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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Hi @eileenb1022, you sound like you're at the end of your rope. I know there are others here who can relate, like @lily21 @brendaharvey @mgeller604 @ken82 @brandywine8875 @1950 @snapdragon20 @donnacarp @mothermary1 who have shared in these related discussions:
- Gastroparesis: https://connect.mayoclinic.org/discussion/gastroparesis-9/
- Gastroparesis Diet – Questions, Suggestions, Tips: https://connect.mayoclinic.org/discussion/gastroparesis-any-body-have-any-suggestions-about-diet/

Like you, Eileen, I'm encouraged that you have a referral to a motility specialist. What questions are you preparing to ask the doctor?

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The only good thing the Motility Clinic did for me was sending me to Physical Therapy and consult with a surgeon. Haven’t heard from them since!

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@colleenyoung

Hi @eileenb1022, you sound like you're at the end of your rope. I know there are others here who can relate, like @lily21 @brendaharvey @mgeller604 @ken82 @brandywine8875 @1950 @snapdragon20 @donnacarp @mothermary1 who have shared in these related discussions:
- Gastroparesis: https://connect.mayoclinic.org/discussion/gastroparesis-9/
- Gastroparesis Diet – Questions, Suggestions, Tips: https://connect.mayoclinic.org/discussion/gastroparesis-any-body-have-any-suggestions-about-diet/

Like you, Eileen, I'm encouraged that you have a referral to a motility specialist. What questions are you preparing to ask the doctor?

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None because he won't believe me anyway
My husband is making me go to my pcp tomorrow morning and I can't take another blowout but that's exactly what I'm going to get

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i'm really sorry for how i sounded last night. i was in such a bad state from noone listening to me or believing me. i didnt even want to go to my pcp this morning but so glad i did. i had been seeing someone else so i hadnt seen him in several years. but he was always great. he really listened to me everything i went through. he said he could tell i lost weight and he thought i did have gastroparisis. thank god. he put me on reglan and wants me to try to eat and come back in 2 weeks to see if the reglan helped if it did he said he would call the motility dr im suppose to see although he said they dont usually like to hear from them(regular doctors) i was able to eat. i do have stomach cramps but that happens after i eat due to not having a gallbladder but yes so happy someone believed me. at this point im not even worried about the motility doctor!

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@eileenb1022

i'm really sorry for how i sounded last night. i was in such a bad state from noone listening to me or believing me. i didnt even want to go to my pcp this morning but so glad i did. i had been seeing someone else so i hadnt seen him in several years. but he was always great. he really listened to me everything i went through. he said he could tell i lost weight and he thought i did have gastroparisis. thank god. he put me on reglan and wants me to try to eat and come back in 2 weeks to see if the reglan helped if it did he said he would call the motility dr im suppose to see although he said they dont usually like to hear from them(regular doctors) i was able to eat. i do have stomach cramps but that happens after i eat due to not having a gallbladder but yes so happy someone believed me. at this point im not even worried about the motility doctor!

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I have a motility appointment tomorrow. On top of noone listening I have had to wait weeks to be seen

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@camber502

I have a motility appointment tomorrow. On top of noone listening I have had to wait weeks to be seen

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I wish you good luck
I don't see mine until April 18. But since my pcp said I had gastroparisis and on Reglan, still struggling with what to eat.

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my appointment with the motility doctor has been moved up to march 7. im excited but nervous he wont believe me even though my primary did and put me on reglan. its working where i can eat. before that i couldnt eat and the scale just kept dropping. my pcp said to tell him the reglan is working. hope your appt went well.

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@eileenb1022

I wish you good luck
I don't see mine until April 18. But since my pcp said I had gastroparisis and on Reglan, still struggling with what to eat.

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@eileenb1022
Please watch for side effects of the Reglan. My gastro doctor wanted me to take it years ago and my family care doctor said no! After a couple of more years my gastro doctor said he was having a lot of patients have severe non-reversible side effects from Reglan and was being more careful as to who he prescribed it for. I have neuralgia.. nerve problems which could make me more likely to have the side effects. At first sign of any side effects you should stop the drug. I just survived on no drugs for it for years (watch my diet) until I had more digestive issues come up. .. I wound up having a gastric bypass to take care of a giant hiatal hernia that kept pulling up into my chest and bringing my stomach with it. I had so many complications .. rebuilt digestive tract … along the journey and the gastroparesis is no longer much of a problem.. just sometimes. More problems getting food to go into my stomach than out because of esophageal problems.

With the gallbladder removal you need to watch your diet… and ease back into eating … many diet guides for it and gastoparesis on the internet.. . low fat, low sweet, easily digestible foods .. eat probiotic foods like yogurt or kefir or do as I do and take a probiotic supplement (I use Align, but you may have success with a cheaper one.. i did not.. I spent a lot of money on trial and error on which one worked best for me) .

If your read through some of the linked conversations that Colleen mentioned you may find more help.

ZeeGee

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@fourof5zs

@eileenb1022
Please watch for side effects of the Reglan. My gastro doctor wanted me to take it years ago and my family care doctor said no! After a couple of more years my gastro doctor said he was having a lot of patients have severe non-reversible side effects from Reglan and was being more careful as to who he prescribed it for. I have neuralgia.. nerve problems which could make me more likely to have the side effects. At first sign of any side effects you should stop the drug. I just survived on no drugs for it for years (watch my diet) until I had more digestive issues come up. .. I wound up having a gastric bypass to take care of a giant hiatal hernia that kept pulling up into my chest and bringing my stomach with it. I had so many complications .. rebuilt digestive tract … along the journey and the gastroparesis is no longer much of a problem.. just sometimes. More problems getting food to go into my stomach than out because of esophageal problems.

With the gallbladder removal you need to watch your diet… and ease back into eating … many diet guides for it and gastoparesis on the internet.. . low fat, low sweet, easily digestible foods .. eat probiotic foods like yogurt or kefir or do as I do and take a probiotic supplement (I use Align, but you may have success with a cheaper one.. i did not.. I spent a lot of money on trial and error on which one worked best for me) .

If your read through some of the linked conversations that Colleen mentioned you may find more help.

ZeeGee

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thank you. i started monday and have had no side effects as of yet. once in a while i get hot but not too often. it is working i am able to eat before i couldnt it hurt too much. my pcp is the one who prescribed it and believes i have gastroparisis. i have a appt with the motility dr on march 7. no idea what he is going to say. my stomach emptying i believe was done wrong i had half a tuna sandwich and from everyone i talked to and read your suppose to have eggs and toast. i got gutsy and just called radiology. all she would do is argue with me stating their "ptotocal." i think they are wrong.

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Hi, I also live in NH, Hudson. I’ve been through the ringer since June 2020 after ACDF 3 fusion surgery at Beth Israel. I started at Granite State Gastro and got absolutely no place after months. I even was sent to a doctor in Boston in error because PA misread results. I’m very forgiving. I retired from medical and everyone make mistakes. I ended up in March 2021 at Gastro in Brighams. After surgery my bowels completely shut down and I mean completely. Granite state did colonoscopy, sixth marker study which I failed completely and had a polyp removed during colonoscopy. Then I had mr defography. They tried one med after the other from prescription to OTC. I did decide to go to the Gastro dept at Brighams. Thinking bigger hospital and better than NH. I started with analrectal manometry, SIBO test, NM Gastro emptying and then Fl UGI series with small bowel. This entire time I was still taking massive doses of laxa and prescription drugs. I started pelvic floor PT as well because I had poor push in rectum. I’ve done that six months. I have no gallbladder, 15 years. I’m hypothyroid, taking meds. In the end September 2021 I was scheduled for total colectomy. I couldn’t do it so I canceled. I was and still am terrified it will just cause another issue. I decided to go natural, weekly colonics, mago7 supplements nightly, visceral massage and a naturopathic doctor. I’m off foods that I’m sensitive to also no sugar or dairy. I was great for few months but having trouble again. Diagnosis, severe colon motility, push issues, posterior peritoneocele. They say remove colon and I won’t be constipated or live this life. I’m living this life. Seeing a motility doctor now at Lahey for another opinion to see if she has her own thoughts. I have no reason why this just stopped. Keep in touch.. joanne

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