St Bart's Gastro / gastroparesis

Appointments generally. Getting the correct diagnosis, finding the right doctor or dealing with the issues arising from being diagnosed with a hypermobility related disorder.

Moderators: gila, Rosie, Blaadyblah

Re: St Bart's Gastro / gastroparesis

Postby sheppeyescapee » Mon Dec 12, 2011 11:56 pm

I tend to maintain around 1,750cals a day and start losing around 1,400-1,500 cals a day. That's at 5'4.5" but I struggle to get in over 1,200 without feeling sick. Am having trouble getting anything in at the moment without being in lots of pain. When I eat or drink anything for a few hours afterwards I have a stabbing pain in my stomach and it feels like someone is trying to twist it :shock:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
sheppeyescapee
Carpal tunnel
 
Posts: 1258
Joined: Fri Sep 18, 2009 2:43 pm
Location: Stoke Gifford, Bristol, UK

Re: St Bart's Gastro / gastroparesis

Postby Rosie » Tue Dec 13, 2011 12:38 am

Hi all

Fi, I have a real problem eating few enough calories to lose weight. i am now on weightwatchers and I have to eat a lot less than they suggest in order to lose weight. I guess this is probably not helped by my low mobility, but even when I was most active I had the same problem. It has definitely got worse as I have got older and my IBS has got worse as well.

Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
User avatar
Rosie
Site Admin
 
Posts: 3354
Joined: Fri Jun 24, 2005 8:58 pm
Location: Brighton area

Re: St Bart's Gastro / gastroparesis

Postby serenity79 » Wed Dec 14, 2011 5:48 am

I have a huge problem with weight gain even though I barely eat. Prof G says I have motility issues and I'm currently trying to get referred to Pro A to see if I do have gastroparesis (won't hold my breath though, funding is unlikely) but I always thought it was only weight LOSS associated with it. But reading this thread, it all makes so much sense. I gained around 2 stone and just cannot shift it for the life of me. I feel constantly nauseated and just can't face 'a meal'. I survive by picking at little bits here and there.
HEDS, Autonomic Dysfunction, POTS, ME, Fibromyalgia, IBS, Icepick Headaches, Migraineous arm, Blepharitis and a cuddly toy.
User avatar
serenity79
enthusiast
 
Posts: 323
Joined: Mon Aug 03, 2009 3:57 pm
Location: Northern Ireland

Re: St Bart's Gastro / gastroparesis

Postby nemonie » Wed Dec 21, 2011 9:06 pm

I used an online weight loss website to monitor myself for a while and noted that on average I was eating around 1400 a day. When I trialled s*d valproate for my migraine, I experienced the 'increased appetite' side-effect and had to eat another 500 calories a day before I felt full. It wasn't until I moved over to topiramate (which has both 'appetite suppressing' and 'taste perversion' side-effects) that I dropped my calorie intake to around 1150, that I actually started losing weight.

Fi - I also sometimes have random runs of days were I'll drop a load of weight. I usually put it straight back on though.
Finally diagnosed with EDS-H and POTS after 20 years by the lovely Prof G \o/
Group Leader for Teesside & Co. Durham
User avatar
nemonie
addict
 
Posts: 861
Joined: Thu Oct 29, 2009 1:45 pm
Location: UK

Re: St Bart's Gastro / gastroparesis

Postby sheppeyescapee » Wed Dec 21, 2011 9:14 pm

I too can drop a lot of weight seemingly overnight, but then again instead of the normal +/- 2lb I can vary by +/- 5lb
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
sheppeyescapee
Carpal tunnel
 
Posts: 1258
Joined: Fri Sep 18, 2009 2:43 pm
Location: Stoke Gifford, Bristol, UK

Re: St Bart's Gastro / gastroparesis

Postby Rosie » Wed Dec 21, 2011 11:37 pm

Hi all

Weighed in yesterday, I have now lost 21 lbs so fairly pleased. Still got a long way to go though.

Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
User avatar
Rosie
Site Admin
 
Posts: 3354
Joined: Fri Jun 24, 2005 8:58 pm
Location: Brighton area

Re: St Bart's Gastro / gastroparesis

Postby sheppeyescapee » Thu Dec 22, 2011 12:55 am

My stomach definitely doesn't like this extra holiday eating anymore. Made me rather ill today :sick: Guess I'll just eat normally and have a little of the nice food.
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
sheppeyescapee
Carpal tunnel
 
Posts: 1258
Joined: Fri Sep 18, 2009 2:43 pm
Location: Stoke Gifford, Bristol, UK

Re: St Bart's Gastro / gastroparesis

Postby Fiona-Jane » Thu Dec 22, 2011 1:19 am

sheppey- thats what i plan to do... too much rich food has never agreed with my stomach and at the moment it doesn't really like any solid food so i have to chew loads, gets a bit boring after a while but not chewing that much will leave me with rather bad tummy pains and sickness etc.

i've never been that fond of lots of food so we've never really gone crazy at christmas, but this year i need to be even more careful! :roll: luckily turkey is one of the few meats my tummy rarely has a problem with...


are you on domperidone? if not it may help limit the problem the christmas food may cause you, it can be bought over the counter as 'Motillium 10'. peppermint capsules may help settle your tum and intestines too. :)

and Rosie- well done!!! :clap: :dance: it's best to loose weight gradually, a little at a time so it tricks your body into re-setting its adipostat (like a thermostat for fat) so once you reach your target weight it'll stay off as your adipostat will be set to that level and not at the level it was before you started to diet (and so would do all it can to make you go back to that level, hence why crash diets are pointless). but 21lbs is a lot of weight to loose, it's about a stone and a half i think so congratulations! :bday:


fi xx
Ehlers-Danlos Syndrome (Hypermobile Type) finally diagnosed Feb '08, and a baffling array of other conditions just so my EDS wont get lonely ;^D

my blog : My EDS and its associated randomness.....
User avatar
Fiona-Jane
addict
 
Posts: 988
Joined: Sat Jan 07, 2006 2:57 am
Location: London, UK

Re: St Bart's Gastro / gastroparesis

Postby loosebones » Thu Dec 22, 2011 4:35 pm

I thought there was another weight loss thread?

I'm being referred back to see Prof A and have an appt for 16th Feb...a while off so I have to try not to lose any more weight between now and then but at the moment I'm on a no solids diet and very little amounts - not very good for maintaining a healthy weight.
My stomach has been playing up since I had an ovarian cyst rupture at the end of October - is this related or just bad coincidence?
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
User avatar
loosebones
Forum Moderator
 
Posts: 1451
Joined: Mon May 21, 2007 1:46 pm
Location: west sussex

Re: St Bart's Gastro / gastroparesis

Postby Rosie » Thu Dec 22, 2011 6:10 pm

Hi all

OOps, got the wrong thread there :oops:

Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
User avatar
Rosie
Site Admin
 
Posts: 3354
Joined: Fri Jun 24, 2005 8:58 pm
Location: Brighton area

Re: St Bart's Gastro / gastroparesis

Postby Fiona-Jane » Fri Dec 23, 2011 2:02 am

losebones- i expect they moved your intestines around a little while trying to find the problem of the pain - maybe this has upset your GI system?

the pain could be stress related too, i get a worsening of my gastritis whenever i'm stressed and you've certainly been in a very stressful situation lately :hug: or it could be IBS from the stress- i find my IBS often makes my tummy more tender than usual.


i also get tummy pains when i'm very hungry- i dont get normal hunger feelings and just get really sharp stabby pains in my stomach when i need to put something in it. took me months and months to realise that those pains were hunger related!


hope your tum settles soon and so you can start putting on the weight you've lost :kiss: did you find a meal supplement that you're not allergic to?

fi xx
Ehlers-Danlos Syndrome (Hypermobile Type) finally diagnosed Feb '08, and a baffling array of other conditions just so my EDS wont get lonely ;^D

my blog : My EDS and its associated randomness.....
User avatar
Fiona-Jane
addict
 
Posts: 988
Joined: Sat Jan 07, 2006 2:57 am
Location: London, UK

Re: St Bart's Gastro / gastroparesis

Postby loosebones » Fri Dec 23, 2011 6:26 pm

Hi all

OOps, got the wrong thread there

Rosie


^ thought so

They did move my innards around a lot during surgery. I spoke to my GP again today and she thinks my muscles aren't working in sync. I've also had to send off a stool sample and am to see her after xmas. Fi, I'm giving the meal supplement you suggested a go - it arrived this morning but I've not given it a go yet. When they did the scope while I was in hospital they did also find out that I have the Helicobactor Pylori infection again so that will also be causing some of the problems.
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
User avatar
loosebones
Forum Moderator
 
Posts: 1451
Joined: Mon May 21, 2007 1:46 pm
Location: west sussex

Re: St Bart's Gastro / gastroparesis

Postby sheppeyescapee » Thu Dec 29, 2011 11:45 pm

Anyone been for the upper GI testing? I'm awaiting a letter about going for it. Will be testing for reflux to see if it is acid or liquids coming up and also for gastroparesis/dysmotility
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
sheppeyescapee
Carpal tunnel
 
Posts: 1258
Joined: Fri Sep 18, 2009 2:43 pm
Location: Stoke Gifford, Bristol, UK

Re: St Bart's Gastro / gastroparesis

Postby trekster » Fri Dec 30, 2011 7:07 am

sheppeyescapee wrote:I tend to maintain around 1,750cals a day and start losing around 1,400-1,500 cals a day. That's at 5'4.5" but I struggle to get in over 1,200 without feeling sick. Am having trouble getting anything in at the moment without being in lots of pain. When I eat or drink anything for a few hours afterwards I have a stabbing pain in my stomach and it feels like someone is trying to twist it :shock:


ive had 1 bowl of soup and 2 clemantines to eat today. Also had a pot of lemon tea. ive still got sharp stabbing pains from eating earlier and
the fruit repeated on me for hours later. Before today I used to use alka seltzer to help with stomach pain (not alcohol related) but it doesn't seem to be working.
Hard to tell if this is temporary or if i should see a doctor about it? Poo is darker as well.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
Carpal tunnel
 
Posts: 1478
Joined: Wed Aug 17, 2011 9:45 pm
Location: near Bristol

Re: St Bart's Gastro / gastroparesis

Postby sheppeyescapee » Sat Dec 31, 2011 1:36 am

I'm struggling to get any solids in at the moment and I get real bad pain in my stomach after only a few mouthfuls of liquids. My stomach is really bloated despite not putting much in there which seems odd :eh:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
sheppeyescapee
Carpal tunnel
 
Posts: 1258
Joined: Fri Sep 18, 2009 2:43 pm
Location: Stoke Gifford, Bristol, UK

PreviousNext

Return to Diagnosis and Doctors

Who is online

Users browsing this forum: No registered users and 4 guests