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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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kshansen | @kshansen | May 18 4:30pm
In reply to @hopeful33250 "@kshansen You may consider talking to your PCP regarding this discomfort. It might be related to..." + (show)
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@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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@hopeful33250
I will try to remember to reply when I get any info, was told by Gastro doc today to call after first of the month to see about an appointment.

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bmfoster | @bmfoster | May 19 6:43am
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 is so important to get a GI evaluation with colonoscopy to rule out "scary" causes of the symptoms you describe. I had both upper and lower GI evals done and input for long-term management of my slow gut from my gastroenterologist. It is also so important to be your own advocate - read, take advantage of online seminars, etc. and be well informed. Keeping a journal with symptoms, diet, etc. also helps your physician to try and make sense of your symptoms. If you have a component of autonomic nervous system dysfunction - there are other non-GI symptoms that will be present too (loss of sense of smell, urinary urgency, orthostatic hypotension, etc.) Good luck and hang in there while your workup is in process - it takes time.

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bern7475 | @bern7475 | May 20 6:19am

I have found success with 6 oz of prune juice and a tsp of butter warmed in the microwave until butter melts. It works within 1-2 hours. I pinch my nose to drink it 😂 but it works like a charm.

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goatgirl28 | @goatgirl28 | May 22 4:50am

Well I'm embarrassed! Yesterday's webinar was quite disappointing. In addition to the tech difficulty, my only take away was go see another dr and I missed one more early warning sign.

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Teresa, Volunteer Mentor | @hopeful33250 | May 22 10:01am
In reply to @goatgirl28 "Well I'm embarrassed! Yesterday's webinar was quite disappointing. In addition to the tech difficulty, my only..." + (show)
Profile picture for goatgirl28 @goatgirl28

Well I'm embarrassed! Yesterday's webinar was quite disappointing. In addition to the tech difficulty, my only take away was go see another dr and I missed one more early warning sign.

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@goatgirl28
No need to feel embarrassed! I had an appointment and was only able to join the webinar for the last 15 minutes, but I found the presenters informative. If you only come away with one helpful nugget of information, it is a good investment of time.

If a recording of the entire webinar is made available on their website, I will post it in this discussion group.

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