinar on Constipation and PD. http://www.michaeljfox.org

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Teresa, Volunteer Mentor | @hopeful33250 | May 17 6:01am

For those who might be interested in this webinar on Constipation and PD, here is the link where you can register:
https://www.michaeljfox.org/webinar/parkinsons-and-constipation-candid-conversation

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kshansen | @kshansen | May 17 9:59am

I'm not sure that what I'm feeling is constipation or something else. Thing is I do have a bowel movement just about everyday but also never feel completely relived after that. Often if I can just fight through the discomfort I still have after the BM it seems to be down to a 1 or 2 on a pain scale of 1 to 10 if that makes sense.

I have not been on any regular routine of Miralax or anything else, maybe that would help? The worst thing at times for me is not being able to put in words how I hurt. Also if I manage to get through the worst parts/times wife thinks I'm doing good that day when I may have had a horrible morning.

The other problem I have is only seen the doctor, I believe, twice since I was diagnosed by him almost a year ago and my next appointment has been postponed twice for the next visit! Not sure if that is normal especially for what I would call a newly diagnosed patient.

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jtes | @jtes | May 18 6:35am
In reply to @kshansen "I'm not sure that what I'm feeling is constipation or something else. Thing is I do..." + (show)
Profile picture for kshansen @kshansen

I'm not sure that what I'm feeling is constipation or something else. Thing is I do have a bowel movement just about everyday but also never feel completely relived after that. Often if I can just fight through the discomfort I still have after the BM it seems to be down to a 1 or 2 on a pain scale of 1 to 10 if that makes sense.

I have not been on any regular routine of Miralax or anything else, maybe that would help? The worst thing at times for me is not being able to put in words how I hurt. Also if I manage to get through the worst parts/times wife thinks I'm doing good that day when I may have had a horrible morning.

The other problem I have is only seen the doctor, I believe, twice since I was diagnosed by him almost a year ago and my next appointment has been postponed twice for the next visit! Not sure if that is normal especially for what I would call a newly diagnosed patient.

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@kshansen It takes a while to get all this figured out. My husband was diagnosed 6 years ago. He now takes a Miralax gummy daily and has MiraFast on hand when he needs an actual laxative.

There is a shortage of Neurologists in this country. We switched from a general local neurologist to a Movement Disorder Specialist Neurologist at the nearby teaching hospital. For a few years he has seen the doctor’s NP every 6 months who is excellent. He can reach her by email if he needs a medication adjustment.

If there is any kind of local Parkinsons support group, it’s a great place to share ideas, compare notes, etc.

Best of luck.

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Teresa, Volunteer Mentor | @hopeful33250 | May 18 7:00am
In reply to @kshansen "I'm not sure that what I'm feeling is constipation or something else. Thing is I do..." + (show)
Profile picture for kshansen @kshansen

I'm not sure that what I'm feeling is constipation or something else. Thing is I do have a bowel movement just about everyday but also never feel completely relived after that. Often if I can just fight through the discomfort I still have after the BM it seems to be down to a 1 or 2 on a pain scale of 1 to 10 if that makes sense.

I have not been on any regular routine of Miralax or anything else, maybe that would help? The worst thing at times for me is not being able to put in words how I hurt. Also if I manage to get through the worst parts/times wife thinks I'm doing good that day when I may have had a horrible morning.

The other problem I have is only seen the doctor, I believe, twice since I was diagnosed by him almost a year ago and my next appointment has been postponed twice for the next visit! Not sure if that is normal especially for what I would call a newly diagnosed patient.

Jump to this post

Hello @kshansen

Regarding doctor appointments for PD. I can only share from my own experience; however, when I was first diagnosed, I was seen after a month of taking medication (carbidopa/levodopa). After that, I had an appointment every six months. However, if I were having problems (like falling), I would contact the doctor's office through the patient portal (or by phone) to explain the problem, and I would usually be seen within a few days.

You seem to be having abdominal discomfort. Could you describe that a little? For example, is it like cramping or perhaps more severe pain?

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1 reply
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kshansen | @kshansen | May 18 9:31am
In reply to @hopeful33250 "Hello @kshansen Regarding doctor appointments for PD. I can only share from my own experience; however,..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @kshansen

Regarding doctor appointments for PD. I can only share from my own experience; however, when I was first diagnosed, I was seen after a month of taking medication (carbidopa/levodopa). After that, I had an appointment every six months. However, if I were having problems (like falling), I would contact the doctor's office through the patient portal (or by phone) to explain the problem, and I would usually be seen within a few days.

You seem to be having abdominal discomfort. Could you describe that a little? For example, is it like cramping or perhaps more severe pain?

Jump to this post

@hopeful33250
Not sure how to describe the discomfort other than feeling like I need to have a BM but nothing happening, try not to spend over five minutes on the toilet at one time. I can wake up a couple times in the night to pee and other than some moderate aches in legs or arms gut feels pretty good. The worst time is say 6 am just before and after I get up, That can last till or past 10 am.

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1 reply
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Teresa, Volunteer Mentor | @hopeful33250 | May 18 3:23pm
In reply to @kshansen "@hopeful33250 Not sure how to describe the discomfort other than feeling like I need to have..." + (show)
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@hopeful33250
Not sure how to describe the discomfort other than feeling like I need to have a BM but nothing happening, try not to spend over five minutes on the toilet at one time. I can wake up a couple times in the night to pee and other than some moderate aches in legs or arms gut feels pretty good. The worst time is say 6 am just before and after I get up, That can last till or past 10 am.

Jump to this post

@kshansen

You may consider talking to your PCP regarding this discomfort. It might be related to some other GI problem. An appointment with a GI specialist might help determine the cause of this discomfort.

Will you keep posting and let me know how you progress in finding an answer to this problem?

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