St Bart's Gastro / gastroparesis

[evenwen]

I was wondering if anyone else on here has been seen by Prof. A. at St Bart's re the stomach/guts part of their condition?

I know that research is being done here and I'm a little unsure of how I should be reacting to the various meds I am trying out (and how long it should take for the investigative procedures to be carried out- though I guess that is down to my local hospital ). This is not an ideal time as i'm at someone else's place over the christmas break and it is proving a wee bit anti-social

I was utterly thrilled with the way I was treated by him and the doctor working with him. The sensitivity they displayed was so heartning, especially as I had been in a very bad place in the weeks leading up to my appointment. I had another piece of "madness" shown to be physical and symptoms which have been causing e distress since I was a small child now make sense to a certain extent.

I know i find peace in discovering the mechanics of things, and i'm lucky in that.

Just hoping I can compare experiences...

[loosebones]

I am booked to see him in feb for the first time.

[Fiona-Jane]

hiya,

i've been seen by him a few times, and all his team have been really friendly to me! i had some investigations done and they were both done by people at the Royal London Hospital. i live near central london so i had no need to use a hospital more local to me, maybe have a word with them and ask if its possible? they were really accomodating for me and even organised for me to have one of my investigations (small bowel manometry) over the weekend.

i'm in their research program and quite happy to be one of their guinea pigs as i get to try any new treatments first!


fi xx

[evenwen]

They are lovely people

Anyone who can walk in after reading my notes and tell me straight off that I had neither bulimia or IBS gets to do any research they like on me *does best guinea pig squeak*!

Also- it was the most gentle examintation I've ever had. I had been going to see gynae's on and off for years because for the pelvic/abdominal pain and they all left me in agony. They could learn a thing or two, and I suspect, a lot of that pain will be cleared if this treatment is successful.

It looks as though I just have a very long wait for the investigations as my local hospital is run into the ground, but I will be seen there. Hopefully before my next appointment in four months

I'm not daft enough to pin all my hopes on it, but any reduction in the pain/symptoms in this area will free me up to do more physio (at the moment working on pelvic/abs is liable to set off sickness) and make me more reliable in general. So it would open up the world for me a little more.

I'm having some really interesting reactions to the regime so far- but i don't know if that would take this off topic?..

[elka3131]

I have looking for any information about this in the search function but I could not really find anything, so I hope its ok me starting a new topic..

I have been diagnosed with gastroparesis but they are still doing invesitagtions etc to find the cause etc.

It all started just over 1 year ago when I started vomiting, bloating and having severe pain. I was admitted into hopsital and stayed the dec18th- jan30th. I had an NG tue and was nil by mouth for 4 weeks. I was feed through a tube and my iv liquids.

Anyway since then i have been diagnosed with severe gastroparesis. I am under the care of the doctors at St Barts hospital in London. At my first appointment she asked me to do things like touching thre floor putting my thumb on my wrist etc. I did all easily and told her about my joint pain and dislocation. She referred me to the physios herself and caried on with my investigations. I have since been diagnosed with HMS

I have since seen a differnt doctor in gastro St Barts and he says my gastroparesis may be related to the HMS. The HMS may not cause it but it is making it worse due to the 'stretchyness' of things. I am due to have a small biopsy in Jan/dec which should provide some more answers.

In the mean time, I was wondering if anybody else here had HMS (or EDS etc) and gastroparesis. I'm not sure exactly what my question to them is but any information they can provide would be greatly appreciated.

Thank you
Ellis x

[gila]

evenwen- I'd love to hear about your regime, reactions to it and of course probs that lead to them suggesting regime!

elka- I've come across quite a few HMS/EDSers on other sites with a 'g p' dx...
and I think fiona-jane has probs with 'slow transit'- but I think for her the slowing is not in the stomach but further along- see here
viewtopic.php?f=3&t=7900&p=129198#p129198

xxg

[Fiona-Jane]

hiya gila!

i have delayed gastric empty too. the consultant said it was severe but i dont think it is as its never really bothered me that much as long as i dont eat solid foods! i'm completely fine with liquids so i eat a lot of soup- me and my handheld blender are best friends . my small intestine moves too fast but then my large intestine slows down again (i think- i tend to get very constipated).

i was put on Domperidone to help my tum empty at a more normal speed. you can buy it over the counter as motilium. it works ok, not perfect but any improvement is great! it helps the reflux quite a lot as there is less food/fluids in my tum to come back up!

fi xx

[elka3131]

I found that link interesting. i had a manometry about 4 weeks ago (I hated it). I got my results back, He showed me th graph that mine made next to a normal one. He showed me the anormalities that there were. I can not rememer the name but it was not like it should be.

I dont know whether the prolem is my stomach or where yet. They are going to ry and find out with their long list of investigations.

Fiona-Jane, have you had any other affects from the Domperidone. I have been on it about 2months (at a low dose). I get it by prescription. I have not seen any improvment in my gastroparesis but have had some other sideeffects from it, that have been concerning me abit. I was wondering if you had had any?

Thanks
Ellis x

[Fiona-Jane]

not many side effects apart from an increased tendancy to get very constipated if i use too many tablets a day and i hget quite a bad belly ache just as the tablet starts to work but it wears off in about half an hour or so. i used to get a bad belly ache after i ate and used to last for several hours and this 30min ache is less severe than my usual ache so i dont mind it. i think ive been quite lucky with the side effects as the guys at Barts said not everyone can use it.

i've only recently had my manometry too and also hated it, and it was even worse having to travel on public transport with the tube in!! did you get any sedation or local anaesthetic offered before having the tube fitted? just curious as i didnt and it was rather uncomfortable!

fi xx

[elka3131]

Prof A at St Barts prescribed my Domperidone. I have seen him since but forgot to mention the side effect when we mentioned the fact that i will be having surgery jan/feb.

Even though I am on a very low dose I lactate ecause of it and im not sure that it is good for me. I am 17 and do not want problems in the future. Maybe I should mention it to him before he starts talkin next time.

What dose are you on. At the moment I am on ///// times daily. Depending on results of other tests they will either change my med or up the dose.

I refused to travel on public transport with the tube in. I would have to get the undrground and then a train ack to Colchester. My mum aranged hospital transport for me.

I did not get offered any sedtion or aneasthtic or numing spray or anything. To begin with, he could not get the tbe in at all. It made my nose bleed. I had had a NG tube before. When the problems first started I had NG tubes for 3 weeks that needed changing every 4 days. They were draining my stomach and also feeding me through a thinner NG tube. The manometry id look slightly better because it was behind my ear. Before it was taped round my nose with bag on the end.

Te doc at St Barts must have thought I was a real wimp because I was crying before it even started.

Have you had a biopsy? I m scared about mine
And do you know what has caused it for you?

Ellis x

Mod edit - removed dosage details, please read the site rules

[Fiona-Jane]

hiya,

i'm allowed to take the same dose you are on, although i asked if i needed to take quite that many and they said that if i preferred to take a lower amount i could do. they let me work it out by trial and error, and i found that my body prefers me to use less tablets and just stick to liquids (eg soup) for the meals where i wasnt using a tablet and take my time eating it. i found that i got very constipated if i took the full dose all the time, it feels like my intestines just cant cope with the amount of food that it has to deal with, if i didnt have this problem i'd take the full dose!

luckily i dont lactate on them, although my chest has got a tad bigger lately, which might be a coincidence but i'm not complaining!

i dont think they would have thought you were a wimp- they seemed to be genuinely friendly and open people and i expect they see many people who are scared of getting a procedure etc done. i appeared braver only because i didn't know what to expect, the last time i had a nasogastric tube in i was a very small child and i cant remember it! if i have to have the test again i'll be rather apprehensive as it was very uncomfortable indeed! my nose didnt bleed but it was very sore (and hurt for weeks afterwards), and although the tube went into my tummy relatively easily it wouldnt go deep enough into my intestine (apparently i must have a little bend in my intestine that other people dont have) so they had to keep pulling the tube out a little and pushing it back in- it gave me a really sore throat! on the last try it went in, luckily!

i haven't had my biopsy yet either, but its not urgent so one of my consultants said i'll probably get it later this year. i definately dont have VEDS so i'm in no rush to get the biopsy done as i'm kinda getting sick and tired of seeing doctors, ive seen so many lately- its very odd going from one extreme to the other. one minute i'm ignored as an attention seeker, the next everyone wants to see me!

fi xx

[barkingmad]

hey all, my daughter is 2 now, and has eds3, she is tube fed into teh jejunum due to gastroparesis, hers dosnt work at all, she has a tube coming from stomach which drains it off for her, or she'll just vomit constantly. we only found out all her bowel probs are eds3, she was diagnosed nov 08, we were told back in the may though, but had to wait for a def diagnosis. her bowel is all dilated all through, very slow transit, plus colitis.

i know of two other kids with the extremes of poppys condition, but no others.

shes on 2////// lansoprazole, domperidone, ranitidine, erythromycin (gastric stais), sulfasalazine, hyoscine patch (aspiration), hydroxyzine, ferrous, folic,dalivit,etc etc the list is blooming endless!

think the meds are pretty much the same for adult or child.
we'r under a gastro team at gosh!

kim x

[Fiona-Jane]

i tried taking ranitidine a while ago and it made my gut even slower. basically everything ground to a halt and i couldnt eat solids for approx 6 weeks.... i'm not sure if this is a usual side effect or just my body really not liking it!

fi

[elka3131]

I used to take erythromycin when my probelems first started and it did have a positive effect on my gastroparesis. However, the doctor discovered 4 weeks latrer that it was making my autoimmune condition worse- which was not great. i just wish that my two doctors had communicated BEFORE starting the erythromycin- it woulf have made my life a little easier.

[evenwen]

I got a bit confused and had to look gastroparesis up. However it looks like that is one of the bits they mentioned as they want to do a stomach emptying test on me alongside the endoscopy, colonoscopy and barium meal and enema to check nothing else nasty is happening to my insides other than what they said were symptoms they are now see lots of folk with H/EDS displaying.

I'd been vomiting and having severe stomach pains since I was a small child alongside all the other symptoms of "IBS" which went manic when I hit puberty. My mother decided I was making it all up so i got no treatment for my childhood. I decided I must have Bulimia after a few months of wanting to make myself sick after eating and that was how i treated myself as i also felt the need to binge. Doctors I saw during these years finally diagnosed IBS when i was 19 after the first episode of spending an entire night crying in pain in the bathroom with diahorrea. Later on I was treated for clinical depression (but with no reason found right up until my bendyness diagnosis, lol). I leapt at the chance to see someone about all this as my poor aunt had similar probs and had to have a foot and half of major intestine removed when they finally believed there was soemting wrong and took a look when she was my age. It looks like she has what i have now- oh what a shock my family aren't "getting" the hereditary thang.

My symptoms, Gila, consist of repeated abdominal pain (severe tenderness all over lower abdomen, with features of allodynia), constipation and diahorea, bloating (up to five or six inches at times) and vomiting since early childhood.

Food sometimes just "stops" for days at a time. I can't go to the loo and swell up with crazy gurgling sounds and food just sits there not being digested at the stomach end. Often this results in my throwing up with sweats and the stomach cramps resulting in severe toilet visits which can be sudden and last hours ( I keep a glass for water in the bathroom so i can rehydrate- sad, but useful). I feel faint when i need to "go". My breath is embarrassinbgly bad. I need to keep clothes for big days when i am swollen out of my normal range, so i have a few pairs of size 18 trousers (instead of the usual size 8 waist). Its highly stressful having constipation which creates an upset stomach, but I think I understand now that a blockage creates a build-up of nasty bacteria- that explains the "fermenting" feeling i'd always get as the bloating ensues. If nothing is moving further down then nothing can got through and i also feel like stuffing myself; possibly a n attempt to push things through my system? but also, if there is a bacteria imbalence then i believe you can't get the nutrients you actually need from the food so maybe this makes you want more.

This would all link to the pan gastro intestinal dysmotility which has been mentioned in my notes as being common in EDS patients because of the lax connective tissue!

So... I'm being treated with a stong antibiotic followed by a scary strong probiotic (these seem to have had some positive effect already but it takes a long time) and i've got some laxatives to use along with the Motilium (I think that is what others on here are taking) to stop the being sick so much. Might not be able to take that last one any more as I already had lactation before i started it (have had for 10 years now) and I'm sacared of aggravating that as its so much extra discomfort.

I'm very interested by the idea of liquid foods for worse patches! (if it gets too bad I can't hold water down which frightens me, so i'd like to head it off). I have found huge amounts of peppermint tea very useful as a genearal tonic and was taking multi-vits with probiotics before i went on the stronger stuff too, having done my own research and heading in the right direction. They both helped me with the milder everyday symptoms. Highly reccomend it- Yay!

Sorry guys- that is a really long reply. Wikipedia is great for medical terms explanations