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Anyone diagnosed with Gastroparesis?
I have had problems similar to so many GI people. The swallowing problems (food stuck in the throat, bloating, nausea, feeling like choking, "fullness" for hours). Finally after many upper and lower scopes ( have 18 cm colon left and function 80% well when cervical neck is well), a small hiatal hernia, numerous different PPI's for stomach changes, reflux, etc. and now on Nexium, the finding out the main problem 6 years ago was gastroparesis caused by a pain medication. Instead of a pacemaker, I tried a "newly" approved drug for the pyloric muscle of the lower stomach, botox, placed in 3 places to keep the muscle open a little so food could continually be released into the small intestine. The erythromycin in a low dose is a prokinetic, making the nerves contract the stomach muscles but, wasn't working. Still use 4x/day. This way no food collected in the stomach being able to "rot" causing sepsis, and decreased daily nausea and vomiting. I still can only eat small amounts and is more liquid or soft medicine/foods. My appetite isn't the best. I often have reflux, bloating, constipation and hoarseness. But it has been 3 yrs since botox to my stomach and it is working. I take my blessing where I can. I hope this helpe others.
Also, my diet had to change to rapidly digesting foods like white bread and not the "good" eating I was doing like whole wheat or 21 grain bread ( was laying on my stomach for hours), plus many vegetables and also many raw vegetables...a no no.
My daughter is going through so much of this and is an RN. Has Barrett's esophagitis, hiatal hernia, dysplasia, leaky gut syndrome i.e. and awaiting biopsies. Constant n/v, bloating,hoarseness, food in the throat like you in the chat.She is also an RN. On many "new" meds again.
It really can get to you especially when you work and have a very busy life like she does.
My best to all. Hope I could help someone.I understand your frustrations. It is wonderful having an understanding doctor that listens!
Joan
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Hi guys, I'm new to this disussion post, but not to MCC. I had a 9mm precancerous polyp removed from my transverse colon about 2 weeks ago now, and that's also when they determined I've got gastroparesis. The last 2 years have been h311, and only seem to be getting worse, physically. My Dr gave me Motegrity 1mg recently to try, and I ended up getting every side effect in the book, so I quickly discontinued that medication. He wants me to speak to a dietician re: meal planning in a couple months, but in the meantime, I continue to feel awful everyday. 95% of what goes in my body is rejected, and there seems to be no pattern. I'm so unbelievably tired and frustrated, and my fear is that I'll end up where my good friend is, and that's with a permanent feeding tube and not much hope or options ahead. I'm an optimistic kind of girl, but I am also human, and get down sometimes. I don't understand the 'why's' of it all, and that's ok, but I would like to believe there's some relief for me (and so many of you) out there. Does anyone have any suggestions re: any part of this journey, or treatment options etc? Would be greatly appreciated. Thank y'all so much! 🙂
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2 ReactionsWelcome, im very sorry to hear about your struggle and i can relate to you trying to find a path forward i have struggled with gastroparesis for years myself . Ask your gastroenterologist about Domperidone. For me it has help greatly is very safe to use and has been around for years. Also as for your diet try this link.
https://www.livingwellwithgastroparesis.com/aboutShe has you tube videos, books and free diets menus withs a life of experience because she also has Gastropareses herself. Hope fully there is something in there to get you some answers best of luck to you.
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3 ReactionsThank you so much @paulr58 ! I will definitely be asking about that medication and looking into more management options. Today, my Dr said he wants to do a gastric emptying study and go from there. He wants me to use miralax everyday, but I'm not really a fan of that stuff so I'd prefer to avoid it altogether. Idk...just tired of feeling sick everyday. I know it'll get better though. It has to.
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2 Reactions4/7/24
Please check out the medication before you pay for it, many have side affects that just make things worse if you have other issues also. I'm highly sensitive to medications and I constantly struggle with this, because I get the "rare" side effects no gets!
4/7/24
Yeah, you should use Miralax every day, have you read the side effects of this laxative?
An ER doctor told me to use it and I checked it out and decided not to use it because of the side affect and because I'm also highly sensitive to medications. I get the "rare" side effects!!!
I should have said NOT to use it every day. Sorry typo.
4/7/24
I'm starting my journey again, when I was diagnosed with gastroparesis just before I was having gastric bypass surgery and no one ever told me this never goes away. I had to do my own research on it. Plus I had a cervical neck surgery that fused vertebrae and I have pins, screws, plates, and rods in my neck. Plus the surgery was done in Florida, here doctors can only be sued if you find out they did the surgery wrong in the 1st 2 years after the surgery. I think that is why doctors flock to this state. Because by the time you go from one doctor to another, you may have missed the deadline to sue them. Now I have to find a specialist who is a GI doctor and knows what to do with gastroparesis. My current GI does not specialize in this and I also have liver issues not related to alcohol which had to do with the diabetes drugs and painkillers they had me on when I kept having accidents and hurting my back, breaking toes, breaking my tailbone. Then to top it off I'm super sensitive to medication I get the"rare" side effects no one gets. The neck surgery wasn't done correctly because they had to go in from the back of my neck and I have been on a Fentanyl patch since 2019, now I'm at 12mcg, but still have plenty of pain. I don't know how my new pain management doctor will be able to help me, because the last one didn't care about his patients. He basically asks you about your pain level and what you want. God help me, I pray and ask God to keep healing me. I no longer have diabetes, no thyroid problems, and the cirrhosis of the liver is gone, I just have scarring. I want to leave Florida, but moving in our economy sucks right now. Plus I won't move to a blue state, sorry to anyone out there who does, I'm not dissing anyone.
Miralax is not a typical laxative. It works much differently and it’s supposedly a safe medication to take. I took it for years until it stopped working due to a colon issue that had nothing to do with it. Pediatrician’s recommend it for children in lieu of laxatives.
I heard that Florida has a Mayo clinic have you tried to go to the Mayo clinic in your state. You don't want to move where I move cuz marijuana and mushrooms are legal here. And we're overwhelmed by illegals coming in you're trying to get first setting that another city in our state are shutting down the shelters. I used miralax but it did cause cause a lot of bloating and gas.and it didn't help much. The gastrocreases you eat small meals and you don't eat any raw vegetables you cook your vegetables and you with your fruit you only eat fruit like bananas and melons watermelon.. symptoms over the counter cold call I Board it's all natural and it may help with your symptoms and there's other stuff that helps with that too you can buy it at your local but drugstore or grocery or Walmart.