Nancy K

Motility & Liquid Diet

6 posts in this topic

Hi all! Again, thanks so much for all your input re: Negative ANA testing! I fell well armed for my next venture into the land of rheumatology and I will definitely be finding another that treats the symptoms, not the labs! On that note, I am going to Shand's at UF tomorrow to see my GI doctor, and could use some input from those of you in the know...

 

I've gone thru and read all the threads re: motility problems and diets, but I haven't seen anything about liquid diets. I have been on a liquid diet since August, due to a lack of motility in the GI tract (some esophogeal, mostly stomach & intestines) I continue to suffer from SIBO (small intestinal bacterial overgrowth), which is treated with an antibiotic, but it never really goes away. I'm 5' 7 and weigh 116 lbs- my normal weight is 138- and I've been on steriods for 22 years, so I've never been skinny until this last year.

 

The GI doctor's solution was to have me eat only liquids, which means blending everything, or eating yogurt, fruit cups, soup broth, pudding, baby food, mushy vegetables, and nothing that's hard to digest like brocolli or fiber. I'm finding that I am still full all the time, still have really bad reflux & heartburn (on nexium 2 q day) and I haven't had a bowel movement in 5 days. All & all, I'd say I'm getting worse, but the last time I went to Shands, they didn't change, or suggest anything different, and they are afraid to do anything invasive because of the Scleroderma.

 

So, I am looking for ammunition to take with me tomorrow. I know most all of you suffer with aspects of this, so you are the experts! Anyone been on a liquid diet that works? And what meds are you taking for the motility problems? Reglan & Zelnorm don't work for me- I've tried them! The only thing I take for this now is Amitiza. Anyone on something different that actually works? Oh yeah, and I use suppositories at least every other day for the nausea!

 

Thanks again in advance for all your help!

 

Nancy K in Florida

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Hi Nancy, I had the same problem and occasionally it returns. My doctor put me on Reglan, Protonix and Flagyl (antibiotic). The antibiotic was the solution. We tried several until we found that flagyl works. So when I start to develop symptoms I start the antibiotic again before it gets out of control. It works wonderfully.I haven't had these problems in almost a year. I used to deal with this continuously. My rheumatologist prescribed this approach. The GI doctor wanted to put me on a liquid diet, a feeding tube and diagnosed me with IBS. He was frustrating, but life is good now. Good luck. ltulip

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Thanks! I've tried Reglan, Propulsid, Zelnorm & Amitiza, and none have worked. I've tried Flagyl, Keflex & Augmentin & they haven't worked. So, what's next?

Nancy K

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Hi Nancy,

 

So sorry you are having this much trouble. I have motility and bacterial overgrowth(under control now) problems , awful in the beginning and was down to liquids a few times. I have been prescribed Motilium up to 4 a day and this has helped soooo much. My GI guy prescribed it. I have been on it over two years now and I can't say enough. I take acidopholous for bacterial overgrowth and when bad take doxicycline.

By the way, I was not ANA postitive for three years after I got this mixed connective tissue disease. Then it all showed up and Antibodies also so don't get too discouraged. Susie54

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Hi Nancy,

 

I know several members on here have used and talk very positively about motilium. Nonetheless, I wanted to share some information about the risks of Motilium from our page on the sclero A to Z website on gastro involvement. This is what it says:

 

Domperidone Warning FDA Alert: Detention without Physical Examination of Domperidone, brands names Motilium, Euciton, Cilroton, Praxis, Seronex, Emiken. Domperidone is not approved for any use in the U.S. There have been several published reports and case studies of cardiac arrhythmias, cardiac arrest and sudden death in patients receiving an intravenous form of domperidone. U.S. Food and Drug Administration (FDA). Domperidone Should Not Be Considered a No-Risk Alternative to Cisapride in the Treatment of Gastrointestinal Motility Disorders. Several cases of QT prolongation and ventricular tachyarrhythmia have been reported with domperidone, a gastrokinetic and antiemetic agent available worldwide but still under investigation in the United States. American Heart Association. Circulation 2000:102:1883.

Hope you find this helpful.

 

Warm wishes,

Heidi

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Thanks again all! I will definitely be armed for my appointment tomorrow! I'll let you know what happens!

 

Hugs,

Nancy K

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