St Bart's Gastro / gastroparesis

[loosebones]

thanks for the reply - I do take the movicol everyday - the 3 glasses of it were on top of my normal dose. Thankfully I get to see Prof A in Feb.
Hope you get your problems sorted and your questions answered.

[Fiona-Jane]

has anyone had a problem with the reports from prof A (or his team) taking ages to arrive???

i'm waiting to start on a course of antibiotics to treat my gut infection that's been causing me loads of cramping and pains. been waiting more than 6 weeks now and nothing. sent 2 emails to the prof's secretary, and to the prof and recieved no reply from either..... the longer i wait the worse my health gets. the pain is hitting levels that i cant tolerate and i've started to have a massive problem tolerating anything solid. tum even has tantums about liquids. I know they're really busy but i've waited patiently for long enough now, especially considering they've 'forgotten' to give me more than 1 appointment in the past (requiring me to chase them up about it and wait and wait and wait for a reply about it), and i had to wait 5 months longer than i should have done for my phone consultation in early January and wouldnt have gotten it at all if i hadnt been adamant that i should have had it in july. so my 4 monthly followup became more than 10 months . i wouldnt have minded if everything was going ok, but i've been having big problems all last year and they know this.


dont want this to get totally out of control like last time when i couldnt eat anything thicker than water for several weeks and had to wean myself back onto solids once i'd managed to finally get rid of the infection and settle everything down...... it took FOREVER


i guess i shouldnt have agreed to the phone consultation- should have put my foot down and been adamant that i wanted to be seen in person, at least that way i could leave with a prescription and not have to wait for it to be written up and posted to me whenever they decide to get round to it.



my pain and reflux is so bad prof A has doubled a lot of my meds but i cant start the extra doses etc till that darned report arrives. and every week the pain and reflux are worse. everything i eat and drink comes back up into my mouth over and over again, it's really not nice.



so if any of the team at barts are reading this- i'd like my report please.


fi

[Fiona-Jane]

I've had an email this morning from prof A telling me that he's looking into it.... surely it's a coincidence that i get a response only a few days after i write a ranty message on this thread???


but glad that it'll soon be sorted. really cant wait to start the extra dosages.....


fi xx

[lil_miffy]

PCT are still deciding if I can have funding to see prof Aziz. Now hitting the 7th month from when I first asked gp to refer me.
Saw my local gi dr yesterday and he has admitted he's stumped and hasn't treated anyone with the level of dysmotilty and severeity of related prblems.
He's reffering me to a specialist in Durham who specialises in constipation and dysmotility. He 'warned' me the dr uses some 'odd' methods like a stomach stimulator (like a pacemaker for the stomach) and surgeries that other drs wouln't use for chronic constipation (iv not found a gi dr who uses any kind of surgery) so it sounds like he's a local version of Prof aziz in his treatment methods. Only thing is it means waiting a few more month putting up with my problems. the local gi think my stomach isnt working properly becuase it can't empty becuase of the severity of the backlog in my bowel.
Hes also perscribed procalopride which i think is the drug that prof aziz mentioned at the resi but if i remember rightly prof said it only works if used before it gets to the stage of severe dysmotiliy but still hoping it has some effect.

[barkingmad]

Hmmm I had forgot about that drug and taking it early on! Thank you for reminding us.

I really hope you all have some success ASAP.

[cat]

Hi,
I was wondering if its worth seeing Prof Aziz with regards to gallstones & IBS symptoms?. I had no idea the bloating in my belly/nausea/abdo pain had anything to do with EDS3 - how naive am i - its all connective tissues!
What i think i am trying to ask, is it to late to go & see him seeing as i already have gallstones...?
Any advise is well appreciated, thanks in advance
Cat x

[sheppeyescapee]

I have an appointment on the 28th April and I am actually quite glad that it is so soon. I didn't really have a choice in appointment, it was either that date or I would have to be re-referred. My only issue is that it is at 9am which means leaving stupidly early from Bristol, but needs must. I've been getting rather bad reflux since January, and now my stomach wont let me eat all that much, a few mouthfuls and then it is unhappy. Quite bad constipation too despite taking 3 movicol a day. Stomach feeling like it is constantly on fire I hope this appointment will help

[lil_miffy]

Well Im sad to update that the procalopride didnt work. I was on it for a month and it didnt improve things, instead it cuased alot of bleeding when I went to the toilet and made my irrigation almost impossible. It also wiped me out energy wise and I spent most of the month in bed barely able to stay awake for more than a couple of hours a day.

It was the last option for medication so it looks like some kind peg tube to irrigate through or other kind of surgery is the next option. If only I had been reffered to Pro Aziz in september when I asked the medication might have worked, or that the drs could have taken my gi issues seriously much earlier on. It's so frustrating to think that my quality of life is in the hands of dr's who quite often just will not listen.

[sheppeyescapee]

Just got back from London and my appointment at Barts. I saw someone from the team called Dr J and he was very nice indeed He definitely knew his stuff, and appears to have been involved in a number of specialities! I got to talk about my concerns with regards to the GRS (gender reassignment surgery) and how that might affect the bowel problems, so we are going to try to get me in the best possible position I can be before going ahead with that surgery. He mentioned some diet and I can't for the life of me remember what it was now. I'm to take out gluten first for a month, then dairy, no processed foods/spicy/fatty, lower the caffeine intake. Obviously I'm not expected to change all those at once, but over time. Slowly get my weight down, but am not going to do any kind of diet program anymore (causes too much obsessive behaviours), only weigh myself once a month. Up my omeprazole, take a pro biotic, some other meds which I forget the name of. Gotta go back for some testing as to find out potential for biofeedback. Lots to think about, just gotta wait for my report to come so I can get going on all these things

There was a problem with the lifts being out of order but they saw me in the downstairs room instead Both myself and Em came out feeling rather positive about how the appointment went.

[gila]

could it have been the FODMAP diet ? it's the relatively new thing for IBS type probs
xxg

[sheppeyescapee]

That's the one, thanks Gila I'll look that up.

[Fiona-Jane]

hiya,

does anyone with gastroparesis or other gastro-intestinal dysmotility problems get intense spasms of their stomach and intestine? anyone know how to make them stop? they're proper driving me mad today, everything i put into stomach (even water) brought them on and they're lasting hours and hours and really quite uncomfortable now. gah!


any tips would be fab (please!!), as yet this is the one problem that i'm still really struggling to control- nothing seems to work, just gets eased a weeny bit with antibobo's (antibiotics ) then vsl#3 but i only did that a little while ago and would ideally not need to take antibobos every 3 months to keep this under control!

fi xx

[nemonie]

Buscopan - (it's an anti-spasmodic called hyoscine butylbromide) you can get it off the shelf or over the counter and it's awesome, especially when combined with heat packs. You can also ask you doc about getting a higher dose by prescription.

[sheppeyescapee]

Got my report back from St Barts a couple of days ago 3 new meds to try and gotta go back for anorectal physiology On the problem list it says bloating and reflux symptoms - possible functional overlay, wondering what that means

[evenwen]

Has anyone else had a problem with the anti/probiotic treatment just not "taking" long term?

I managed to sneakily get my GP to repeat the antibiotics a couple of times over the years so that I could begin again as the symptoms all come back whenever I have a big illness, but they won't refer me back to St Barts as they seem to think the other team (Prof Mathias') should be the ones doing it. Not much help considering how nasty it all gets and how fast.

I've done it intentionally and unintentionally (meds prescribed for bad kidney infections) about five times in three years but would much rather speak to someone otr know if this happens a lot. I remember at st Barts they said it can take a couple of goes when I was first given the meds and asked my docs to keep me on the VSL permanently.

Tis all getting grotty again- very upsetting/frustrating.