Gastroparesis and Nutrition - Please Help!

[Riley]

I have developed severe gastroparesis essentially overnight. I am panicking and desperate to get some nutrients in my body. I tried ensure plus, and I had a horrific reaction to it. Does anyone have any suggestions for a PWCFS friendly high nutrient powder or liquid?

I ordered some feeding formula from Kate Farms, but after my ensure experience I am not optimistic. It will arrive in a couple of days. I am able to drink 4-5 cups of skim milk throughout the day so I believe I could drink some feeding formula if I found a tolerable one. Problem is I’m extremely sensitive to everything, and 500 calories of skim milk and baby food is not going to cut it!

I’m limited to 4 cups of liquid and 3/4 cup purée per day. What can I do? Is a multivitamin a good idea?

If you guys could tag or refer me to a member who has experience with this problem or feeding formulas please do.

Maybe I should take a breath, it’s only been three days? Still I am bedridden and my diet was the last thing that I had control of and nothing like this has ever happened to me before. I was spared the gut problems of this illness for almost 15 years until recently when I developed IBS and now gastroparesis.

 

[ljimbo423]

@kangaSue is very knowledgeable about gastroparesis. I don't know how much she knows about nutrition with it.

Best of luck!

 

[Howard]

I've been utilizing Kate Farms Peptide 1.5 for the past 18 months and have had no problems with it whatsoever. I could not handle any other formula (including Ensure), so this could very well work for you.

I utilize 3 bottles per day (via jejunostomy tube), as I suffer from severe gastroparesis myself. I cannot handle ingesting any fluids at all, but up until three months ago I was able to ingest 500 calories of solid food per day.

Please let me know if you have any additional questions. As my energy is extremely limited, I may not respond immediately.

Hang in there,
H

 

[Riley]

I've been utilizing Kate Farms Peptide 1.5 for the past 18 months and have had no problems with it whatsoever. I could not handle any other formula (including Ensure), so this could very well work for you.

That’s great to hear! That’s the one I ordered.

 

[JAH]

You might take a look at Orgain. I found their high protein formula preferable to ensure. They have a few different varieties, including vegan, maybe one would work for you. I think you can get a single bottle to see if you can tolerate it.
Good luck, I lost a lot of weight and know how rough gastroparesis can be. It’s taken me years to get back to a semi healthy weight, but things did get better-not perfect-for me over time.

 

[Judee]

Whole foods has sheep yogurt that has only sheep milk and the cultures. It is full fat I believe and with 8 grams of protein per serving. My mom couldn't have cow's milk dairy but did okay on this. We mixed seedless jam in it for flavor.

She didn't have gastroparesis but she did have diverticulitis and ended up in the hospital 3x because of that even though we tried to be very careful with her diet.

 

[kangaSue]

Best thing for gastroparesis is to just not put anything through the stomach but that's not a practical solution without some sort of feeding tube support.

Every individual is different though and it can take a lot of trial and error to figure out what you can or can't tolerate, and that's often a moving target just to make life more difficult. Low fat, low fiber, little and often is a strategy that many people with gastroparesis have to make do with.

Bone broth is something of a survival food that can tide you over for a while if tolerated. 800 calories a day though is enough to keep you in survival mode for a long time, I've been doing that for the last 4 years now.

Kate Farms Peptide offering is up there as one of the best products to use though but again, it doesn't work for everyone. Haven't tried that one myself but I don't tolerate the other peptide types I've tried before, nor the Kate Farms non-peptide varieties for that matter.

What else have you got going on with this (diarrhea, constipation, POTS, abdominal pain etc)? Developing gastroparesis overnight is something that mostly occurs in combination with picking up a viral infection, or in some cases it can be the result of starting a new med recently.

 

[sb4]

@kangaSue You ever try BH4 for gastroparesis. There are some studies that suggest it may be helpful although the price is quite high.

Also was it you that said some nitric oxide promoting medication helped your gastroparesis?

 

[Riley]

What else have you got going on with this (diarrhea, constipation, POTS, abdominal pain etc)? Developing gastroparesis overnight is something that mostly occurs in combination with picking up a viral infection, or in some cases it can be the result of starting a new med recently.

Major CFS relapse last fall, IBS began after that, got it under control with low FODMAP diet, also experienced stomach pain off and on during this time, but it never prevented me from eating and I just thought it was part of IBS.

I used to have very severe POTS, but it has been mostly under control for years.

No new meds. I was diagnosed with NASH in April (even though I have never been overweight) and told to lose ten pounds. I have been losing about a pound a week since then with a modest calorie deficit and Mediterranean diet. I was wondering if this could’ve triggered some sort of starvation response in my ultra sensitive crazy body, but I don’t know if that’s a valid theory.

I noticed some nausea and different flavors of neurological symptoms over the course of last week. I had stomach pain and a couple semi loose stools. Also felt very yuck, flu like, and nauseous to a higher degree than normal for me. By the end of the week I noticed it was harder and harder to eat my usual dinner, but I still managed to without too much trouble. Then on Saturday night after dinner I was so full I thought I was going to die. The feeling carried over into the next day, and I’ve been unable to eat solid food since then. I have mild nausea, but no vomiting.

Since I became unable to eat I have not had as much stomach pain just an unbearable feeling of fullness. I also have had very little IBS symptoms, but I suppose that is because there’s no food to digest.

Bone broth is something of a survival food that can tide you over for a while if tolerated. 800 calories a day though is enough to keep you in survival mode for a long time, I've been doing that for the last 4 years now.

Isn’t bone broth only like 40 to 50 cal per cup?

 

[Howard]

If you haven't already, I would highly suggest seeing a medical professional. An MRI may be necessary.

One possibility:

A bezoar (BE-zor) is a solid mass of indigestible material that accumulates in your digestive tract, sometimes causing a blockage. Bezoars usually form in the stomach, sometimes in the small intestine or, rarely, the large intestine.

If not that, the abruptness of the onset of your symptoms leads me (not a professional) to believe there may be some other type of blockage or obstruction. Problems within the duodenum?

Eh, I'd list out additional possibilities, but that would be nothing more than baseless speculation from my end. Perhaps all of this is being caused by nothing more than severe constipation.. not unheard of

H

 

[Riley]

If you haven't already, I would highly suggest seeing a medical professional. An MRI may be necessary.

My ME/CFS doc thinks it’s gastroparesis from autonomic dysfunction. I plan to establish care with a G.I. doc and get worked up, but I’m trying to triage the situation now. I’ve been having 4-5 bm’s per week regularly up until Sunday when I stopped solid food so I don’t know if that suggests against a blockage of some kind.

ETA: God I hope it’s a bezoar. That would be a much easier diagnosis to swallow. I just read that strawberries, kiwis, and raspberries are risks for them, and I have been eating 2-3 cups of those daily since I started my diet for NASH.

 

[lenora]

Hi Riley....I had GI surgery last year due to a blockage. The build-up of scar tissue from any abdominal surgery is a concern for people who produce a lot of it.....and that includes scar tissue from female operations.

Please check with your physician first, but have you been advised to try Miralax? Do not do it on your own, without advice. This is readily dissolvable, could even be put in your milk and you don't taste anything. Much better than Metamucil, for example. But again, check with your doctor first...that's important. Feel better....Yours, Lenora.

 

[kangaSue]

was it you that said some nitric oxide promoting medication helped your gastroparesis?

Yes it is. Without the med (nicorandil), I get nausea vomiting and a significant increase in epigastric pain from eating. I'm even more convinced now that there is an issue with nitric oxide (NO) production in a significant amount of cases of gastroparesis and this is an agent that in GI function, improves gastric accommodation, pylorus valve relaxation, and allows for increased blood flow to the bowel during the extra demands of the digestion period.

You ever try BH4 for gastroparesis. There are some studies that suggest it may be helpful although the price is quite high.

Yeah, a BH4 deficiency is known to be involved with gastroparesis and I've been wanting to try Kuvan as it can also address the NO deficiency found in gastroparesis as well, but no doctor here is willing to prescribe it for me and I haven't been able to get it at a price that fits my budget (which is bugger all).

Isn’t bone broth only like 40 to 50 cal per cup?

It's not a good long term proposition but you can survive on it for a month if push comes to shove. You can boost it up with protein powder, pureed vegetables if tolerated.

God I hope it’s a bezoar.

Bezoars are actually quite rare in gastroparesis patients despite many articles suggesting they can be an issue for some people.

From what you've said, there's a lot of ways this can pan out as a reason for having gastroparesis. I was particularly after knowing if you had POTS and persistant postprandial abdominal pain and given some other factors you mention, Median Arcuate Ligament Syndrome (MALS) might be a good fit for your symptoms, right down to causing NASH in some cases.

Most typically, MALS causes epigastric pain (can be RUQ or LUQ though) when you eat and for either liquids or solids, but it can start out as just causing some 'abdominal discomfort' around eating, maybe with the occasional transient flare up and can occur over the course of several years before it becomes a severely chronic condition.

That said, it could just as easily be autonomic neuropathy that's causing the GI issues which can be autoimmune or idiopathic related and there can be an association between autonomic dysfunction and at least having NAFLD in some cases.

 

[lenora]

Hi....bone broth, if properly made, is a highly nutritious substance...at least until you can eat something similar

Don't fall for the broth sold in delis and even in grocery aisle, you need good bones to make proper broth and you can put whatever you can tolerate in it. You won't have much, but even finding the bones for it is something you may have to order today. Chicken broth is also nourishing. Both have been used for centuries, so do think about it.

You can probably order beef bones from your butcher....marrow bones are best. Just look at recipes and adjust it as needed. I hope you'll soon feel better and stronger. Yours, Lenora.

 

[Riley]

@kangaSue what do you know about Reglan? My doc wants me to take that, but I have a terrible history with meds, and that seems like a terrifying drug with an FDA black box warning. I’d prefer a risk of sudden death over tardive dyskinesia.

ETA: when I have stomach pain it feels like my stomach is full of broken glass. Not so much RUQ or LUQ.

 

[Howard]

@kangaSue what do you know about Reglan? My doc wants me to take that, but I have a terrible history with meds, and that seems like a terrifying drug with an FDA black box warning. I’d prefer a risk of sudden death over tardive dyskinesia.

Reglan is well tolerated by most people, but not me. The hospital gave me the Reglan days prior to my Jejunostomy surgery, and after ingesting the minimum dosage, I became generally confused and had difficulty speaking. Again, not typical..

Unlike Reglan, Domperidone does not cross the blood-brain barrier and may be the better option. It wasn't available in the United States back then, but perhaps it is now. Or you can order it online from overseas. Of course, ask your doctor.

 

[Riley]

Reglan is well tolerated by most people, but not me. The hospital gave me the Reglan days prior to my Jejunostomy surgery, and after ingesting the minimum dosage, I became generally confused and had difficulty speaking. Again, not typical..

Unlike Reglan, Domperidone does not cross the blood-brain barrier and may be the better option. It wasn't available in the United States back then, but perhaps it is now. Or you can order it online from overseas. Of course, ask your doctor.

Years ago I tried Mestinon for just a few days, and it caused a catastrophic relapse that left me bedridden in the dark for six months. That was the last in a long line of drugs I tried and failed with.

Unfortunately in my present situation, eating is not optional so I don’t know what I’m going to do. I’d prefer to try to erythromycin first, and then domperidone, but it is not readily available in the United States through official channels.

 

[kangaSue]

Reglan is well tolerated by most people, but not me.

what do you know about Reglan?

A lot of people with gastroparesis have issues with Reglan. I didn't have any issue with it but it didn't help for my GI symptoms.

I do best with domperidone but as you say, that's still not easily available in the US yet. I had problems with erythromycin, at about ten weeks into taking it, I started to get a real spaced out feeling all the time along with a feeling of internal tremors. These symptoms quickly resolved on stopping the med.

The herbal preparation Iberogast is worth a try for GI dysmotility. There's a couple of studies floating around to say this can be as effective as domperidone and I know of quite a few people who find it works well for them.

 

[Judee]

I just read that strawberries, kiwis, and raspberries are risks for them, and I have been eating 2-3 cups of those daily since I started my diet for NASH.

Omgoodness...those are just about all my triggers for IBS. If I eat just one blackberry within 5-10 minutes I can feel a flair starting. Anything with tiny seeds or fiber is just like sand paper on my insides or something.

And you've been eating 2.5 cups a day...

My intestines start to swell so much they almost swell shut. I can tell by the resulting size of later bowel movements (I know I really hate giving so much info) but they come out thin like pencils. Plus, a lot of extreme cramping.

My chiropractor gets this with nuts too. He said if he eats just a few cashews he ends up passing out in the bathroom and later has to go to the ER. I've felt faint but never passed out with IBS. I think my sister has though.

Edit: I think you're going to have to do something to get all those seeds out of you. I wonder if they are just embedded in the walls of your intestines now.

Hope you start to feel better soon.

 

[Pyrrhus]

Related discussion:

Gastroparesis - Problem w/Fluid Emptying Only - Need help with rare symptom / diagnosis
https://forums.phoenixrising.me/thr...-need-help-with-rare-symptom-diagnosis.76022/