Megan, the good thing first is that you have a doctor that understands gastric motility issues – many do not and will just keep subjecting you to unnecessary tests….. the gastric empty study is very revealing – I had abnormal gastric empty studies with solids and liquids 8 years ago because I was lucky enough to have found a doc who recognized with the severity of my neuropathy, that the probably cause was gastric lack of motility… it was….. he moved however, and its taken me years to find another motility specialist, who is wonderful… there are only a few meds that can help – but if the doc feels its necessary – try them! I could not consume anything without them….

I’m lactose intolerant – so extremely limited in what I can “eat” – just ensure (other products like Resource etc some people like better) – the key is what your body can tolerate. Having a milk shake however (too much fat to tolerate), or just pureeing food – is not the answer…. I hope you got to check out the diet sites – fiber, raw foods, and large amounts of fat are your worst enemy as they are very difficult to digest, as are many foods that may surprise you are taboo. Most people cannot tolerate any form of raw veggies, fruits, red meat, citrus fruits, there are many degrees of the disease, and some like me just a few liquids…. In my case, we are trying to avoid a J-tube which by-passes your stomach because of high risk of infection, etc….that’s a whole other can of worms to deal with.

The second I “eat” (drink something) I feel sick, like you, and just have to fight it because I know I have to eat to stay alive – its really 24/7 and never ends… but again, lots of people can fight it with meds that help more, or is not so severe. Its very difficult to function with any normalcy – life centers around eating – a very social event – and I crave food constantly and think about eating all the time – to the point of watching food shows, reading recipes, etc…. its like with health in general – you don’t appreciate something until you cant do it. Personally, I loved to eat prior to getting ill and did constantly all types of cuisine, being naturally thin I ate everything and loved it – I could name all the food probably on one hand that I’ve tried an not enjoyed…. So yes, it is very very difficult to live like this.

The key to drinking fluids, you mentioned the gelatin – is that while broth, unless it’s an expensive hospital supplement, doesn’t have enough nutrition, in order to get enough protein and calories you must drink something that has nutrition but as little fat as possible and NO fiber.

There’s a good support group on-line – and I've found thru it gastroparesis can have many causes – about 12% of us can trace it to neurological disorders. I also have cardiac dysfunction – not sure if from autonomic PN but it probably is

Anyway, hang in there – sounds like you have a good doc – look at the diets – try any meds if needed, and try to be as vigilant as possible to stick to the diet. Something as innocent looking like an orange or lettuce can put you in the hospital cause of the fiber, forming a bezoar in your stomach (a lump of fiber) – resulting in surgery.

Wishing you the best….

Thanks again kmeb!

A few more questions - I'm on a crash course here! Hehe!

How long does it take for a bezoar to form and how do you know if you have one?

What specialist looks after your Gastroparesis? You mentioned a gastric motility savvy doctor, is that someone related to Neurology or GI issues or another specialty altogether?

The doctor who ordered my gastric emptying study is an Upper Gastrointestinal surgeon who was going to operate on me on January 9th to do a fundoplication for the para-oesophageal hernia but then when a Barium meal came back and he couldn't see the hernia on that he suggested doing this test. So it was merciful that I didn't have the fundoplication done with undiagnosed Gastroparesis. This surgeon spends a lot of his time doing nutrition counselling as he removes stomach and oesophaguses in cancer patients and also does Lap Banding for morbid obesity so is very used to advising about various diets..... He immediately printed me off a very good article entitled "Diet Intervention for Gastroparesis" by Carol Rees Parrish. That is all I have really had time to read so far.

...however I think it could have some merit to consult with a dietitian soon - once I get my head around this a bit more!

I do understand about the need for all the food one consumes to be value-laden and not frivolous calories...but just occasionally????? Is it allowed? Like you my kitchen has Greek, Middle Eastern, Japanese, Chinese, Indian, Indonesian etc etc, cook books which have all been well used - such a pity!!!!

Do you have to cook for others in the house? I think that will be the hardest thing! Fortunate though that my husband likes cooking but one can only expect so much especially when he comes in from work tired and particularly in winter time!!! It's summer here now so it is easier!

Hi Megan,

Not sure how long bezoars takes to form – just know you don’t want to chance one!!!!!! Gastroenterologists handle GI motility issues, but the vast majority do not do this on a regular basis (usually just very short term following surgeries) so its very important to find one who understands the risks, causes, and treatments. I’ve heard so many horror stories of people misdiagnosed for so long – this is critical. Cant tell you how many times when I’ve met a new GI doc they want to do yet another colonoscopy – that’s not the answer and tells me very quickly they don’t understand the condition and keep looking! The neurologist may be in total agreement of what you have – but the GI will have the latest treatments….. (the surgeon is great that he discovered the condition, but will he treat you long term for the condition?)

Carol Parrish’s article is good – there is also a very complete diet out there – just google “gastroparesis diet” and will come right up – very comprehensive. I’ve seen a dietician, but they work with your doc – and the doc is the key here. I drink bullion broth for a savory taste – just small amounts cause don’t want to fill up stomach – but the more calories you can get in a small amount going in – the better! When I very first got sick I could tolerate very small amounts of ramen noodles (regular pasta too hard too tolerate) and it was wonderful to have a different taste and some calories at the same time. Before I checked the diets I ate tried foods that made sense to me might work – I was wrong!!!!!! (but the noodles were ok – my gut just got worse so had to stop)

I don’t have to cook for others in the house – but I would, we eat with sight, and smell too, and I’ve actually made dishes and given them away to others that I knew I couldn’t touch – just to smell and appreciate them…… not the same – but a small way to indulge….

Memorize those diets! And hoping you find a awesome doc to help you….

Take care,

I know it is a long time since I started the above thread but came across it tonight and thought I'd give an update to KMEB particularly!

Gastroparesis is still present. I have tried both prokinetic agents, Cisapride and Domperidone but the Domperidone has worked the best for me. It has reduced the nausea to only occasional episodes which is a huge relief.

Eating wise I am still mainly on liquids but for some reason can eat very small portions of white rice, steamed prawns, scallops and fish. Also tofu. At least this means I can order an entree size of prawns or tofu for instance if I am in a restaurant and feel a little bit normal. If it is too much my husband just finishes it off for me - hehe!

I have just this year been diagnosed with a gluten allergy which in some ways is no big deal as I can't eat breads, cakes, buns etc but have to now be aware of what may be hidden in liquid drinks such as thickeners.

I also have discovered that I have an egg protein allergy along with an allergy to a similar protein which is in milk, so a few adjustments I have had to make there.....otherwise Gastroparesis is just becoming a way of life to me now and I'm not fighting it anymore.

My weight loss has stabilised and in fact I have put on about three kilos. It doesn't look like I am a candidate at this stage for a jejunostomy or a gastric pacemaker....at least that is what I tell my GI specialist - who is a lovely man and very up with GP management.

I hope that you are doing better with your Gastroparesis! Any major changes?