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 gut/stomach/bowl pain 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post gut/stomach/bowl pain
Hello Everyone:

My mother is always complaining of seriously debilitating bowl/gut/stomach pain. I am not entirely sure which it is for her since it seems like it can be any of these when she is in pain and that she doesn't distinguish well between them. I have been trying to get some answers concerning this pain for two years now. It seems to come and go - but she seems to have it nearly every day for a certain period of time (sometimes short - often long). Does anyone have experience with this? I am not at all sure that it isn't withdraw from her Stalevo between doses, but the doctors have tried to address this by adding some carbadopa levadopa inbetween the stalevo med times. I also have to note that since my mother has a lot of behavioral problems, we have had to put her into assisted living which has made it impossible for us to perfectly monitor the times that she is getting her medications. She has no sense of time passage, so when she complains that they aren't giving them to her on time, it is not something that I can trust. I do know that they often "use" their legal hour grace period with my mother's medications despite the fact that I have tried over and over to explain to them that it is critical that she get the medications exactly when they are due. She is in her third Assisted Living facility and I have never been able to get anyone to give her medications at the right time all of the time. This is a source of frustration. However, I am not entirely convinced that the gut pain and the occasional late medication entirely explains my mother's problems. We have had every test done that her GP can think of and the results are always normal. If anyone has some information that would be helpful, I would be very grateful.

Liz


Sun Mar 25, 2012 1:39 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: gut/stomach/bowl pain
Liz,

If it's not an off-time symptom, it might be gastroparesis. You can do a search here on this symptom. Perhaps the neurologist can provide a referral to a GI doctor.

Can the family hire someone to administer medication? That person can also keep a log of her pain, when she eats, and when medication is given.

Robin


Sun Mar 25, 2012 11:22 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: gut/stomach/bowl pain
Thank you Robin for the name of the condition. It does sound like gastroparesis to me (very much so in fact). My sister points out that she has, however, always had some version of gut problems even when we were kids. I wonder if having this earlier in life could have been predictive of her current health problems. They are a lot more painful now - though - causing her hours and hours of intense pain. Looking through the literature that I saw on this condition, though, I am not very hopeful that we will find something that helps her much. She isn't going to change her diet no matter how hard I try to make the connection for her and every time we try a new medication it seems to either not work or she has a bad reaction to it. I don't want to feel so defeatist about it, but so far we haven't had a lot of luck with finding ways to improve my mother's quality of life much. Ah well - good to have a name for her gut pain and good to be able to ask the doctors specifically about what can be done. Thank you so much.

Liz


Mon Mar 26, 2012 8:34 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: gut/stomach/bowl pain
Many in our support group do get relief from domperidone, which they purchase online from a Canadian pharmacy. It seems to be the only thing that helps.


Mon Mar 26, 2012 1:16 pm
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Joined: Fri Oct 28, 2011 1:31 pm
Posts: 29
Post Re: gut/stomach/bowl pain
My mother takes stalevo 200 every 4 hours during the day. When the medicine is ending and before her next dose (off-time), she has trouble breathing, drooling, and bladder/abdomen pain. She feels like she has to go to the bathroom - several times in a row. When her next dose of stalevo kicks in, she is fine. We have seen a gastroenterologist and a urologist. She has been on several different medicines for the breathing and the bladder pain, but nothing really works except time (when the next dose of stalevo starts to work). She has also lived in several different ALF's and most of them don't understand the importance of the timing of her medicine.


Fri Apr 06, 2012 11:31 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: gut/stomach/bowl pain
Dear Marie:

Thank you for posting. Your post could have been my post. It is so reassuring to see that someone else is having a similar experience. I sometimes feel like people, especially the ALF, think my mother is making up her pain and that we should be doing something about it. I think it has a lot to do with the stalevo down time. So good to know that this is also someone else's experience. The real question always seems to be, how to get my mother the care she needs within the ALF system. This is very hard to figure out.

Thanks again for posting - Liz


Wed Apr 11, 2012 8:12 am
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