gastroparesis and PD

[MissRita]

hello again, curious if anyone on here has Gastro paresis along with their PD? Any information would be great. Thanks.

[Boscoejean]

davisphinneyfoundation.org/...

WHAT TREATMENT OPTIONS ARE AVAILABLE?

Although there is no cure for gastroparesis, there are several options you can explore to help manage the condition.

Dietary changes. Minor adjustments to your way of eating can lead to significant improvements in gastroparesis symptoms. Eat smaller but more frequent meals, so your stomach has less food to digest at one time. Drink ample water daily and, as we explain below, always take your carbidopa/levodopa with water! Try to limit foods high in fat and those with indigestible fibers, as these take longer to break down in your stomach. Consider working with a registered nutritionist who can help tailor your eating plan to your needs.

Medication adjustments. Although several medications are commonly prescribed to manage gastroparesis, many interact negatively with Parkinson’s medications, so be sure to talk with your physician about any adjustments. (Commonly prescribed gastroparesis medications include prochlorperazine or chlorpromazine, but both are contraindicated as they can worsen Parkinson’s progression by impacting the central nervous system.) If you don’t already, one crucial medication adjustment you can make is to take your carbidopa/levodopa on an empty stomach with a full glass of water. This helps it move as quickly as possible from your stomach to your small intestine, where it is absorbed.

[MissRita in reply to Boscoejean]

I’ve actually tried to take my CL, over an empty stomach but let me tell you it makes my stomach rock ‘n’ roll so bad and the pain is excruciating it takes my breath away. Mind you I’ve tried every PD medication in the book and they all have to go through the gut and that’s what’s killing me every time I take it.

[Boscoejean in reply to MissRita]

I am sorry this is such a tough situation and seems like no solution to this

[enjoy2013 in reply to MissRita]

Hi again,

Sorry to be late to the party, but I'd like to try helping. For full disclosure, I also have gastroparesis, and being a physician, I used my medical education to keep it as much as I can under control.

So let's start with the end: subcutaneous ldopa is almost here and it is not impossible a trial is recruiting in your area. So if you're fed up with managing your gastroparesis, just go for it.

Otherwise, there is no way around your stomach that is going through your stomach, if that makes sense. This is key!

And gastroparesis is really tough cookie in medical jargon. There's no magic solution. So you really need to be smart, and manage this aggressively.

The problem is that besides going to bed hungry, becoming under-nourished, being weak, spend the day OFF, becoming isolated, eventually your body starts to break down proteins in the brain. And that's bad news. SO:

- to start with, take only small meals, and don't eat unless your stomach is not bloated, and you feel like the food you are swallowing will be welcome in your stomach

- Drinking when you eat: the objective is to keep the food in your digestive tract smooth enough to avoid being stuck, and wet enough for digestive enzymes to access their digestion spots. To do so, drink before each meal but not too much (half aglass to a full glass of water). You would risk to dilute your digestive enzymes.

And, drink a bit during the meal (twice a quarter of a glass).

- pay attention to the impact of every nutrient: for example, fat slows digestion. I think it's been already discussed here on HU in the past for proteins, fat, fibers so I'm not going to repeat it. I'm just going to recommend to keep it in mind when you draw your menu and you find a brand of digestive enzymes to help,

- make sure that your food is cut in small pieces. The size would depend on the severity of your symptoms. "Smoothie " meal is the extreme. I never got there, but many friends do it because they like it, so why not. What complements this is use your teeth! Masticate! Masticate and Masticate!

- and also, have an acid environment in your stomach. The digestive enzymes need it to do their job, and so does the stomach, and others.

So recently I started to take slow release vitamin C. It seems to help. You can also add vinegar for example to your tomato salad.

- Another thing I started to try is to help also the mechanic job of the stomach that is missing, through activation of surrounding muscles. Walking helps, but after dinner I'm usually on the edge of being OFF so going out is not a option. So I go for diverse abdominal exercises

- another thing that helps as well, is to go with one sort of food at a time. Start with the meat for example, 50-100 gr grilled or steamed, no sauce no veg, clean. Much easier to digest.

Then veg, same, clean. With carbohydrates, wait until your stomach is ready (empty) to avoid SIBO.

- I have to say that I have experienced some improvements with high dose B1, and I've read others have had the same experience so maybe you should try that.

I also recommend avoid stopping your exercises routine as I suspect that gastroparesis is one of those things that deteriorate when Parkinson’s deteriorate.

- Finally, mannitol is a powerful laxative so I recommend that also.

The thing is small meals do not trigger the digestive peristaltism, leading to constipation. Hence very important to deal with constipation and mannitol can do a good job for that and in some cases more.

Hope this helps

[Kingsdaughter1]

My diagnosis of gastroparesis came before my PD diagnosis and was labeled as ideopathic (undetermined cause). We now know that it is tied to the PD.

I did the diet changes to no avail. I had pyloric surgery in 9/2017 to help my motility. It helped awhile but soon was struggling with eating and dropped below 100 lbs. In 9/2018, I had a PICC line inserted and received TPN through it nightly for my nutritional needs and in four months had gained the weight back that I needed so had the PICC line removed. Unfortunately, about a year later the weight came off as I had trouble eating again. I was in FL for the winter and could find no doctor to support the TPN therapy. Upon my return home to PA in May, I had a port installed for the TPN which I used for over six months, again regaining my weight.

I have not had to have TPN in two years now. I have kept the port in so if I should need TPN, I am ready to begin. I get the port flushed every two months, a quick out patient procedure. Problem is I have moved to FL & still haven’t found a doctor to support TPN. I can eat just about anything. My only issue is constipation.

I just got a new mobility disorder neurologist and he has recommended that I see a gastroenterologist that he has worked with for years.

[MissRita in reply to Kingsdaughter1]

Hi, thanks for the information. I haven’t been formally diagnosed with GP but I’m 💯 sure I have it. I have all of the symptoms and I’m basically down to a liquid diet. I’m so afraid to eat certain foods as I’m not sure how it will make its way out, give me pain, make me vomit, make my blood sugar shoot through the sky, or make me so panicked that I have a massive anxiety attacks, which I never normally have. I get so scared because the food won’t pass and it literally just sit in my stomach and has no way of moving. I am trying to get scheduled for a Gastroparesis motility test which I’ve had before and it showed that the food moved within three hours and 90% of the food left the stomach. Now mind you that was when my bowels are working better and I could go to the bathroom on my own. Right now I can’t go on my own as I have to use enemas in suppository so I have a feeling that another Gastroparesis motility test will show that I definitely have it now.

[Kingsdaughter1 in reply to MissRita]

Gastroparesis brought on from PD is a difficult disease to live with. In terms of PD meds & gastroparesis, there is a sublingual form of carbidopa/levodopa called Parcopa, that I used for a couple of years and it was effective. You let the pill melt under your tongue and is absorbed through your mouth tissue and bypasses the stomach.

As I mentioned, the pyloric surgery helps the motility. My doctor also wants me to take Miralax daily. I can’t do daily as my gut just doesn’t ever feel “normal” if I take it that often. It certainly helps the motility but I usually only take it 2-3 weekly.

I wish you the very best on getting your diagnosis and then finding treatment that works for you.

[kaypeeoh]

I went through several exams looking for reasons for gastroparesis. The bottom line was no problem with stomach emptying but a problem with retained stool. Was prescribed Motegrity. It stops diarrhea unlike other prescriptions. It can still slow things down enough that I need a Bisacodyl tab to help evacuate the colon.

[kaypeeoh in reply to kaypeeoh]

The Squatty-potty miracle! I'd heard of the squatty potty years ago but thought it was a dumb internet scam so I never tried it. Then at my last MRI and checkup, the doctor and a nurse both recommended it. I ordered one from Amazon. And something worked. After three days without a BM I tried it. The result was so much stool came out that it plugged the toilet. I poured a cup of dish soap into the toilet and I'm letting it soak in now.

As far as the MRI it says no changes seen. I was diagnosed with MS years before the PD but so far no new lesions.

The latest drug is Motegrity. Motegrity plus the squatty potty seems to work. The doctors said to take a bisacodyl also if the Motegrity alone wasn't enough. Bisacodyl is a stimulant-laxative. That means it causes cramping which helps squirt out the stools.

[kaypeeoh in reply to kaypeeoh]

The dish soap worked; After an hour of soaking I was able to flush and empty the toilet. And flushed several times more to be sure solid stools were gone.

[LeharLover62]

Hubbies system works about 1/3 rd of the speed of healthy people. But that causes cronic constipation and doesn’t sound as bad as what you are dealing with in terms of weight loss and food retained in the stomach.

For him, his MDS proscribed the following to get the bowels moving which might help others: Florastor probiotic (or PS128), and FOS prebiotic powder. Then after a few weeks add Psyllium husk gradually. He’s now having normal bowel movements every day or two, and I feel it must be helping his food absorption.

[dkdc]

Yes. Motegrity is helpful usually