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Gastroparesis or slow modility colon

Posted by teresabarton @teresabarton, May 19, 2023

I was diagnosed with gastroparesis with one doctor and he sent me to a bigger university for a pacemaker.
The next university said it was not gastroparesis. This doctor had me do a Sitz Marker Test and after 7 days, I still had 58 markers left in my upper colon. He diagnosed me with a slow modility colon.
For the past 9 months I have (and getting worse) severe abdomen bloating, cramps, pain, nausea, and now lower back pain. I have been on a gastroparesis diet for 6 months with no relief. I only eat frozen yogurt and cracker for lunch. I wait to eat a more bland diet when I get home from work, knowing the bloating and nausea will get worse.
I now can only wear dresses, no pants, due to the extreme bloating and then discomfort of anything tight around my abdomen. Now I have gained 5 pounds in the last week with the same diet I have been on for 9 months.
My doctor now has me on miralax and apple juice. (During the last 6 months I have been with him, I have developed constipation in the past 3 months. Something I have never had in my 60 years of age.) I can't drink apple juice or anything except water due to the fact it also makes me nauseas.
I have tried Reglan, which made me suicidal, and erythromycin, which did not help.
Anyone have these same symptoms or and suggestions of what to do next. The doctor said I may just have to live like this. I am a very upbeat, positive person, but I can't imagine there is not something wrong to start the symptoms just in the last 9 months. I will take any help! Thank you so much.

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pichulita | @pichulita | Apr 19 8:02am
In reply to @jerce "I am a bit reluctant to mention the otc product suggested by a GI. I do..." + (show)
Profile picture for jerce @jerce

I am a bit reluctant to mention the otc product suggested by a GI.
I do have scleroderma related gastroparesis. I had been doing the diet, etc. However, I was still getting the painful symptoms AND finding no relief until I involuntarily vomitted.
That meant that I would lose the calories I had ingested and would lose more and more weight, becoming malnourished. Did you know that one of the symptoms of being malnourished is: LOSS OF APPETITE.

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@jerce I also have chronic gastritis (not h-pylori) and take 1,000 mg mastic gum at lunch and again at dinner. I also take digestive enzymes but my stomach is still swollen and sometimes I have to force myself to eat. i take 1 ginger pill at breakfast to help with the lazy stonach. What is the OTC supplement that helped you?

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jerce | @jerce | Apr 19 8:46am
In reply to @pichulita "@jerce I also have chronic gastritis (not h-pylori) and take 1,000 mg mastic gum at lunch..." + (show)
Profile picture for pichulita @pichulita

@jerce I also have chronic gastritis (not h-pylori) and take 1,000 mg mastic gum at lunch and again at dinner. I also take digestive enzymes but my stomach is still swollen and sometimes I have to force myself to eat. i take 1 ginger pill at breakfast to help with the lazy stonach. What is the OTC supplement that helped you?

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@pichulita The gastroenterologist suggested the use of IBgard. As promised, it is expensive.

I have a diagnosis of scleroderma related gastroparesis and try to follow a related diet that I found on google.

I sometimes have the same abdominal discomfort but no further involuntary vomiting, loss of calories and weight.

I do hope that you will discuss your symptoms with a gastroenterologist before trying any OTC.

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teresabarton | @teresabarton | Apr 19 9:43am
In reply to @bkatz43 "@teresabarton I am very interested in hearing more about this and your experience! Thank you, Beth" + (show)
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@teresabarton

I am very interested in hearing more about this and your experience!

Thank you,
Beth

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@bkatz43 I had an emergency appendectomy surgery, which really threw my gastroparesis into a tailspin. I had dropped 20 pounds in two weeks. I was going to get IV fluids to even help me keep going. It had been a progressive downfall in the two years prior and I was desperate and went to Mayo, Vanderbilt and IU. They could diagnose it, but not much help except diet. I found out about Vanguard surgical, Dr. Hughes, in Louisville, Kentucky, who actually does surgery for gastroparesis. His first surgery is always the plyoroplasty surgery if you have been dealing with this for years. . I will have to say even after the surgery, it took about six weeks before I started to feel better. But since then, it has been life-changing! There are very few surgeons who actually do the surgery. You got through a whole screening process to see if it would help. It definitely helped me, and I pray that is something that maybe would help you too.

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bkatz43 | @bkatz43 | Apr 19 10:52am
In reply to @teresabarton "@bkatz43 I had an emergency appendectomy surgery, which really threw my gastroparesis into a tailspin. I..." + (show)
Profile picture for teresabarton @teresabarton

@bkatz43 I had an emergency appendectomy surgery, which really threw my gastroparesis into a tailspin. I had dropped 20 pounds in two weeks. I was going to get IV fluids to even help me keep going. It had been a progressive downfall in the two years prior and I was desperate and went to Mayo, Vanderbilt and IU. They could diagnose it, but not much help except diet. I found out about Vanguard surgical, Dr. Hughes, in Louisville, Kentucky, who actually does surgery for gastroparesis. His first surgery is always the plyoroplasty surgery if you have been dealing with this for years. . I will have to say even after the surgery, it took about six weeks before I started to feel better. But since then, it has been life-changing! There are very few surgeons who actually do the surgery. You got through a whole screening process to see if it would help. It definitely helped me, and I pray that is something that maybe would help you too.

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@teresabarton

Thank you for your reply.
Best of luck to you!

Beth

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carolinlv | @carolinlv | Apr 19 1:42pm
In reply to @annpeters "@carolinlv. Thank You so much for posting something that looks so promising. Can you please help..." + (show)
Profile picture for annpeters @annpeters

@carolinlv. Thank You so much for posting something that looks so promising. Can you please help me out though? When I went on Amazon to Google it there were several products with that name. Can you be more specific? I’ve tried so many things …..I’m desperate so I will try another thing but it would be so helpful to know exactly what has helped you so much. Thank you so much. Wishing you continued good health.

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@annpeters here is a pic of the product. The brand is Metagenics and the specific product made by that brand is Glutagenics. It contains L glutamine, DGL, and aloe vera. You can buy L glutamine from several supplement companies, but the doctor said the DGL and aloe vera in this specific product make it a far superior to L glutamine. Good luck! Hope this helps!
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pichulita | @pichulita | Apr 20 3:15am

Thanks so much for the info….will definitely discuss with my GI

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