Badgut RN: Looking for answers to help with gastroparesis   

Posted by mariesgut @mariesgut, May 13 5:25pm

Have gastroparesis 8 months or so now. This is a horrible thing to have. Not really a disease or syndrome but a gut malfunction. The vagel nerve does not allow food to leave the stomach in a timely manner. Feel like food in stomach after 10-12 hours. Not eaten a steak in 4 years. Last time I had a small one felt like it did not digest for 2 days. Found out why last year. Constant bloating sometimes as soon as I eat & sometime mid abdomen rock hard. Taking assortment of antacids daily. Loss of appetite, start to eat & get full quickly, abdominal pain minimal to severe at times. Lots of nausea, reflux when I lay down which causes more nausea. Not sleeping much because of this. Vomiting more in April 5 times + which I was not doing. Dr ordered Protonix, & on it over a year now. Not sure it helps. Diet is supposed to be low fat, low fiber so hardly eating any fruits or veggies. Salads really cause pain so don’t eat them at all. Now severe constipation last 2-3 weeks. Is there no end to this process? Lately barely getting in 1000 calories/day. Last 2 weeks barely 450-800 calories/day. Weight up 10# after loosing 50 the last 2 years.[I was trying to lose weight then.] Read where bod can revert to starvation mode & pack on fat. Holy cow. I am a RN & can’t help myself. Gastro Dr not sure either. Ordered Linzess for constipation Monday but copay $131.00 for 90 pills/90 days lowest dose. Cannot afford that so cancelled med. Was taking senna, Dr told me Miralax 2x/day. Really no other meds for this.Have gen. Zofran for nausea, helps a lot, but sometimes nausea comes on & boom, to bathroom to vomit. Dr states not much help for this syndrome at present. OMG I am miserable everyday after I eat. Worry at night about what to eat the next day. Not what I eat anymore it is when I eat. Everything bothers my gut. Dr want to do another upper scope. Did one last year & found severe redness from acid production. Went in to see him after & told him again I did not feel my gut was emptying. Told him that on the 1st appointment. Finally he ordered the gastric emptying scan after I told him I needed one. Ordered labs Monday & all normal. I am doing a lot of fruit smoothies made a with meal replacement drinks, honey & frozen or fresh fruit. Ordered high protein Ensure this week to get more protein in. Not eating much meat. If anyone knows someone or something that can help with gastroparesis please let me know. I am a desperate RN Used to help others for 42 years, now cannot help myself. Thanks if you read this. I pray for others with this.

Hello @mariesgut. Welcome to Connect. I am so sorry to hear about all of your discomfort with gastroparesis. I have had major tummy issues over the last 10 years or so and it can be frustrating when all of your efforts to make it better feel in vain. We have had a lot of discussions in the past surrounding this diagnosis. It might be helpful for you to read some of the threads.

– Gastroparesis – https://connect.mayoclinic.org/discussion/gastroparesis/
– Gastroparesis Diet – https://connect.mayoclinic.org/discussion/gastroparesis-any-body-have-any-suggestions-about-diet/
– Post Operative Gastroparesis – https://connect.mayoclinic.org/discussion/gastroparesis-5/

I also wanted to invite a few people to the discussion that have been through similar issues you are currently facing. @ken82, @downtowntiger, @ginnyodie, @thull, @pdilly, @quiteachiver75 and @fourof5zs.

Have you found anything that relieves your symptoms at all?

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Just small amounts of food on low residue diet works best for me. I have not had any large amounts of red meat like steak for a long time. I stick to fish, chicken and eggs for protein. If I eat too much, I feel nausea and a lot of pressure in my stomach and it feels like I need to burp and a bunch of food will shoot out and the pressure is relieved and I feel better. Dr gave me medicine for the nausea, but as long as I am careful, I don’t need to take it.

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Hello @mariesgut

I am sorry to hear about your digestive problems! You do not mention if there is a contributing factor to the development of gastroparesis. This can be a problem for diabetics or if you have had previous surgeries of the digestive tract. I have similar problems after three surgeries of the upper digestive tract. Food just does not seem to move through my system the way it did previous to those surgeries.

@thull's suggestions are good, especially about eating small meals. I have also found that chicken, fish, eggs are good sources of protein and don't cause as much bloating as red meat. Ground beef is more easily tolerated than a steak or roast beef.

Have you tried roasted veggies and/or canned fruit? Roasting veggies in the oven with olive oil until they are tender can often be tolerated. If you are missing eating veggies you might give it a try. I usually do a variety of roasted veggies including some grape tomatoes and potatoes along with some green veggies. I will often put them in the microwave for several minutes in order to soften them before putting them in the oven.

For breakfast, I will make a green smoothie. I'll put some spinach, almond milk, bananas, pineapple, etc. in a blender and that gives a great tasting smoothly and allows you to get some fruits and veggies that are pureed.

I understand the frustration of not being able to eat the way you are used to. It does take time and creativity to come up with meals that taste good and provide adequate nutrition.

What other food combinations have you tried?

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Thanks, I have tried everything. I am to a point now where anything makes me sick or have a lot of pain. I am not a diabetic so this is idiopathic. That means they do not know the cause. I had an open chole in 80's, 2 hernia repairs in same place. 2nd hernia repair in 2016 done through belly button. I wonder if he caused a problem with vagel nerve doing it that way. Thanks & keep safe.

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@mariesgut

Thanks, I have tried everything. I am to a point now where anything makes me sick or have a lot of pain. I am not a diabetic so this is idiopathic. That means they do not know the cause. I had an open chole in 80's, 2 hernia repairs in same place. 2nd hernia repair in 2016 done through belly button. I wonder if he caused a problem with vagel nerve doing it that way. Thanks & keep safe.

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It would probably be very difficult to track down the cause of this current problem, @mariesgut. Please remember that it is always your right to get a second opinion. Often a multi-disciplinary health care system, like Mayo or a university medical school, can be great places to go for a second opinion. They have a lot of research going on and different specialists who communicate with each other.

Have you considered a second opinion?

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@mariesgut i hope you look at the other discussions suggested by Amanda in the first response to your post. Lots of good information especially in “gastroparesis diet”

We all deal with gastroparesis differently. Here’s my take: 1. Avoid spendIng a lot of time trying to figure out how you ended up with it. I did that. I still don’t know.
2. Mine was diagnosed when a bezoar was seen in my stomach during a radio frequency ablation of my Barrett’s esophagus. (I used to have an extremely fibrous diet – lots of celery and broccoli and oranges – the list goes on and on!)
3. Speaking of Barrett’s esophagus, is your doc doing a biopsy for that? (you said that your doc found severe redness from acid production – that’s what I had In my esophagus when a biopsy was done and Barrett’s diagnosed over 20 years ago.)
4. Did your stomach emptying study indicate ‘severe’ Gastroparesis? My study indicated ‘moderate’ so I feel very fortunate.
5. After much trial and error, I now eat at least 6 times a day – more like snacks than meals. I eat slowly and chew every thing down to nothing before swallowing.
6. I do not eat FIBROUS foods. (At first I avoided all fiber. But when my doc gave me the go ahead to try adding quick oats and iceberg lettuce to my diet, I started trying more things.)
7. This is my definition of whether or not a food is FIBROUS: If I can chew and chew and it almost turns to liquid in my mouth, it is not FIBROUS and I will eat it. However if I chew and chew and it still there is still texture in my mouth, it is FIBROUS and I do not eat it.
8. I steam the hell out of vegetables so that they melt in my mouth – Brussels sprouts for example. (I love broccoli too but no matter how long I steam it, it remains too fibrous for me to eat.)
9. I take domperidone twice a day. My prescription says to take it 4 times a day but I only take it twice a day. (I call domperidone my illegal drugs from Canada!)
10. I take a probiotic twice a day And a colace twice a day.
11. I rarely have stomach pain, nausea, or bloating. The only time I have reflux is when I forget to take my Prevacid. (In my opinion reflux is caused by GERD, not Gastroparesis.)

Ok. That’s my story. Obviously I am not a medical professional – just someone with Gastroparesis.

Liked by tami2530

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Hello, I too have Gastroparisis, for about 8 yrs, I am also at a loss on what to eat, I do about 4-5 very small meals a day maybe a little apple sauce 1/4 cup, I do eat a lot of Farina baby cereal & add what I am able to digest, i make chicken salad w/shredded meat real well. & I have lots & lots of bone broth , I am also able to tolerate a few crackers soaked on the broth. Aske your Doctor about a Drug Motegrity
It help with the movement of your food & constipation . I’ve been on it about 3 months & it a high improvement, your not alone with this horrible disease. I’m so sorry, Thank you for all the people who you cared for 👍🌹🤗
Are you a Diabetic? I’m one since 1971 T1D

Liked by pdilly, annieoh

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My gastroenterologist specializes in gastroparesis. He was going to prescribe Mestonin which is off label use. But my gastroparesis is not as severe as the first test showed so my biggest problem is ulcers. I can’t control that.

Liked by pdilly

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So ulcers solutions anyone? Carafate & rabeprazole not working.

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@annieoh – just a question- has your doctor tested you for Helicobacter pylori as a cause for your ulcers?

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@astaingegerdm

@annieoh – just a question- has your doctor tested you for Helicobacter pylori as a cause for your ulcers?

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Yes, at endoscopy.

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@amandaburnett

Hello @mariesgut. Welcome to Connect. I am so sorry to hear about all of your discomfort with gastroparesis. I have had major tummy issues over the last 10 years or so and it can be frustrating when all of your efforts to make it better feel in vain. We have had a lot of discussions in the past surrounding this diagnosis. It might be helpful for you to read some of the threads.

– Gastroparesis – https://connect.mayoclinic.org/discussion/gastroparesis/
– Gastroparesis Diet – https://connect.mayoclinic.org/discussion/gastroparesis-any-body-have-any-suggestions-about-diet/
– Post Operative Gastroparesis – https://connect.mayoclinic.org/discussion/gastroparesis-5/

I also wanted to invite a few people to the discussion that have been through similar issues you are currently facing. @ken82, @downtowntiger, @ginnyodie, @thull, @pdilly, @quiteachiver75 and @fourof5zs.

Have you found anything that relieves your symptoms at all?

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I read there’s a new drug, maybe in trials, “donperidone”. A medical school near you might be able to help.

The best advice for anyone with digestion issues: go ASAP to a dietician. I had to ask for this as it’s simply Not on a medical doctor’s radar!! Lots and lots of help from dietician. Medicare doesn’t pay for this diagnosis to see dietician so you may have to pay but worth it. If you have other insurance I don’t know the protocol. But if you have other issues, insurance pays for diabetes nutrition guidance and I believe overweight diet counseling.

I also suffer from this, however, the ulcers are my problem now.

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Amen! A Registered Dietitian is also a great resource if you are allergic to wheat. I initially saw a dermatologist and she told me that the rash I had was not dermatitis herpetiformis(spelling?). It was and is a result of ingesting wheat. An R.D. amd a gastroenterologist confirmed the rash and celiac disease.

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@annieoh hello – I don’t think domperidone is new. I’ve been taking it for a couple of years after it was prescribed by my gastroenterologist for gastroparesis. He explained that I would have to call a mail order pharmacy outside the USA because the FDA would not approve it for use here. I get mine from Canada. It is approved for use worldwide except in the USA. It’s even over the counter in some countries. It helps improve stomach motility.

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@pdilly

@annieoh hello – I don’t think domperidone is new. I’ve been taking it for a couple of years after it was prescribed by my gastroenterologist for gastroparesis. He explained that I would have to call a mail order pharmacy outside the USA because the FDA would not approve it for use here. I get mine from Canada. It is approved for use worldwide except in the USA. It’s even over the counter in some countries. It helps improve stomach motility.

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@pdilly @annieoh ,

I tried domperidone in 2013 and I had several side effects.. I don't remember what they were now and not sure where the paper is I wrote them on. I got the prescription from a doctor at the Mayo in Jacksonville. I had it filled at a local compounding pharmacy. My insurance did not pay for it and I don't remember the cost. Worth checking at local compounding pharmacy for first try.. I got two week's worth. I think I made it a week and a half before I said I'd rather put up with the disease than the medication. It works for many people though.

Liked by pdilly

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