St Bart's Gastro / gastroparesis

[serenity79]

Have to get some more tests done locally, including a small bowel series, but the door is still open for me to be referred to Prof Aziz (had been told originally there was no chance, but I kicked up a bit of a fuss about that...) all depending on funding of course. Am showing some symptoms of gastroparesis so it's important I get properly tested. Food sitting undigested and rotting in my tummy after 18 hours and having to make myself ill to get it out is NOT good

[Fiona-Jane]

hiya,

i saw prof A's team about my gastroparesis and was prescribed domperidone to ease it a little- it can be bought over the counter as Motilium10 so maybe have a word with the chemist to see if you can take some in the meantime while you wait for tests etc? may be useful to keep a strip of tablets lying around just in case something decides to sit in your tum for far to long... i know how that feels and how sick you get once it finally goes through (i have a weak retch reflex so cant make myself sick so stuff can only go one way- into my body. had to buy activated charcoal in the end to stop getting food poisoning every few weeks )

i was also recommended to eat several small meals rather than just the standard 3 a day and that helped me a lot, i found that if i didnt put too much into my tum it processed its contents much better. eating soft foods that are low in insoluable fibre also helps me loads. most gastroparesis treatments are dietary, with the meds given as extra help if needed. the usual dietary changes are pretty common sense- removing the hard to digest foods eg fried foods, raw or fibrous veg etc and eating more foods high in soluble fibre as it pulls water into the intestine and so helps stuff to keep moving through the small intestine- if motility of this part slows down due to constipation it has a knock on effect on the tummy motility.


hope you get your tests soon and get some answers and a treatment plan drawn up really quickly

oh and loosebones- it usually takes the team about a month to send any reports out to the doctor, and informing them that tests will be done but it took them a good 2 months to find me a slot for my tests (got told a fortnight before them ish). but then i had to wait 4 months for the results. i think cos prof A's team is so inundated at the moment that they're taking much longer than usual to sort this stuff out


fi xx

[sheppeyescapee]

Hmmm... I still haven't had the report from my phone appointment in mid december I normally get something from them about what they are doing but nope nothing yet.

[trekster]

i would chase it up when you can mate.

[bexley]

Hi I recently had an Endoscopy to look at why I was suffering from gastric problems. They took a biopsy and are testing for something called H.Plyori ?? I was wondering whether anybody else has or has been tested for this same condition ??

[Fiona-Jane]

hiya,

i've not been officially diagnosed with it, but i have the symptoms and get treated with antibiotics twice to 3 times a year (followed by vsl#3) so it's likely i have it. but as long as i take at least 2 courses of strong antibiotics a year my symptoms stay under control.


fi

[gila]

helicobacter pylori is a fairly common (in 'all' peops not just bendy ones) bacterium which can cause gastritis, ulcers and even some stomach cancers. t'was only found to do that sometime in the 80 s.
a course of anti biotics tends to get rid of it in most peops.
also be prepared for the eventuality that endoscopy/biopsy show 'nothing wrong', that no h.pylori is found ... that they cant find the reason for your gastric probs and that they'll call it a 'functional disorder' (IBS is a 'functional disorder' which afaik means there is nothing wrong with the individual organs but they just dont function right together, the 'communication system' between them doesnt work right-not unusual in us bendies)
good luck!
xxg

[Fiona-Jane]

thats a good point, Gila

my gastro symptoms are relatively severe with gastroparesis bad enough that i've lost the ability to eat solid food and ibs, reflux into my mouth (even with my meds.. where i technically shouldnt happen) and general dysmotility and spasms throughout my gi tract and oesophagus but my endoscopy and biopsies where completely normal. also had an MRI of my stomach and intestines and that came back normal too as all my structures are physically normal but my autonomic nervous system cant control the function of my organs.

my problems were shown using the functional tests- the gastric empty tests, ph and impedance and manometry of small bowel and oesphagus . they were horrid tests but at least they showed how dysfunction my GI tract is and so allowed me to start on a treatment plan

[pinkmongoose]

Hi everyone! I searched for Dysphagia, but didn't really come up with anything helpful, so I started a new thread. Please feel free to move.

I have some pretty bad reflux, which also occasionally presents with dysphagia. The dysphasia feels like a lump in my throat, like any solids get stuck there. It is painful and extremely uncomfortable, and I cannot eat more than a bite of solid food when it happens. Episodes usually last 24-48 hours. Sometimes it gets bad enough that I cannot even get liquid down. I also occasionally vomit at night (it awakens me) and I have never been able to eat within two hours of waking without vomiting. I take Prilosec twice daily and eat antacids like they are candy. That can help with the reflux and vomiting some, but does nothing for the dysphagia.

I had an endoscopy less than a month ago and it came back "beautiful." So there is no visible physical explanation for the severity of my symptoms. The Dr.s office will not let me talk to the doctor, only his nurse practitioner. I have told her every time I have seen her that I have EDS, a connective tissue disorder. She tells me that she is unfamiliar with EDS, but that it cannot affect my stomach or esophagus and "isn't important." I have asked her to look into EDS, since I don't understand how she can be unfamiliar with it but so sure that it is unrelated to my stomach symptoms. I have seen her three times and she has not looked into it. I have also presented her with some internet research I found explaining EDS and related issues, but she doesn't seem to have looked at them.

Dysphagia has been bad of late, so I am going back next week.

So my questions:
1. I know HMS/EDS can cause GERD. Can Dysphagia also be EDS related?
2. If my problems are caused by EDS, is there any point in continuing to see a gastroenterologist or trying to educate the nurse practitioner about it? Is there anything they could do, or anything over the counter/old remedies/etc. that could help, particularly with the dysphagia? Or should I just give up with them and learn to deal with it?

I'm losing weight and super frustrated. I live in a small town, so changing gastros isn't really an option, particularly since I am skeptical there is anything a doctor can do to help anyway. Any advice, or even a "yes, I've had something like that- so you aren't crazy," would be appreciated! Thank you!

[sheppeyescapee]

I'm struggling to eat solid foods at the moment and get stabbing pains in my stomach, palpitations, shaking and so on every time I eat. Am managing to keep within a reasonable calorie limit (around 1700ish a day), forcing some solids down and topping up with shakes and yogurt. Am awaiting test results from St Barts should come soon as they said they would send it on the 5th. Have booked a phone appointment for the end of May so hoping they have some answers, it's a good thing I have a fair bit of excess weight so can afford to drop weight, although 9.6lbs in 2 weeks really isn't healthy

[Fiona-Jane]

maybe just liquify foods or cook softer foods instead? i used to think that i had to eat solids all the time (and that it wasnt acceptable to basically make baby food for yourself to eat as an adult, but i was wrong ) and i really struggled.... until i gave up earlier this year and let my tum get whatever food consistency it wanted and i feel soooo much healthier. my pains are less and my blood works shows that my vitamin and mineral levels are the best they've ever been so i wish i'd given in years ago!


and in soups and mashed foods its pretty easy to boost the calorie content by spiking it with oil or butter, its kinda harder to do this with solids.


at the moment i pretty much live on porridge and soup and take a daily multivit and mineral tablet to help fill any gaps in my nutrient intake... and i expect you'll get the same dietary info from the gastro guys that i did- i was told to avoid insoluble fibre as it irritates the lining of the intestines and makes pains and spasms worse, and tends to hang around for ages cos its so indigestable so makes gastroparesis symptoms worse. and was told to eat more soluble fibre as it pulls water into the intestine and helps prevent constipation (and all the horrid symptoms that come with the slow transit). was told to avoid acidic foods and drinks unless they were with another, non acidic, food or drink and so it wont be so hard on the stomach. told to avoid fruit juices as they often make acid reflux worse and can make the tummy ache.


it was also suggested i follow the FODMAP diet but many of the foods disagree with my tum so we scrapped it but it may help you


i was also told to keep a food diary for a few weeks and note down everything i ate and drank and my body's reaction to it so we could figure out the foods that my tum didnt like so we could eliminate them from my diet. this helped me tons as i was able to cut out the foods that give me the most symptoms and so over time my tummy pains have reduced. it took bloomin ages to do the food diary thing but it was definitely worth it


i still get very colicky pains that i find baby gripe/colic water helps a fair amount. i'm currently using Boot's Gripe Mixture and its made my evening much more tolerable tonight (as my pains are quite bad today), maybe gripe water may help your pains a little while you wait for your appointment?


i got prescribed domperidone to help my tummy empty time and you can buy this over the counter if you get desperate and want to give it a go, you can do the same with buscopan (that i take to ease the pains from the spasms). i also take pregabalin for my tum pains and the pains that get referred along my nerves to other parts of my body which hurt like heck, but these make me pretty drowsy so i need to be a bit careful about how many i take in a day


hope your pains ease soon

fi xx

[sheppeyescapee]

I'm currently on domperidone, laxido, probiotic and docusate for my GI stuff but still managing to be constipated even with all that! Got a phone appointment in May so will discuss it with them then. Everything feels like it sits like a brick in my stomach and it becomes bloated and painful, will trial a liquid only diet for a week or so to see how that goes. Thanks for the advice Fiona

[gila]

and if in your week of trying the liquid diet you find yourself overwhelmed by an urge for something solid... even if it is just something like crisps... maybe try to chew the solids until they are mush in your mouth before swallowing it, might maybe help a wee bit
xxg

[crossfell]

Just wanted to say to sheppeyescapee that I'm having very similar symptoms to you. Mine started 3 weeks ago with dreadful palpitations after eating or drinking anything, extreme weakness in my arms/legs, colicky pain, severe fatigue, muscle spasms (particularly in my legs) and for me severe pins & needles all over my body (particularly in my bum, I assume due to the stimulating effect of eating). I felt so ill after I ate anything at all, even a drink of warm milk, that I thought I was dying And while I wouldn't wish this on my worst enemy, it's comforting in a way to read you have had/are having similar problems.

My blood pressure plummets after I eat (called postprandial hypotension) and the palpitations are called postprandial tachycardia. My GP is certain it's because my autonomic nervous system is very poorly (due to both EDS and long standing M.E. - both of which cause POTS and other autonomic nervous system issues).

Thankfully mine has calmed down a little, but I'm still feeling really ill after eating particularly in the mornings (all I can manage is a Slimfast sipped very slowly for a good 2 hours after I wake), and I still can't eat after 7pm or it sets the palpitations off again. I've so far lost half a stone in 2 weeks (usually LOVE my food and have a very healthy appetite).

I'm eating little and often (though have to force myself, as eating anything at all sets the pins & needles off which is really horrible), adding salt to everything as my blood pressure is so low, trying to increase water intake (for the same reason), and eating low GI foods to avoid blood sugar spikes. I'm just hoping it will settle down, but when my whole body seems to go into shock after I eat it does make me feel really anxious and a bit panicky (esp when the palpitations kick in) because you can stop most things but eating isn't one of them (I'm only a size 10 to start with so really don't need to lose a ton of weight)!

Jo x

[sheppeyescapee]

I had my results from the gastric emptying test and they came through normal Wondering what's causing the bloating, stabbing pain when I eat solids. I made the mistake of going back on solids and am regretting it, my stomach has hurt so much! So back on the liquid diet as my stomach doesn't hurt anywhere near as much and the bloating is greatly reduced.