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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.

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susan62 | @susan62 | Dec 27, 2019
In reply to @januaryjane "Have you ever been diagnosed with pelvic floor dysfunction? I have a combo of this with..." + (show)
Profile picture for januaryjane @januaryjane

Have you ever been diagnosed with pelvic floor dysfunction? I have a combo of this with stc. Might be something to look at. You can try therapy for it. The only thing that gets me to have bm is coffee/caffeine, stool stimulants, enema or suppository. Sometimes if i drink mag citrate. But will still have all the discomforts, gas, bloating, cramping. Ive tried most of the pills without luck, all the mixes. Though dr thinks miralax twice a day and low fodmap diet are the best.

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Hi January Jane. WOW! I am blown away by your post. Everything you say you experience with the constipation and the things you do to cope with it are dead on with me. As I say, ditto, ditto, ditto and ditto again. Yes, I was just recently diagnosed with pelvic floor dysfunction and am getting set up to have the therapy. Both my doctor and therapy nurse say I am a really good candidate. I am willing to try anything. Thanks again for sharing your experience.

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1 reply
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Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 24, 2019
In reply to @oronogo "My Mayo doctor told me to use warm prune. I warm it in a cup in..." + (show)
Profile picture for oronogo @oronogo

My Mayo doctor told me to use warm prune. I warm it in a cup in the microwave, just like you warm coffee. It must be warm.

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HI, @oronogo - did your doctor happen to mention why he or she suggested prune juice that is warmed, specifically?

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januaryjane | @januaryjane | Dec 23, 2019
In reply to @lisalucier "Thanks for these tips, @januaryjane. I believe from what you've mentioned elsewhere on Connect you are..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Thanks for these tips, @januaryjane.

I believe from what you've mentioned elsewhere on Connect you are wondering about the possibility you could have Parkinson's or something else neurological? Is that correct?

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Yes, maybe neurological. I dont think its Parkinson's, but was referred to their page because I had mentioned experiencing inner tremors recently, at least that is what they sound like to me. I have raynauds, pins,needles, cramping or numbness in feet and hands on and off. This year started experiencing heavy hypnagogic hallucinations.

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oronogo | @oronogo | Dec 23, 2019

My Mayo doctor told me to use warm prune. I warm it in a cup in the microwave, just like you warm coffee. It must be warm.

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3 replies
Profile picture for Lisa Lucier, Moderator
Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 23, 2019
In reply to @januaryjane "Have you ever been diagnosed with pelvic floor dysfunction? I have a combo of this with..." + (show)
Profile picture for januaryjane @januaryjane

Have you ever been diagnosed with pelvic floor dysfunction? I have a combo of this with stc. Might be something to look at. You can try therapy for it. The only thing that gets me to have bm is coffee/caffeine, stool stimulants, enema or suppository. Sometimes if i drink mag citrate. But will still have all the discomforts, gas, bloating, cramping. Ive tried most of the pills without luck, all the mixes. Though dr thinks miralax twice a day and low fodmap diet are the best.

Jump to this post

Thanks for these tips, @januaryjane.

I believe from what you've mentioned elsewhere on Connect you are wondering about the possibility you could have Parkinson's or something else neurological? Is that correct?

REPLY
1 reply
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januaryjane | @januaryjane | Dec 22, 2019

Have you ever been diagnosed with pelvic floor dysfunction? I have a combo of this with stc. Might be something to look at. You can try therapy for it. The only thing that gets me to have bm is coffee/caffeine, stool stimulants, enema or suppository. Sometimes if i drink mag citrate. But will still have all the discomforts, gas, bloating, cramping. Ive tried most of the pills without luck, all the mixes. Though dr thinks miralax twice a day and low fodmap diet are the best.

REPLY
2 replies
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019

Here is another video from the Davis Phinney Foundation about non-motor symptoms of PD which include sleep problems, GI tract problems, etc.

The Parkinson's You Don't See: Cognitive and Non-motor Symptoms

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susan62 | @susan62 | Aug 27, 2019
In reply to @hopeful33250 "Hi @susan62 You are certainly not going crazy. Constipation is certainly part of Parkinson's. It is..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hi @susan62

You are certainly not going crazy. Constipation is certainly part of Parkinson's. It is one of the problems associated with PD. You are certainly doing all of the right things (water, high fiber, exercise) you might add to this stool softeners such as Colace as well as Miralax. Many PD patients have been told that they can use Miralax on a daily basis if needed. You should check with your PCP or neurologist to see what their recommendation would be for you.

Exercises such as bending over at the waist after meals can be helpful as well. Here are some Youtube videos with specific exercises for constipation,
https://www.youtube.com/results
Here are links to additional information from various websites:
https://www.apdaparkinson.org/article/constipation-parkinsons-disease/
https://www.michaeljfox.org/news/constipation
https://www.mayoclinic.org/diseases-conditions/constipation/diagnosis-treatment/drc-20354259
You might also check out the discussion groups in our Digestive Health group,
https://connect.mayoclinic.org/discussion/slow-transit-constipation-and-surgery/
Everyone with PD eventually finds their own routine that will help with constipation.

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Thanks so much Teresa! You always have such good information and advice! As you have read(I would imagine) my replies to the others who have written me, I have done the Miralax thing with very little success. My stools aren’t hard and dry, but soft even without the Miralax. Just doesn’t work. Will definitely watch the videos today that you have sent. You are a GREAT mentor!!!

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susan62 | @susan62 | Aug 27, 2019
In reply to @lisalucier "My son didn't take polyethylene glycol 3350 (Miralax) related to Parkinson's, but sure did have terrible..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

My son didn't take polyethylene glycol 3350 (Miralax) related to Parkinson's, but sure did have terrible constipation when he was littler, more due to not getting a lot of fiber with his picky eating habits. The doctor prescribed an increase at one time which my mother-in-law warned me about. I figured that it was fine, but he had a definitely messy situation that could have been a real embarrassment. So, my observation is that slow changes might be wise.

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Thank you Lisa! As you can see from my other replies, I have tried Miralax daily at my GI doctor’s suggestion, for numerous weeks from time to time. Very little if any relief. My stool is soft enough, not anything like diarrhea, even without the Miralax, but it just won’t come. I feel stuffed. Sounds strange, but I find myself wishing I had diarrhea from time to time. Sounds pretty sick to say this, doesn’t it.

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Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019

Hello @susan62

I would encourage you to take a look at the Davis Phinney website and Youtube videos. The Davis Phinney Foundation provides a free book for PD patients. To give you a little more information, I've provided a link to a Davis Phinney Facebook video that addresses GI problems and PD. Take a look and let me know if you have learned something more about this situation.

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