Still constipated. Just had colonoscopy and endoscopy trying to figure out what’s wrong with me. Nothing bad found. Everyone frustrated including doc. Doing the right things. Pills and other stuff not working. Losing lots of weight also.
If….you aren’t eating much, it’s likely this could result in constipation and weight loss. Have Doctors commented on this.
They haven’t said that but I feel like I’m eating ok. Just not snacking that much. You may be right. It’s just hard to eat more when you don’t expel it. I’m at least eating enough to maintain. Maybe not.
Have a good think about what you do eat…maybe change things around…add foods you don’t usually eat. Sometimes the digestive system seems to stall for no apparent reason…and needs a ‘jump start’.
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Thanks for the advice. I’ll try it.
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Having blood test tomorrow. Will post results.
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All blood test results were normal. Also gluten not a problem.
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Good news…
Are you any better with constipation
Yes I hope. Seems to be anyway. Thanks for asking.
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The more I think about it, the more I think that constipation is connected to Ataxia in our case.
This link explores the link between ‘brain and gut’….it is probable that more research needs to be done.
I’ve always had a problem with constipation….my appendix burst when I was 5yrs old….and it was drummed into me not become constipated 
Consequently it occupies my mind even now.
https://www.sciencedirect.com/science/article/abs/pii/S1353802021003345
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Just make sure you drink a lot of water and eat fruit. Also eat fiber. My Gastro MD has me eating Raisin Bran for breakfast. Also a good idea to limit dairy products.
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Thank you for starting this thread years ago and for keeping it updated. I read through the whole thing yesterday and found it so helpful. You and all the other contributors described the frustration and the experience so well, I stopped feeling so alone. I have SCA6 and for the last 4-5 years every July/August by digestive system grinds do a halt. It sometimes happens otherwise too but this is the worst time every year. Like others have said I had some constipation when I was much younger but the past 20-30 years through diet and water and exercise things were working fine. Then as my other Ataxia symptoms have worsened in the past few years, I started having digestive issues. I can go for a month or more without having the urge to go. I just have to guess when I might be able to go. I attended a Johns Hopkins presentation last week and asked the neurologist if she had seen “slow motility” in Ataxia patients. She said she had seen it more often in people with Parkinson’s Disease but she had also seen it in people with cerebellar ataxia. I am thinking of seeing a gastroenterologist but it seems from this thread that they don’t really have the answers either.
Alice, you mention ‘a month’ can elapse without having the ‘urge to go’……it is probably time to have this investigated.
It really makes me uncomfortable if ‘I don’t have a regular routine’ and by this I mean every day. Of course not everybody feels the need on a daily basis…there are obviously acceptable variations that don’t need any intervention.
I was having to rely too often on a laxative…so I started drinking sips of water between mouthfuls of food…and it has made a huge difference for me.
Inactivity is inevitable with many Ataxias …and this is bound to have a knock-on effect with a sluggish digestive system. I don’t cope with SCA6…but sometimes I really need to force myself to move more.
Beryl is completely correct. Make an appointment ASAP with a Gastro MD. A month is completely too long.
I’m in the USA also. New York to be more exact. I also see a Gastroenterologist for the same problem. He has tried many combinations of drugs until he found the combination that seems to work. I tried Linzess which didn’t work. Metamucil which didn’t work. I don’t want to go through all I tried so I’ll get to it.
Right now I’m taking Trulance every morning plus a capful of Miralax in Gatoraid late afternoon. A few days after starting, I started doing #2. Drink at least 8 glasses of WATER every day all day and night even if you’re not thirsty. I find that green grapes really help since they contain a lot of water and fiber. Just remember to drink water while eating the grapes to wash down the fiber! Fiber is very good for constipation. Greek yogurt is also good. Drinking prune juice is also good.
I’ve had a Catscan of the pelvis, a endoscopy and a Colonoscopy- all were normal.
My dr. said to double the dosage of psyllium that I take every 24 hours. Also, I’ve changed to psyllium gummy’s. Not for medical reasons, they’re just fast and yummy. Also, probiotics work for me. Kevita brand is great but needs refrigeration. Sienna is a last resort if a laxative is required. It’s effective but very gentle and takes about 8 hours to kick in.
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It’s useful to know what has helped with this common problem.
How are you other otherwise…
Mostly OK, except for the Ataxia. The above helps but not sure if it’s the full answer. Drinking tons of water seems to be the correct solution for most folks. How are you BTW?
I had a fall yesterday…thankfully nothing broken but I still feel ‘all shook up’.
Basically I was ‘juggling too many balls at once’…became over confident and lost concentration…a recipe for disaster Today has been awful…fatigue and continued poor concentration.
Apart from that…same old - same old
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Simply this, falling sucks big time. I know because I’ve done my share of falling. I have my fingers crossed for all of us! 
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