Badgut RN: Looking for answers to help with gastroparesis
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.
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I have had mctd 7 years almost from the beginning I go from normal BMs to constipation to diarrhea does anyone else have this?
I was finally diagnosed with gastroparesis in 2014 after so many hospital stays we should have had stocks in one. I was diagnosed with an atonic bowel back in 1980 and had been on so many laxatives that my GI doc tried to get something else. When I w ent to the ER they thought I was drug seeking. The pain with gastroparesis and constipation is 10+ and nausea 10+.I’m on a very strict diet but not much change. I’ve been on both OxyContin & Fentanyl and taken off both since I landed in the ER hallucinating. Then put on Methadone,Zofran( for nausea) and Gabapentine ( nerve pain ).I had a PICC line until 2023 when the site became infected. And now I have stage 3+ kidney disease and EPI ( which means my pancreas doesn’t function properly so now I’m on Creon which does nothing good for my gastroparesis. I was a nurse for 48 years.
If anyone has ANY suggestions or just want to connect I would like it. Even my husband of almost 58 years doesn’t always understand what’s happening !,