St Bart's Gastro / gastroparesis

[sheppeyescapee]

Had my testing today at the royal london hospital. Blimey that place is a maze! I had a whole bunch of tests, the balloon, the stimulating one, ultrasound and the barium meal. By far the worst was the barium meal. The good news was that the sensation and nerves are fine in the rectum and that the problems seem to mainly be in the upper rectum but they couldn't say exactly what until they've looked at the scans, plus there was a bulge as well where it had moved into a space. Think the blockage is happening further up inside than they tested for. It wasn't anywhere near as unpleasant as I thought it would be, but now my insides are protesting about being prodded and poked The one time I go for tests and my bowels behave more than they usually do (although the researcher says that's pretty common, the anxiety of the tests and wot not ).

Will wait to see what they had to say in their report. Next I need upper GI to be looked at

[loosebones]

sheppey the tests aren't pleasant but have you found now they're done that you're a bit relieved? I was so relieved when they were done but now find I've blocked all the tests from my memory and can't remember a thing.

I had my follow up on friday on the phone and it wasn't Prof Aziz but one of his colleagues. She was very nice and a bit frustrated that my GP had only done one out of the 4 things that had been asked for. I'm to stop taking the metoclopramide as she thinks that is what is affecting my prolactin levels but she couldn't recommend anything else to take as a substitute so I'm to do without and hope the effects aren't too bad. I need to up the stool softener as I'm still having problems with my skin splitting down below. She wants me to start taking calcium supplements and is faxing my local hospital for my latest blood test results. I'm still concerned about my stomach as it really isn't behaving right but will see what the letter says when it comes through and where I need to go from there.

[evenwen]

Gave up on getting my GPs to agree to get advice re further treatment since tests at St Barts etc. Rang around and got called back by Prof Aziz's secretary a couple of days ago. She was very kind although she couldn't really help and i thought the following info would be useful (as i haven't seen it elsewhere on here- Mods please correct if I'm wrong!).


In summary: the system has changed (possibly due to sheer number of patients?) and so the team there can no longer take referrals from GPs for and further management of problems/treatment, only for initial advice.

I will need to get a referral to a local gastro enterologist, who Prof Aziz can write to and advise re my treatment (presume this local doc has to write to him first though!).


I hope this saves anyone else the months of asking and head scratching i've had!






It is rather frustrating as I have been trying to get my GP to prescribe antibiotics for my repeat cycle of the initial treatment since January and they won't give them to me "For no reason" (I don't think they understand the treatment, I've been so bad in the past I asked for those specific antibiotics to treat the kidney and UTIs which I get as a direct result of the dodgy tum, but I want them to "get" this ). I just want to know how often it is ok, or even usual to repeat it. They keep refusing to refer me for anything without a massive fight- so I've booked an appointment and just need to cross everything as I'm getting worse by the week.

[sheppeyescapee]

Had my follow up phone appointment this morning. The test results basically said that the transit was fine but that because of the laxity there was a pouch in my rectum which is where it is getting stuck, hence the blockage and then loose stools behind the blockage. The bloating and reflux are still quite bad despite the meds I'm taking so they have ordered an endoscopy. Need to go on some antibiotics and to carry on with the gluten/dairy free diet as that seems to be helping. Need to find better ways to deal with stress as they impact it too.

[Fiona-Jane]

hope the endoscopy shows something useful! but eventually we'll both find out exactly what's wrong with our guts and ways to improve them!


i'm back for more tests and off my tummy meds as of this morning, until my last test on sat 20th. i was fine for most of today but now my symptoms are rearing their ugly heads and are apparently annoyed at being controlled for so long. i never realise how much good they do till i stop them.... and end up feeling sooo sick.

but only 8 more days..... got it as a memo on my phone to beep me on occasion to remind me that this will all be over soon!


having a 24 hour ph and impedence test on wednesday and thurs (and oesophageal manometry at the same time), gastric empty test on fri and endoscopy with biopsies of my oesphagus and duodenum. great...... already had a gastric empty a few years ago and remember being bored to tears... not this time- got the rest of my ESA50 form to finish! why should i use my electricity to type up the form when i can use someone esles...


hopefully they'll show why my tum and oesphagus likes to spasm. it's been getting worse over the last few years and it should have improved as my general stress levels are at an all time low and so IBS should be settled.... but still spasming so methinks something else is also making me spasm.


sooo cant wait for sunday night and i can take some lansoprazole to put out the fire in my chest!


fi xx

[Sue New]

Hi Fi,

Good luck with all your tests. I had the 24hr ph and impedence test and oesophageal manometry last year. My tests also showed my oesophagus spasms but they haven't been able to work out why. I have also been booked in for the gastric emptying test in September. You say you have had it before? Can you give me an idea of what it involved please?

Many thanks,

Sue xx

[Fiona-Jane]

hiya,

the gastic empty test is ok (not painful) but just very boring! you eat some food with an isotope of something in it and then record how much of it you breathe out over the next 4 hours or so and so work out how much of it has been digested etc. all you need to do is breathe into a little foil bag every 20 mins and these are processed by the machine either all at the end or every now and then during the 4 hours. mine was collected at the end as the scientist man was quite busy.

you're left alone for much of the test and so it's a good idea to take plenty of stuff with you to keep yourself entertained!


fi xx

[Fiona-Jane]

discovered today how nasty the high resolution oesophageal manometry test is. the tube was almost as big as a biro pen, with black rubbery rings around it. and was really painful, especially when you choke on whatever they make you eat. sooooo never doing it again!

the impedance and pH tube is much smaller in comparison and is ok. just annoying to have to push buttons on the unit whenever i get symptoms.... after i eat and drink they're pretty constant for at least 2 hours so it seems like i never stop pushing the darned button. but one down (and a half )... 2 more to go.


fi xx

[sheppeyescapee]

Had my report from the phone appointment and the test results from the anorectal physiology. Says that the transit is normal but functional rectocele and mild inussusception causing rectal outlet dysfunction. Need to go for a gastroscopy and maybe upper GI physiology.

[sheppeyescapee]

Have my appointment through for endoscopy which is on the 3rd October, have had to come off any acid reducing medication. Since coming off all that stuff my stomach has been going mental, my stomach feels like it is constantly on fire and the reflux has greatly worsened. At least I know the meds are helping! They didn't get rid of the reflux completely but enough so that it was only mildly uncomfortable rather than like it is now. I still have another week to put up with this, luckily I can afford to lose the weight so am not too bothered about the weightloss that has been happening. Although 6lbs in 4 days is rather alarming!

[barkingmad]

keep your chin up! x

[sheppeyescapee]

Had my gastroscopy today. They tried to do it through the nose but my nose was too narrow so had to have it done through the throat in the end. That was rather unpleasant! Sure makes the eyes water. The findings were Dysmotility (partially lax cardia). Hiatus Hernia (very early stages) and Diverticulum (juxta-pyloric). The Dr that did the gastroscopy has a step-daughter who has EDS and said they had only been talking about it just yesterday! Said that what I have is quite typical for EDS. Glad to have got it out of the way

[buni29]

Hi everyone

After being recently referred to prof. Aziz I finally had my tests for my tummy problems i've Been experiencing. Initially it was thought that I had severe dysmotility but it turns out I have a very fast Rapid Gastric emptying? I'm very confused as my previuosly tests usually always show that my gut is very slow in transit & that things take much longer than move along than normal hence is why I get so much pain, nausea, bloating etc. Now my most recent test shows the exact opposite, that I'm actually emptying my stomach contents too fast? Has this happened to anyone else? Is it possible that because of severity of my pots & my eds tat I may be suffering with both slow emptying & fast emptying? Not too sure on what to believe from the results as my symptoms are still the same regardless of what treatment I'm given? Any advice would be appreciated.
Hugs

[Eloise]

I have the feeling I have both. Sometimes I can eat things and they go straight through - hungry again in half an hour and mucsle cramps further down etc. However, on the whole I have a very slow transit - possibly about a week end to end and leaves me bloated and bunged up with feeling full and nausea! I think it is related to my POTS etc. Also, I know it is one of the criteria for IBS is alternating slow & fast transit (and symptoms of constipation/diarrhoea).

[Fiona-Jane]

hiya all,

has anyone with gastroparesis noticed this too?

i eat far less calories that i'm technically supposed to need and I gain weight fast when i eat near what i'm supposed to on a regular basis..... this article on gastroparesis has a few very interesting few sentences: (click HERE for the article) especially this sentence: “ an assessment of food consumption patterns in a large gastroparesis cohort revealved that daily caloric intake in such patients averaged <60% of recommended levels and 64% of patients consumed calorie-deficient diets” (page 2, 2nd paragraph).

i've never eaten as many calories as i'm supposed to and just assumed that i need less. i presume cos i've been in a mild state of starvation from when i was weaned onto solid food and so adapted to deal with it. 60% of my recommended daily caloric intake is about 800 calories (actually 840). so no surprise that i gained 2 stone in almost 3 months (so i'm really quite overweight for my 4'7" frame) when advised to eat no less than 1000 calories a day.... actually gave up after 2 months but didnt drop back to 800ish until the end of month 3. and it's taking it's sweet time coming off me.... . should never have listened to my dietician

kinda hoping my body does it 'weight dropping' trick where a large amount just falls off me in a few days with no effort by me... although thats not very healthy. would be convenient though.... make my clothes fit again!


fi xx