Badgut RN: Looking for answers to help with gastroparesis   

Posted by mariesgut @mariesgut, May 13, 2020

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.

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.

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@fourof5zs Hello Zaroga – hope you are doing ok! I remember you posting about your experience with domperidone in another conversation on this site. I am so sorry it did not work for you. It has worked so well for me with no side effects whatsoever. That’s what’s so crazy about drugs. They can affect anyone in anyway at any time.
(I was always so surprised that a compounding pharmacy made domperidone for you since it’s not approved for use in the United States. I did not realize they could do that.)

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I can relate with you completely. I have the same condition and same exact symptoms/issues. I suffered for 10+ years with no Doctors having an answer that would help. The only treatment that would give me some relief was to take lactulose almost daily and once a month I had to clean out with the same prep you do before a Colonoscopy. I was so fed up and depressed because of being miserable and looking like I was pregnant all the time,(even had been asked when my baby was due, several times. I’m 58 years old)!!!
I made several trips to the ER and spent many nights in the hospital. I swear that I had every test in the world done!!
Then strangely, after having an MRI of brain for migraines they saw a tumor on my pituitary gland. After seeing many specialists I was sent to a Endro Dr he diagnosed me with Secondary Addison’s Disease.
He put me on Hydrocortisone 5mg.
tablets. I take 15mg in am and 15mg in pm.
Oddly enough, my bowels started working and my stomach is no longer hard and bloated !!! I’ve been on the Hydrocortisone for 15 months now and I do not look pregnant and have no discomfort and regular bowel movements!!!
My Dr doesn’t really have an answer to why this happened. But I feel that because Hydrocortisone is a Steroid which speeds up your metabolism it must be speeding up my digestive track and making everything work right again!!??
Sounds strange but that’s all I can come up with and maybe you being a nurse you might have some connections to investigate this possibility and might be able to get some relief by trying the Hydrocortisone. Probably only needing a small dose.
Just thought that I would share my incredible story in hopes that there is some off label use here that could give you and others relief from this horrible condition. I’m not a Dr. and am only explaining my personal experience. Good luck and please keep me posted.
Sincerely,
Michelle

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I was diagnosed with gastroparesis in 2016. May vagus nerves were inadvertently cut/damaged during a surgery. You are correct in that gastroparesis is miserable! I had a pyloromyotomy in August 2016 which helps my stomach empty. Trying to take in enough calories every day is a battle, and an uphill one at that . I am losing the battle currently. I am 6'2" and weigh 137. I have a CT scan tomorrow as Dr.'s are grasping at straws to determine why I am getting stomach cramping and diarrhea almost every time I eat, regardless of what it is. I am well-versed in the gastroparesis diet and don't stray from it. I have had a lot of ups and downs over the past four years….picc lines for parenteral nutrition (and several episodes of sepsis), j-tube for nutrition (did ok for a while and then started vomiting the j-tube liquid followed by bile and pancreatic acid and developed granular scar tissue which was painful and the tube was prone to pushing itself out….none of the prescriptions helped…from what I can gather people seem to respond differently to this disorder. I hope you find some relief.

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Hi @rossjt and welcome to Connect. I can relate to some of your struggles on a personal level. I have had several abdominal surgeries resulting in a G-tube placement that later caused sepsis and peritonitis. I am 6'0 and got down to 120 lbs at one point. It is an uphill battle for sure! This was a good discussion that you picked to share your story as there are several people that are having similar issues. @tazz61, @pdilly, @mariesgut are just a few.

I have added an article below that you might be interested in reading.
http://www.digestivedistress.com/sites/default/files/pdf/Chronic%20Diarrhea.pdf
Has your doctor considered Dumping Syndrome at all? Also, are you currently on any medications? Sometimes with gastrointestinal issues, medicine can weigh heavy on how our body reacts to it.

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Is anyone out there living well that has been diagnosed with gastroparesis? My vagus nerves were cut during a surgery which caused my gastroparesis. I have lost 100 pounds and have tried prescriptions, a j-tube, a picc line and the gastroparesis diet. I am 6'2" and currently weigh 132 pounds. This is not working. I now get diarrhea almost every time I eat, even though all I eat are gastroparesis diet approved foods. I was doing ok until about 6 months ago. If anyone is having a quality life, I would like to know how you are doing it?

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Hi @rossjt You'll notice that I moved your message to this discussion where other members are already talking about gastroparesis and where you and I were previously talking. You can click VIEW & REPLY to scroll through the past posts. The huge benefit to grouping closely related topics, is that you can easily identify members that have similar issues or health conditions and tag them with the @ sign to ask for their opinions and experiences.

@ken82, @downtowntiger, @ginnyodie, @thull, @pdilly, @quiteachiver75 and @fourof5zs are a few people in the digestive health group that might relate to what you are experiencing.

Does your physician currently have you on any medication? Do you remember if there was any significant change in your life when this started 6 months ago that could account for the sudden onset of symptoms?

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@rossjt I have a quality life despite having gastroparesis. If you’ll scroll back towards the beginning Of this discussion, I had one rather long post where I listed 11 things I do. If you get time to read it and have questions about anything I do, please let me know.

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@dsstevens

Just signed up for this Mayo Clinic, hoping to find some answers &/or some ideas as to help with Gastroparesis.

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i'd like to find out more too what do you have…any diet ideas

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Just signed up for this Mayo Clinic, hoping to find some answers &/or some ideas as to help with Gastroparesis.

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