Is it Gastroparesis!?? Please help

Digestive health
1

hello, I am 14 years old and have been suffering with shocking stomach and abdominal symptoms all my life. I get severe chronic nausea bad acid reflux, feeling full and occasional bloating, burping and flatulence. The GP couldnt work it out after much testing was done so we tried chinese herbs which worked for a month or two but after trying to reintroduce dairy (was previously off it) symptoms all came back and never left. The fodmap diet didnt work, cutting out dairy and gluten, not even the gaps diet worked...so..we went and saw a gastroenterologist who suspected gastroparesis and pescribed me domperidone which i have been taking for 2.5 days now and am feeling slightly better. Had some ondasetron for the nausea but ran out and cant get into doctors for another script for a few more days now any one have any ideas or home remedies that wont make me feel worse abut relieve the nausea?

does anyone know how long it should take before i would start seeing big improvements (from the medication)?

i struggle to sleep as the nausea keeps me awake, anyone have any ideas or advice to fall asleep quicker?

i ate quite a large lunch today and now i am feeling very uncomfortably full, feels like there is heaps of pressure in my stomach and it is bolging slightly, and i feel nauseous. Will ginger help? Any suggestions on how to get rid of this 'full' feeling??

thankyou, every response is very highly appreciated

2

We were told to take Domperidone for minimum

4 weeks

before being able to tell, if it helped or not.

Gastroparesis was not diagnosed by symptoms though, but via 'gastric emptying' study, a pain free test, where you eat and drink food with a tracer and get to lie down and be scanned frequently over hours to see, how the food (=tracer) is moving.

Domperidone didn't work for us unfortunately, hopefully it does for you.

all the best!

3

Try eating 5 meals a day instead of 3 and eat less at the meals. I was told to stop eating before you get full and save what you have left for later on to eat.

4

Awesome, thankyou! Did you end up finding something that worked for you?

5

Ive also been taking ondasetron occasionally when the nausea gets really bad, does anyone know if this will and is actually helping?? Does ondansetron help with nausea in association with gastroparesis?

6

yes, it does.

Ondanstrone works on the serotonine level.

It works instantly (the dissolvable one) like a pain killer, does not need to be taken continuously like domperidone for weeks.

We needed 8mg, not 4mg,

dissolvable ondansetrone as a one off dose once or maxium twice a day for months on a daily basis to get nausea down 2-3 out of an intensity scale of 10.

Now only occasionally (like twice a week).

 

7

Nope, unfortunately not. 

SMA exclusion is planned (= superior mesenteric artery syndrome, when aorta and SM are in an too acute angle to each other and squeeze duodenum, that runs between them, mechanically = stomach cannot empty into it well) via ultrasound and maybe MRI.

 

8

one side note though:

ondansetrone slows the gastric emptying down further.

But we still took it if nausea was so strong, that walking was impossible due to sickness feeling.

Ondansetrone does work 

and it can be taken during domperidone therapy.

You are not diagnosed with gastroparesis yet, are you? (I mean: measured nuclear medicine gastric emptying study)

If you really feel badly nauseous, you take it, gastroparesis or not.

Make sure though to always mention all the medications you take when considering taking any other medications since there are sometimes interactions.

Best of luck!

9

No, i havnt been officially diagnosed yet. Hopefully if the domperidone gives me a big improvement (in symptom relief) then we will get a test done.

i have been taking the tablet form of ondansetron, not the dissolvable one. It works slightly but doesnt get rid of the nausea fully, do you have any suggestions on how to reduce the nausea fully??

also taking movicol as constipation is a severe problem, im drinking heaps of water, eating poached apples (no skin) and a banana daily but constipation is still an issue!! Why is this??

10

Also just quickly, i am going to see a paediatric dietitian sometime late this week of next week but in between now and then im not really sure what im supposed to be eating!😅😬i am eating broths with each meal, some boiled meat, boiled vegetables (usually pumpkin, kale and carrot. Sometimes cauliflower and broccoli. Had some potato (roasted) today). I also eat poached and peeled apples, ripe bananas. I also have been having sushi (homemade) with rice, japanese mayonnaise, sweet chilli sauce, carrot, cucumber, tuna, salmon, chicken and avocado. I have been totally off dairy and gluten for a long time now (dairy escpecially) and was wondering weather I should try to re introduce? I reintroduced egg this morning and i havnt notice any worsened symptoms except for now (5:00 it started getting worse) is this from the egg or...?

are there any foods i should be avoiding (because of the suspected gastroparesis?

what are good foods to be eating which are safe to eat? What foods are good for nausea but also gastroparesis friendly?

thankyou, its all deeply appreciated

 

11

Never found anything that would take nausea away,

but if it was 8/10 in severity, the dissolvable (swallowing was not possible due to nausea and vomiting) would bring it down to bearable 5/10 for few hours.

Had all kinds of diets (FODMAP, gluten free, diary free, high carb low protein when vomiting got too strong, then low histamine, gaps-which was high protein and histamine...) and nothing helped. Only noticed that chocolate was an absolute no go for stomach, so are nuts/grains/rice for abdominal pain, but not stomach.

Hence after 8 months of trial and error, writing down food diaries and so on, we are back to a normal diet excluding a few things and nothing got worse, but also not better. Being more on the carb side, than protein side I have to say, being just easier to digest it seems. I try to hide some soluble fiber since we love avocado.

Also dealing with chronic constipation with Movicol like you (how funny), the problem:

gastroparesis friendly diets are low in protein (hard to digest) and very low in fiber!!!, but for constipation one should have some fiber plus hydration......bit of a catch 22 and need to tackle the bigger problem.

Happy you see a dietician, we did too. Please ask about this catch 22.

The gastroparesis test should actually be done prior medication to indicate medication. Also since medication should alter motility, .... how should it represent what was going on without medication, if that problem existed in the first place prior medication. I don't quite understand it. If gastroparesis existed with medication, well, it's obviously not working or not enough working. But if there was no gastroparesis with medication, one will not know, if you needed to take it. ??? But little do I know. There must be some logic behind it.

Motility problems run through the whole digestive system.

So if the stomach is slow, it comes to no surprise the colon is slow.

Or if the colon is slow due to constipation, the stomach often keeps food cleverly back.

But as to why: that is the big mystery. Some say 'temporary virus damage', some say 'general systemic muscle/nerve' weakness, some say 'diabetes', some say 'connective tissue issue like hypermobility syndrome', some say 'hormones', some say 'SMA', some say 'pylorus hypertrophy'. Hence the basic blood tests (electrolytes, glucose, thyroid) and scans/scopes are usually done to rule out obvious and  treatable cuprits.

Once those are not found like in my 14yr old girl, 

they shrug with their shoulders and get into the 'ideopathic' (=we don't know) draw, which is highly unsatisfying.

No idea what is going on.

It is good that you note down what you eat and how you react.

Proteins stay longer in stomach anyway due to being digested in stomach.

Yes, write down what you eat when and when you notice a change in symptom severity. That will give clues for docs, dieticians and for you to avoid certain things. The reason is often not found, but if you find foods that are easier than others, then that is already a big win.

We are on small, but very frequent meals, too.

All all the best!!!!

 

12

Gastroparesis diet is a low fiber diet.

Popsicles are great! But they have the oh so bad normal household sugar. Well, one thing at a time especially if only gastroparesis is the main problem.

Soft food, cooked veggies if you can tollerate fiber, not raw, pasta (not wholemeal). Yoghurt, soups, stews, no hard meat.

LOW FAT!

If you search the internet, you will find good sources for food ideas.

There are 3 stages of diet depending on severity.

I try to past link here, but might not get through.

This is just to get an idea and write down very good questions for your dietician, like I said: gastroparesis diet and constipation diet....hardly go together.

Best of luck.

The egg...well, it is hard to digest, but allowed in stage2 gastroparesis and better than e.g. beef. Usually goes out in 4 hours. If you are delayed, it can stay longer. Gastroparesis is not gastroparesis, they differ in severity.

Our emptying study test was actually done with an scrambled egg and milk.

Good luck!

 

13

past? paste!

14

Thankyou so much for all your advice and for sharing your experience and knowledge on this!

I tried FODMAP, gluten free, dairy free and gaps but none worked 😞 Sadly...

Any foods I should desperately be avoiding??

how and which foods should I introduce and when?

Thankyou

15

Pretty sure low fat all the time at the moment.

It is very hard to tell you anything precisely here, since you are unique and need a dietician supervision plus your own experience to take into account.

I tell you from our experience (which might be not the way to go for you):

I would introduce low fat yoghurt (even it is dairy) and see how it goes.

I would stay away from chocolate, but not stay away from popsicles. (even sugar) and enjoy watermelon. One needs to enjoy something still.

I would not introduce raw veggies yet prior dietician, but cooked.

I would eat pasta to hearts content.

Ah, and chewing your food very well is very important especially for gastroparesis patients.

Hence juicing and pureeing foods (baby food) is already a win no matter which cooked low fat food it is.

Nightshades like tomatoes (even potatoes) are often actually causing a problem. No egg plant (is also a nightshade), this thing is very hard to digest even cooked. We have no problem with potatoe though. But tomato sauce and eggplant (and peel of capsicum) has something that causes more stomach (not abdomen) upset.

I would make juices, if you had a juicer.

That was our survivor kit: a juicer. (it throws out most of the fiber, but with gastroparesis this is one of the things to be thrown out) apples, carrots, pears, even oranges, beetroot (and I hide celery tumeric as well.) - we have not problems with fructose (FODMAP didn't work and breath test was negative), so we can juice whatever we want.

your dietician will help you a lot, but many things come down to your own experience since no one shoe fits all.

Rice seems to be often oh so good and bland, but for my girl mostly causing more pain in abdomen, maybe also since it does tend to constipate.

Many are against banana and we have no impact by banana.

We love a good banana milkshake (plus a bit of vanilla ice cream). Personally no problem regarding nausea.

Please let me know what your dietician told you about gastroparesis diet, please please. One can take recommondations and try and see how it goes. Nothing is an easy recipe for everyone unfortunately.

16

Thankyou so so much!! I'll be sure to let you know anything that my dietician suggests. Haven't been told when I'm going to the see the dietician yet but apparently (and hopefully) it should/will be this week sometime.

17

I had what I believe to be gastroparesis for 12 years. I had the gastric emptying test and that came back negative but I’m still pretty sure that’s what the problem was. It was truly horrible, I felt sick almost all of the time and would vomit 4-5 times a day. I just felt like that all the time, it wasn’t triggered by eating or anything and was generally slightly worse in the mornings. It really ruined my life. I ended up suffering quite severe depression because it’s no fun feeling sick all the time. I went to therapy and was prescribed anti-depressants. It indirectly led to the break up of a long term relationship too. Domperidone change my life entirely. I was only prescribed it because I was sent to occupational health because I had so much time off work sick and the person I saw, who was a retired GP suggested it so I went to my GP and basically demanded it. I think there is some reservation from doctors to prescribe it because it has been linked to heart problems but a well respected consultant I saw told me he thought these claims were a bit over blown. He said that if you have an existing heart condition it might be best not to take it but that if you don’t, it’s unlikely to cause one. From the moment I started taking Domperidone I no longer felt sick all the time. I also take Lansoprazole but I know it’s the Domperdone that works because if I don’t take it for 2-3 days the feelings of nausea immediately return. I know I’ll be taking it for the rest of my life but that’s ok, I’ve never suffered any side effects from it. When the occupational health guy first mentioned it I thought he said Dom Perignon, I’d definitely take champagne if I could get it on prescription!!

18

Hi there.
I’ve suffered Gastroparesis for 25yrs+ now. It’s a debilitating and awful condition. It has stolen everything un my life. I’m a mere 7st, + can’t eat any solid food. I used to be fed via a peg tube, but after a nasty incident, it was removed from me. Now i’m prescribed Ensure Plus milkshake drinks. I’m constantly being sick, and in the last 6mths, i’m now incontinent. No medication helps. (only really hot baths. And plenty of them. Up to 8/10 a day).I’m really fed up with this, and at times, I really wish I wasn’t here.