St Bart's Gastro / gastroparesis

[teaspoon]

as far as i understand it, because gastric emptying studies are a snap shot, it is entirely possible to have a normal test sometimes even if your motility is generally slow. also if you have the eggs, then it's quite a quick-emptying food for most people, so that can affect things. it's like having a one off pulse reading, rather than having a heart monitor on for a week - the longer you're monitored, the great the chance of finding something. try not to feel down about it

[crossfell]

I had a motility test, where you swallow capsules with rings in then after 5 days are x-rayed to see if the rings are still in the bowel, and my test came back fine too (even though I only go to the loo about every 4 days).

With everything that's wrong with me hardly any of my tests ever come back abnormal - I'm the sickest 'well person' you're ever likely to meet

x

[sheppeyescapee]

My stomach has been soo painful despite the meds

No wonder people lose so much weight. I've forced myself to each as much as my stomach can handle and I haven't even managed to get to 1000cals for the day I have a follow up appointment at the end of May, so glad it isn't that far away.

[loosebones]

Sheppey when is your follow up appointment? Mine is on the 31st.
And yes not being able to eat solids does mean rapid weight loss. My body seems to have adjusted itself to the liquid/puree diet and I'm now gaining a bit of weight.
Have you tried baby food? Might sound odd but saved me big time!!!

[sheppeyescapee]

Well it's a phone appointment saves me going all the way to london. It's on the 25th May. Hoping they send the report quicker this time as I only just got the report from the phone appointment that I had in December Need to go to my GP to find out the results of the manometry as they won't send me those ones for some reason, but they have sent a copy to GP, I know I have something going on with my swallowing.

[sheppeyescapee]

My insides appear to be unhappy no matter what I eat, it is slightly less painful with liquids/puree but still rather painful nonetheless. Was rather hard to stop myself from curling over in my chair with the pain

[Fiona-Jane]

have you been prescribed painkillers to help with that? i need to take pregabalin for my tummy pains as they're just awful and refer all up my chest and back...


i noticed that i spasm badly after i eat and that pain makes me double over in pain, but taking a buscopan tablet before i eat (and waiting for it to work before i eat) really helps with that... maybe it'd help you too? and if i sit up straight after i eat i dont get as much pain- as soon as i slouch a little the pain is awful, i assume as the slouch position stresses ligaments or something.... i'm not sure but i've had GREAT posture after eating lately!


and you'll probably find certain foods hurt more than others (but i find all food and drink hurts... theres a flare of pain with every swallowed mouthful, and each flare is worse than the one before. although it's kinda cool to be able to tell without a shadow of doubt when the food or drink hits the stomach!). i find pear and cucumber just awful, the pain is diabolical... but i tolerate lactofree and soymilks with far less pain. and rice seems to work ok for my tum but potatoes work far less. by working out what foods trigger my worst pain and cutting them out of my diet i've been able to lower my overall pain levels a little and make me more likely to want to eat my next meal.


i've also found that the bigger the meal the more it hurts me, so i eat loads of teeny meals. and i mean proper teeny, like what you'd feed to a 3year old child. tummy likes this amount and doesnt start yelling unless i continue eating. have you broken your meals down into smaller, more frequent, meals? if not, this may help with your pain levels like it does mine


and a warm wheat bag or bottle on the stomach as you eat is also pretty good at preventing any really bad spasms and can reduce my pains a little....


hope you dont hurt too much tonight! xxx

Fi xx

[sheppeyescapee]

No I haven't been prescribed anything for this kind of pain. Thanks for the suggestions I'll try that. Hot water bottle helped a bit

[serenity79]

Even liquids make my stomach feel sore, although apparently the tests showed nothing wrong with the stomach itself. I can still get excruciating pain at times, with it tender to the touch. I eat like a baby bird.

Not that it's affected my weight any, I'm still somehow hugely overweight I think the Pregabalin I'm on has a lot to do with that though - still, I can't see how the weight isn't dropping off me with all I can manage to eat.

The VSL#3 and Erythromycin seem to be helping with the gastroparesis though, so that's something.

[star gazer]

I have been under the GI team at my local hospital since November, referred by g.p. I had an endoscopy to check for blockages and that was claer except for a sliding hernia (apparently common in EDS). They came to the conclusion that my tummy issues are down to EDS and autonomic dysfunction and the unit there was not equipt to deal with it. They wrote to my G.p asking him to refer me to Prof Aziz. My symptoms are sudden upset tummy needing to get to loo fast (that however after 11 years suddenly stopped after the barium swallow it caused a really bad episode of diahorrea then bowel packed up) I have difficulty swallowing and a lump in my throat which we now think is food sliding back up from the stomach, the last solid meal I had was 4 months ago which after 24 hours of the food staying put in my stomach and not going down it eventually came back up completely undigested. bloating, used to pass wind like a trouper but that has stopped too, dont burp either I have regurgitation and reflux. and bowel only sees action about once a week if I am lucky. I was sent a letter that was copied to my g.p from Prof Aziz saying that they will see me and now to wait for the appointments people to get in touch, They said i will have tests then a telephone appointment to give me results then discharged back to G.P, the letter arrived a couple of weeks ago, I know it will probably be a long wait. At the moment I am prescribed Ensure (lost 12 Kilos which was in fact a small bonus for me as I was a tad over weight) So I switch betwen baby porridge and baby food and Ensure fo calorie top up. I founf I cant digest lumpy baby food and also stuff with certain veg and tomato.
I have some questions if you can help.

How long after you are told you will be ssen by the team is it before they call to make an appointment and what is the wait approx for appointments.
What tests do they do on the first visit, do they do them all on the first visit or do you need to go back for more depending on the problem.
thanks for any info/input
star gazer
ps swallowing tablets is big trouble as they seem to come partway back up the oesophagus too and sit there tramadol is the worse as I cant cough it back up if needed, when the midodrine gets stuck I can cough that back and start again sorry to be so grosse. have tried taking a swig of ensure after tablets to keep them down which sometimes helps, also found that the only sure way of keeping the liquids/puree from popping back up is to eat standing up.

[Eloise]

Some tablets can be broken in two or crushed. Some capsules can be opened and contents eaten in yogurt. Also, some come as liquids. Have a word with your local pharmacist who can advise you. Even if you can get changed onto the brand with the smallest tablets - or more tablets of the lower strength so you can swallow them easier. I have loads of info about liquid forms etc at work - but can't get to it till tuesday - but you can pm me and I will look into it for you.

[star gazer]

Thankyou Eloise, I will pm you about the meds.
star gazer x

[loosebones]

Will anyone be at Barts next thursday 31st? I have an appointment at 11.25 and will be around after for a little bit.
Will be getting the results from my MRI scan and colonoscopy and also see how everything is going.

[sheppeyescapee]

Had a phone appointment with Proff Aziz and he was very patient. The findings from the upper GI testing confirmed the findings from the gastroscopy that the lax cardia is causing the reflux and that have a floppy oesophagus. Been told to have a high protein, low carb diet the times that my stomach isn't tolerating food so well. Will wait to see the report from the call as I'm sure I've forgotten a lot of what was said.

[star gazer]

Hi sheppey, did they do your tests on the firts appointment or did you go for assessment first so they could decide what tests to do, I am a bit lost with this one as it will be my first visit when I get the appointment and I am not sure what to expect, could you give me an insight, I know we will all be a bit different but an overview will give me some idea of what to expect.
many thanks
star gazer