St Bart's Gastro / gastroparesis

[trekster]

Hugs mate and get better soon.

[loosebones]

Having serious problems and have now lost over a stone (I was only 7stone 11lbs in the beginning). I've been given an appt at Barts with Prof A for 16th Feb but that's too far away. I was admitted to hospital again on NYE as I was delirious and incoherent with pain. I've never EVER been in that state, never make a fuss but I was so out of it I was yelling and crying uncontrollably as well as writhing and thrashing about in pain (not good for my joints).

I'm desperate for help but ended up discharging myself from hospital on NY day as they wouldn't refer me for any stomach tests etc even though they said I need a colonoscopy. All they said was that I have to go back to my GP.

Well mum and I are going to see my GP on weds and hopefully she can do something.

I'm lost, confused and very down at the moment, not to mention very weak and frail.

[sheppeyescapee]

Really sorry to hear that mate. I hope your GP comes up with something. Is there no way of getting the appt with Proff Aziz moved up or your GP to get some input from him over the phone? Lots of virtual hugs your way

[trekster]

loosebones have you tried complaining to PALS about their disgusting behaviour? i didn't think they would send someone home in agony without a referral.

[sheppeyescapee]

Got a call from Royal London hospital saying that my upper GI testing will be 7th March will be doing gastric emptying test, manometry test and acid testing. Not looking forward to that.

[trekster]

Good luck with that mate.

[loosebones]

My GP has sent Prof Aziz a fax asking for his help urgently but not had a reply. Yesterday I sent an email to his secretary and she replied today that she has passed it on to him. I really hope I get a response soon. I'm down to just under 42kgs and still can't eat. I'm so weak right now and am just skin and bone. I've now been accused of making myself sick and being anorexic...not the case, I love food, I'm desperate to eat and hate feeling like this.

[serenity79]

Apart from Prof Aziz, do any of you know of any really good doctors who understand gastro issues in EDS (and possibly Dysautonomia) in the UK?

[gerblet]

I saw an awesome gastro doc last week. Obviously I can't post her name but pm me for her name. I was referred to her by Professor Grahame. She was Professor Aziz's fellow or registrar can't remember which, she totally understands the gi probs we get with EDS and autonomic problems. She took loads of time explains what's going on with my insides, why it doesn't work properly and is putting me on a fodmap diet, just waiting for the dietician to contact me to sort it out. She also took loads of blood that showed I am vit b12 deficient!! Probably because I am not absorbing it from the gut, deep joy more injections and blood tests
She has also put me on domperidone to improve my motility and hopefully stop me being sick all in all a successful trip to London and I would recommend her to people with EDS gi problems. She is based at UCL.
Has anyone else tried the fodmap diet, if so how did you get on??? Feeling a bit overwhelmed at the thought of being on such a restricted diet. Does anyone else get food on prescription??
Any info or advice gladly received

[serenity79]

Thanks, have PMd you

[loosebones]

I had an email on monday from professor Aziz's secretary offering me an appointment on thursday 19th Jan at 10am. I turned up but didn't see the Prof but one of his registrars. He was really nice, really concerned about everything that's going on and also stumped as to how to help. I'm now on Duloxetine/Cymbalta to help with my stomach, my pantoprazole has been altered to twice daily instead of 2 in the morning, I'm to get a sachet of something to neutralize the bile in my stomach (will inform GP in letter), I'm to have a bone scan as I've not had dairy/lactose for 5 years, am to carry on with the resolor/prucalopride but if problems continue I'm to stop it, I'm to come off the fluoxetine, and I'm to have fresubin build up drinks 3 times a day. He also wants me to have a colonoscopy but is afraid I'm too weak for the prep so will be thinking about that before writing to my GP. I'm now to return in a month.
I hope this helps. I'm so scared about it now. I'm living on laxatives and throwing up everything I eat

[trekster]

i hope it does help you as well.

Wondering about your bone scan ive also been off dairy for a number of years but i think im younger than you.

[RainbowsButterflies]

LB - I'm really glad your appointment went well

Prof G is referring me to someone re my gastro issues - I haven't had his report yet so not sure who.

[loosebones]

Any idea how long it takes for letters to come from the consultants at Barts when you've been seen and tests requested? I really want some tests and answers...I can't cope anymore and really really want this colonoscopy if only to give me some reassurance. My GP wont refer me for the scope until she gets the letter from the consultant..that could take ages! AAArrrggghhhh

[barkingmad]

Glad it went well. as usual the popular clinics are busy so it can take a few weeks. if you don't hear within 4 weeks call the secretary. X