I am 11 years into my PD journey and the challenges are coming thick and fast now.
Recently when my meds wear off, my stomach just stops digesting food, (my meds only give me 1 &1/2 hours of on time now.) my stomach fills with gas and swells up , its SO painful.
Taking more meds, takes usually an hour of misery to become effective.
Its called Gastroparenthesis aparrently and is a symptom of PD.
I've begun eating 4 small bland meals, each day, to try and help relieve the load on my digestive system, but have lost a lot of weight and am almost annorexic.
Is anyone else experiencing this ? Its a nightmare.
Appreciate any advice.
Written by
skinnibean
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GINGER - 5 to 10gms (grated and blended in a blender into a solution by adding water) 100ml -150 ml solution - helped with stopping nausea in a couple of days. Remember that Ginger is a blood thinner; Supposed to help in regulating blood glucose.
Best to make ginger solution and keep it refrigerated so that it can be used on a daily basis. (I take about 4 pounds of fresh ginger root, wash it nicely, grate it, then blend it with water - use about 1 gallon of water and use a sieve to get the ginger solution after squeezing the residue for any content, before throwing away the waste; then use around 150 ml of this solution); Feel free to use the residue if you can handle it and get more fiber content.
Yes I am also having gut issues. I have had diahorrea for 2 1/2 yrs, had 2 x coloscopies, numerous ultra sounds and x rays. I get pain and discomfort in the gut. Ive tried fodmap diet and been gluten free for years.
I don't have any direct experience and I'm fairly new to PD. For what it's worth I mention, bave you tried an elimination diet?
If a particular food is tough on your digestion and your digestion has other stress factors on it such as pd, then cutting it out might help? For instance I get bloated if I eat a lot of bread.
The way to do it is make a list of possible foods that you suspect. Take a few. And eliminate those completely using label reading removing all variations of them, for a week or two. Then try each one and wait till the next day. And see if you have even a little bit of reaction. Then for another round eliminate some of the other options and go back to eating these.
I've known people to do diet elimination by eliminating from months. It's not necessary. You won't see an improvement in your health that's dramatic in a week. But if you see a little bit of reaction, and then cut that food out for a longer term, you are very likely to see digestive improvement.
When I had cfs i dramatically improved my health with this and I knew several people who did. Very little of my reactions were in my stomach. But for bread it was. So I've been careful since and aware when I eat too much bread...
I've been through it all. Even had a two week period following some abdominal surgery when gut peristalsis STOPPED altogether. I couldn't eat anything because I would vomit. It's called "paralytic ileus." Pain reminded me of my 3 experiences with natural/unmedicated childbirth. Then I developed SIBO (small intestine bacterial overgrowth) in which I had acute diarrhea. Saw a nutritionist who guided me through an elimination diet. Still trying to regain the 30 lbs that I couldn't afford to lose during this ordeal.
It sounds like you are at the Gastroparesis stage, characterized by extreme slow gut transit time. Try to get your hands on domperidone, a prokinetic agent. It has worked wonders fot many PwP. NB: not FDA approved in the US. In any country, get a cardiologist clearance before using, since one study found irregular heartbeats associated with increased risk of sudden cardiac death at high doses. (That's not why it isn't FDA approved; that's because it helps lactation in nursing mothers, and no drug company is going to support a generic drug approval through an expensive FDA approval process, especially given concerns about off-label use in nursing mothers.) Domperidone AT THE LOWEST EFFECTIVE DOSE has little risk and allows me to improve gut transit time. It might help you immensely.
I was diagnosed with gastroparesis about three years before getting my PD diagnosis. I have been through it all with my gut. A couple of years ago I dropped down to 87 lbs because I basicly could not eat. I had to go on TPN which was feeding myself via a port in my chest every night for ten hours. I did this for seven months. It gave my gut rest and put the weight back on me. I have been off of that for over 1.5 years and I now eat normally. Prior to all of this, I also had pyloric surgery to open my pylorus because my stomach was not working to push food down. So my food now moves down by gravity and I have little issue at all. I eat what I want, when I want. My only issue is with constipation but I won’t complain about it because I am so thankful that I can eat normally again.
I was diagnosed with PD three years ago but never confirmed til I had a DATScan earlier this year. So I have gastroparesis; Whatever I eat sits in my stomach for much of the day. The docs won't prescribe anything without more info. Tomorrow I go in for a Smart Pill treatment. I swallow the pill and carry a receiver on my belt for the next 5 days. The pill sends data wirelessly to the receiver collecting info as the pill moves through my gut. Ultimately the pill is 'shat' out. After swallowing the Pill I'm having Anorectal Manometry. I've been preparing for this for the past several days by stopping most medications and eating low fiber meals. I'll have to empty two fleet enema bottles then fill them with tap water then empty them into the rectum. They'll insert a catheter and a deflated balloon into the rectum, then inflate the balloon to trap it. Then they'll tell me to 'bear down' as if having a BM. The catheter has pressure sensors to that tell how much pressure I'm producing while bearing down. Eventually I force the balloon out and I'm done and can drive home.
As miserable as that sounds, it's not the worst thing doctors have put me through.
Hubby started having gut issues in particular extreme constipation after increasing his levodopa and changing to the slow release madopar. Reducing it again has completely fixed this again. It was too much levodopa that caused his issues.
We find alternating a meat or fish night with a beans or lentil night for dinner tends to keep it under control. The vegetarian meal seems to flush the meat through. Too many meat nights in a row can slow things down.
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