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Tue, Feb 4 10:28am · Gastroparesis with severe symptoms! in Digestive Health

Hi, my name is Tracy and I was diagnosed with gastroparesis about 3 weeks ago after a year of vomiting, stomach pain, countless trips to the ER, 5 hospital stays and 39 lbs lost. I also have long term back pain after an injury and multiple surgeries, fibromyalgia, Sjogren's Syndrome (an autoimmune disease like Lupus only everything is dry, including my digestive tract), osteoarthritis, and a weak immune system that requires IVIG (IV immunoglobulin treatments ) once a month to try to boost my ability to fight infections and such. I started with vomiting binges five or six years ago. They'd happen once a year at first, then twice until this last year, where was sick more than not. I had Zofran, but just the taste of it started making me sick to my stomach, then my potassium would tank and we'd be running back to the ER.

I wasn't able to have the gastric emptying test because I have an internal pain medicine pump which would have caused a positive result regardless, but I've seen the same gastroenterologist each time I've been in the hospital, and he's done or had done every other test, some 2-3 times, and seems that gastroparesis really fits the bill. The last time I was in, the first week in Jan., he gave me Reglan and Phenergan suppositories for when I can't take anything by mouth. He added Prilosec ER in Dec. and Bentyl as needed up to 4 times a day. He would have liked me to take the Reglan all the time, but my family doctor is very afraid of the side affects, and she's really been up on things since I switched to her about 5 years ago – she did everything she could to get me in to a gastroenterologist in an area where you can wait up to 6-8 months for an appointment, so I've been using it as needed and that seems to be working.

Since my last hopsitalization, I've been on the gastroparesis/FODMAP diet, so I've been staying away from gluten, lactose, nuts, fresh fruits and vegetables, anything high fiber except 5 doctor approved prunes minus skins each night so that the opioids don't cause more problems that I don't need. I've been doing pretty well. Since I really wasn't eating anything for the past year, I don't feel deprived at all, and I eat smaller, more frequent meals, like everyone else. I've been able to cut back a bit on my pain meds, which I imagine can't hurt, and will talk to my pain doctor next week about the possibility of turning down the internal pump. I know I won't be able to get rid of it completely, it takes care of an area of my spine that had already been fused when I injured it in a car accident, but I figure every little bit can help.

I'm not usually as positive as I sound today, but so far, I've had a good week. My husband's been very supportive (which wasn't always the case). He made a really good soup with things that I can eat and I feel like I've been at a banquet fit for a king since Sunday, But this is a real change for me after a year of hell. I hope it continues and I hope others have some days like the last few I have.

Sorry for going on so long, Tracy

Tue, Feb 4 10:28am · Gastroparesis with severe symptoms! in Digestive Health

Sorry if that was a repeat intro, but I didn't see my earlier post. Tracy

Tue, Feb 4 10:03am · Gastroparesis in Digestive Health

I'm not a doctor, so please don't take this as advice, ok? But I, too, have pain issues from multiple back surgeries following an injury 26 years ago, as well as fibromyalgia and the autoimmune disease, Sjogren's Syndrome. I was recently diagnosed with Gastroparesis after a year of vomiting and stomach pain, not being able to eat…you know the score.

Anyway, I have an implanted device that delivers dilaudid to a place in my spine that was injured after a car accident AFTER I'd already had a spinal fusion and I take additional pain medicine for breakthrough pain. It makes doing the test for gastroparesis impossible because it would be positive regardless, but after a year of every test under the sun, the doctor feels very confident with his diagnosis and I'm doing really well with the smaller meals and a combination of the gastroparesis/FODMAP diet.

My gastroenterologist has never suggested I go off my pain meds or the other medication I take for my other conditions. While I've been cutting back some on my oral meds and I want to talk to my pain doctor about what I might be able to do to cut back with my pump, my gastroenterologist seems to understand that my pain is a part of me and he's treating me as a whole, not just as a stomach.

Since you have major PTSD as well as pain, is it possible to talk to another doctor who would treat the whole you? Again, I'm not a doctor, I just hate to see anyone have to choose which disease they're going to have treated, That's totally unfair. I understand there's some give and take, but as a fellow pain patient, I can sympathize when someone tells you, that's it, stop your pain meds. Right, and while I'm at it, I'll go back 26 years and undo the injury, it's about as likely. I've definitely been able to cut mine back, but getting rid of them overnight is never going to happen.

I wish you the very best. I know there is a whole lot I can do to help make my disease better and I'm doing all I can every day, but it helps to have a doctor who's working with me and all of my warts. I hope you get the support you deserve for all that you're dealing with.

All my best, Tracy

Mar 7, 2019 · Recipes, Food Tips, Healthy Eating & More in Just Want to Talk

That taco seasoning sounds SO good but my stomach has become so sensitive to spicy things since I've developed gastroparesis. I'd love a really good taco with fresh salsa. Right now, I'd love just about anything that wasn't bland…does anyone have a recipe for great tasting bland food???

Feb 27, 2019 · Recipes, Food Tips, Healthy Eating & More in Just Want to Talk

Thanks to those who liked the top round beef stew recipe. After writing about it last night, I finished the last portion we had in the fridge from Sunday. We still have more in the freezer. I need to eat healthier, too. I don't get online everyday, but I'll be checking in when I do and I also participate in the digestive health group.

Lioness, I like your cabin, I live in Northeastern PA and that could be somewhere not too far from me. Looks very cozy and inviting.
Have a good day,

Feb 26, 2019 · Recipes, Food Tips, Healthy Eating & More in Just Want to Talk

I've never posted here before and am not sure what issues everyone is dealing with. I was recently diagnosed with Gastroparesis so I'm learning a whole new way to eat. I'm not a big meat eater, and what meat I do eat has to be very tender and easy to chew. My husband and I have been able to get small top round roasts, about 2 pounds since it's just the 2 of us now. We brown them and put them in the crock pot til cooked and tender, then add carrots, potatoes and sweet potatoes.The sweet potatoes give it a really nice touch that you don't normally get in a stew-type dish. You can also add celery, onions or any other food and spices you'd like in a stew and that fit in with your particular diet. The meat falls apart by the time it's done so I have no problems making sure it's thoroughly chewed. The whole meal is not much work and we freeze half for another time. I like adding rice the second night.
I look forward to the top round roasts going on sale…it's the first food I've looked forward to in quite a while. (Although I also drive around to find Yoplait Greek Whipped Yogurt and eat it with strawberries and/or blueberries. Not sure about the carbs, but it's non fat and has 90 calories).
Thanks for listening, Tracy

Jan 30, 2019 · Gastroparesis with severe symptoms! in Digestive Health

I was only diagnosed officially 3 weeks ago, but gastroparesis has come up several times during the years that I've had what I call my "puke sessions" where I'd start puking and being really nauseous and nothing would help until I finally ended up in the ER. I take opiod pain meds and have an autoimmune disease called Sjogren's Syndrome, which I'm told it's not uncommon to find with gastroparesis because it makes your body attack your moisture glands so your digestive tract is very, very dry.
I've been following a combination of the gastroparesis diet that can be found on the internet and the FODMAP diet, originally designed for people with IBS, also on the internet that starts you out with gluten free, lactose free and other limitations, and these three weeks are the best I've had in a year. Of course, don't try these without talking to your own doctor, but this is what my doctor recommended for me. I'll be able to start slowly trying one thing at a time to see if I can tolerate more in a few weeks, but I know other than fat free greek yogurt, lactose is out. But I was happy to find there were some things out there that I could actually eat that didn't send me back to the hospital, YET! I take Reglan but only as needed because of the side effects, so only 2-3 times a week, my family doctor was afraid of any more.
I actually have a glimmer of hope for the first time in over a year. But after the year I've had, I'm afraid to feel too positive because it doesn't seem to take much for everything to go wrong. But I guess I'll enjoy it while it lasts.

Jan 29, 2019 · Gastroparesis with severe symptoms! in Digestive Health

Hi Kanaaz, Could you direct me to the existing thread on Gastroparesis as well? My intro post was on Jan. 22.
Thanks, Tracy