Having motility issues, may be gastroparesis: Any thoughts?

Posted by eileenb1022 @eileenb1022, Feb 19, 2022

hello, i really need some feedback. i have been sick for about 7-8 months and although i had my gallbladder out four weeks ago i am still sick. presurgery two different surgeons said i had more going on than just my gallbladder. i am going to see a motility doctor here in NH but im scared he willbe like most doctors and not take me seriously. i lose about a pound every day. this morning i woke up in such pain. i can barely eat which explains the one pound loss a day. i did have a stomach emptying. several months ago. this nurse practioner ordered it. the same nurse practioner who said there was nothing wrong with my gallbladder. anyway i think the test is invalid. first i never knew you were suppose to have eggs and toast. all i had was half a tuna sandwich. i saw and they told me it was normal and i just didnt empty on hour two of a four hour test. this GI wanted to put me on a antidepressent. i said no. only good thing he did was refer me to a motility doctor. i woke up in pain this morning and i dont know what to do or think. please help me.

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@mothermary1

Well you need to be your own advocate these days. I’ve said it here a year ago that I approach my doctors with the attitude they get paid by you, so essentially they work for you. Suggest it and if the doctor rejects your desire to have the test, ask why. I’m sure with what you’ve been saying here you have the right diagnostic codes for your insurance company to cover it. It seems to be standard for your situation as the sitz marker study was for me. I’m retired so I have Medicare and a very good supplement. My doctor’s don’t always agree with my suggestions so when I’m going and want a specific test I get on my computer, print the most important info that states why this test can help in diagnosing and I bring it. I’m well informed and I want my doctors to know I am. I get they are smarter than I but it doesn’t mean that I know my body best and I can list off the top of my head every drug for constipation they have tried. Miralax to me is way over prescribed especially kids and just about every colonoscopy says take the largest bottle to prepare. It has a substance called PEG 3350. It’s an osmotic laxative. Just pushes water into the colon. I get very sick from it. Their are lawsuits pending from parents about long term effects on children. I can’t understand how a 27 ounce bottle mixed in gadorade for colon prep is good for anyone. It makes no sense. We’ll be safe and think positive, not easy. Remember, your in NH so you are close to Boston Hospitals, some of the best in the world. You can always go there.
Joanne

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Hi Joanne thanks and I know. It's just hard. I know they work for us. Which is what's frustrating. I will see what he says next Monday. I know nor that far from Boston it would be great is if someone could recommend someone real good that I would be sure that would take me seriously. Also I stopped the Reglan due to side effects

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Eileen you could try Lahey next. They are part of Beth Israel. I’m seeing Dr. Hanley Williams in March second visit. I left Brigham and womens Gastro because they say remove entire colon so I’m out in search of someone that might disagree. My first visit went great. She a motility special well. She was up front saying I’m not sure I’ll find anything different but we shall see. That was three months ago. I wanted three more months of colonics, visceral massage, pelvic floor pt and following with a naturopathic doctor. The answer is still no. I can’t pass stool ever. If I stop laxatives nothing so I have to take them. I have no idea what she can offer but I have some ideas of my own. Keep searching..Joanne

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@mothermary1

Eileen you could try Lahey next. They are part of Beth Israel. I’m seeing Dr. Hanley Williams in March second visit. I left Brigham and womens Gastro because they say remove entire colon so I’m out in search of someone that might disagree. My first visit went great. She a motility special well. She was up front saying I’m not sure I’ll find anything different but we shall see. That was three months ago. I wanted three more months of colonics, visceral massage, pelvic floor pt and following with a naturopathic doctor. The answer is still no. I can’t pass stool ever. If I stop laxatives nothing so I have to take them. I have no idea what she can offer but I have some ideas of my own. Keep searching..Joanne

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Hi Joanne thanks what Lahey clinic do you go to? Is it in Boston? I just messaged my pcp about the Reglan
I also had to fill out a questionnaire for Dartmouth. I went to harts restaurant last night. Could barely eat. And I was so dizzy. Hoping for the best 👌

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I go to Lahey Burlington Mall rd. I worked there for 10 years, long time ago. I go to rheumatology department there. I also have GYN there. They suggested Dr. Hanley Williams in Gastro. My pcp is in Chelmsford Ma. I’d like a new one but 67 in two weeks and starting over not easy. I go to anyplace I want. I’m fortunate with my insurance, no referrals. I do so much research before I pick a specialist. What works for one person doesn’t always work for someone else. It’s hard to find the right person. I’m not giving up. Someone will figure out my colon. Joanne

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@mothermary1

I go to Lahey Burlington Mall rd. I worked there for 10 years, long time ago. I go to rheumatology department there. I also have GYN there. They suggested Dr. Hanley Williams in Gastro. My pcp is in Chelmsford Ma. I’d like a new one but 67 in two weeks and starting over not easy. I go to anyplace I want. I’m fortunate with my insurance, no referrals. I do so much research before I pick a specialist. What works for one person doesn’t always work for someone else. It’s hard to find the right person. I’m not giving up. Someone will figure out my colon. Joanne

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Hi JoAnne, i am guessing that that lahey sounds like burlington? as i said i stopped taking reglan due to my face feeling paralazed. i messaged my pcp who is right here in whitefield he told me to take 1/2 the reglan but not at bedtime. i said i threw them out. he said to take zofran but i never had that to begin with. my last message to him was yesterday ar 2. no response after that. i had to fill out a questionaire for dartmouth. i just called them to add some things do the dartmouth dr could see. see the reglan did help and my pcp wanted to try that because he believed i did have gastroparisis and yes i must have because the regland worked no without it i really cant eat most foods. yesterday we went out for breakfast. all i had was scrambled eggs and a biscuit and i was bloated and in pain for the rest of the day. unfortuently my insurance requires a referral. it would be nice if it didnt. and i am 54. never been sick in my life and have no idea why this all happened. if you want to talk privately id love to talk to you my email is eileenbrown1022@gmail.com. have a good day. Eileen

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In reply to @mothermary1 "I emailed you" + (show)
@mothermary1

I emailed you

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got it, i think its easier that way. i so appreciate your insight.

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@eileenb1022

got it, i think its easier that way. i so appreciate your insight.

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@Joanne, @eileen, hi ladies. I also have gastroparesis but not as bad as the two of you. Please forgive me for butting in. I also have taken Reglan, didnt do a thing for me, also Zofran, nada. I have had IBS-C since I was 20 and married my first husband. I'm 70 now. Have been depressed off and on for many years and tried many antidepressants. My psychiatrist is trying me out on some antipsychotics bc I see things. Trouble is these meds cause constipation. If it has that side effect I will have it. The first 2 I threw away. Eileen, I thought I was the only one that researched my conditions but you have beaten me hands down. I'm so impressed. I think maybe my pcp has forgotten I have gastroparesis. I have a really bad case of all over body itching and that's what I mostly am looking up. Ladies please 🙏 take care of yourself anf God bless. Dannybee

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@dannybee

@Joanne, @eileen, hi ladies. I also have gastroparesis but not as bad as the two of you. Please forgive me for butting in. I also have taken Reglan, didnt do a thing for me, also Zofran, nada. I have had IBS-C since I was 20 and married my first husband. I'm 70 now. Have been depressed off and on for many years and tried many antidepressants. My psychiatrist is trying me out on some antipsychotics bc I see things. Trouble is these meds cause constipation. If it has that side effect I will have it. The first 2 I threw away. Eileen, I thought I was the only one that researched my conditions but you have beaten me hands down. I'm so impressed. I think maybe my pcp has forgotten I have gastroparesis. I have a really bad case of all over body itching and that's what I mostly am looking up. Ladies please 🙏 take care of yourself anf God bless. Dannybee

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Hi Dannybee,
thanks for writing. i havent even been "officially" diagnosed with gastroparisis but i know i have it. thank you i have done my research and so has my husband. my pcp is the only one so far who said i had it based on my symptoms. so he prescribed reglan it did work but by day 5 i felt like my face was paralazed. almost like i had a stoke. it freaked me out so i got rid of the reglan. well i was right back where i started so yesterday i went back to reglan but only 1/2 the dose. i was able to eat my pcp just said dont take at bedtime to possibly cut down of chances of side effects. well this morning i work up in some real pain. my husband suggested i get up because he didnt think it was good to be laying down if i was in pain. i also had real loose stools(sorry if tmi) i see my pcp again today and the motility doctor virtually on monday. i am hoping so much he believes me and will help me. god bless. Eileen

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@eileenb1022

Hi Dannybee,
thanks for writing. i havent even been "officially" diagnosed with gastroparisis but i know i have it. thank you i have done my research and so has my husband. my pcp is the only one so far who said i had it based on my symptoms. so he prescribed reglan it did work but by day 5 i felt like my face was paralazed. almost like i had a stoke. it freaked me out so i got rid of the reglan. well i was right back where i started so yesterday i went back to reglan but only 1/2 the dose. i was able to eat my pcp just said dont take at bedtime to possibly cut down of chances of side effects. well this morning i work up in some real pain. my husband suggested i get up because he didnt think it was good to be laying down if i was in pain. i also had real loose stools(sorry if tmi) i see my pcp again today and the motility doctor virtually on monday. i am hoping so much he believes me and will help me. god bless. Eileen

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Good luck @eileen. I have had some real doozie doctors in the last 15 years. It's like they engage their mouths before they engage their brain. I was at an appointment one time and was explaining how my feet were feeling, "like they had ace bandages wrapped around them real tight, and were swollen". Then pearls of wisdom spewed forth, " well, they're not swollen now...." She was bending over my feet down on the floor. I had some very tempting thoughts right at that moment. Maybe, if you keep leading your doctors in the right direction they will figure things out. Here's hoping, Dannybee

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