Gastroparesis? Are you on.....

[Francelle]

......one of the prokinetic medications like Domperidone, Reglan or Erythromycin? Also are you under a Gastroenterologist who monitors you? If so, what sort of things does your Gastroenterologist monitor you for?

How severe is your Gastroparesis in terms of what you can NOT eat despite being on prokinetics or do you have a gastric pacemaker, jejeunostomy or similar?

 

[FernRhizome]

Hi Francelle:
I started an earlier thread on gastroparesis and colonic inertia. You could look for it. I was on Reglan in 1993 and my personal experience (which may not hold true for you) is that it didn't help me and I got suicidally depressed on it so stopped it. Erythromycin put me in the hospital with chemical hepatitis which I later learned was because I have a mitochondrial dysfunction. I tried Domperidone but it didn't help me much. But some folks do well on any of these, just be forewarned if you start taking any of these drugs to watch for their side effects & monitor them. Cissipride saved my life in 1993, then caused cardiac problems in 1996 and was later taken off the market. I have gastroparesis and have to manage it without drugs. I am on anywhere from 1/3 to 100% liquid nutriton. I use high protein Boost. You want high protein if your calorie intake is low. Also try following a gastroparesis diet: low fat, low fiber, high protein (unless for any reason you are restricted on the protein intake because of other problems such as kidney problems). Good luck! It's no fun!!! I've been strugling with it for 18 years. Also check out the website: GPDA.org which deals with gi motility problems.

 

[Francelle]

GP management!

Thanks FernRhizome (are you a horticulturalist??) for that feedback.

Did your Gastroparesis predate your ME/Fibromyalgia or did it happen at the same time or later? Mine started on the very day most of my other ME/Fibro symptoms started in August 2007 but then the symptoms (which I now know to be the start of GP - albeit mild) abated until October 2008 just after I came out of hospital for a major lung infection. Then the GP symptoms came on with a vengeance.

I have tried Cisapride but it did no more for me than Domperidone which essentially almost eliminated the 24/7 nausea. Not denigrating the huge relief that was to (mostly) lose the nausea though. Cisapride is waaay more expensive here than Domperidone, so it was not worth me staying on it for the negligible extra benefit I was receiving.

I am basically on a liquid diet but can tolerate very small amounts of prawns, fish, white rice and tofu. I feel much better if I stick to the liquid diet but it is soooo hard. So many tempting things and smells around. I'm always pushing the boundaries - just in case this rotten thing has gone away - lol!!

Now pushing my protein intake a lot more since my levels came back the bottom number in the range - am using Beneprotein powder. Also using some medical food drinks which my dietetics department sent me free of charge. Quite a few 'slabs' of various types and flavours have arrived on my doorstep as I need them! They have been wonderful!

Speaking of Erythromycin my husband got chemical hepatitis after being on Eryth for one month for severe sinus infection. He does not have ME/CFS. It seems it happens sometimes but is quite rare.