St Bart's Gastro / gastroparesis

[loosebones]

right here for you
http://www.hypermobility.org/forum/viewtopic.php?f=3&t=8459&p=161022&hilit=barts#p161022

[Blaadyblah]

Cheers LB!

[roqchiq]

Let us know how you get on with Prof A - I'm seeing him on Thurs!

[annie welsh]

Sorry ,... you have probably seen him by now ! How did it go I was well impressed with him.
What have your symptoms been ?
Hope he has sorted you out!
Annie x

[Fiona-Jane]

hiya,

i was supposed to have an appointment this month but royal mail lost my letter (along with ALL our mail for dec and jan.... ) so I had to get it rescheduled. problem is, its not till 25 march and i really needed to see the guys as my tums throwing it's toys out the pram and i;ve been really struggling to eat. i'm managing up to about 500 calories a day at a push, and i've already lost weight this month so i dread to think how much i'm gonna weigh by then!

although i know i can do that length of time without really eating so i know i wont do any permanent damage but i really could have done without it. but i suppose there's no point worrying as the situation cant be changed.

anyone at st barts on the 25 march and wanna meet up?

fi xx

[loosebones]

Sorry Fi, just had my appointment.

It went well even if he was running 90 mins late. I've been given some new meds to try, however there is nothing else he can do for me so I've been discharged. I'm not sure what to make of this but I guess we'll see what happens with time.

[karen73]

Wow Im suprised thereve discharged you like that, sounds odd doesnt it you poor t hing, u must get pain from this and need follow up what did the tests show up, im here if u need to talk my lovely I am having probls with my inbox not getting msgs so dont knowif urve replied.K

[karen73]

FJ I hope u get in soon, I have my first biofeedback with the nurse in Feb at St Barts, so that should be interesting then if that doesnt work I have to see the neuromodulation specialist for sacral nerve stimilation, I cant eat anything in the day only can take my lopermide to stop me going so I can have some peace when I go out, I can sometimes manage a sip of coke or water but its hard not to eat the whole day, usually I dont go out to physio to afternoon and am so hungry when I get home and cant do late apts or I really go down hill. I hope ur find some help soon. Hugs
K

[annie welsh]

Gosh Karen and Fi.....
My problems seem small by comparison with yours . Did your problems get progressively worse?
I have definitely gotten worse over the last year with my GI symptoms. (swallowing things sticking, severe IBS etc etc) I just wonder if this is just the start of things getting worse. Annie x

[loosebones]

Karen, what are you having the bio feedback for?

I've said previously on this thread what my results were but I'll post them again. I'm not sure what to do now and am just so confused. He has given me erythromycin to try and increase gut transit but other than that, I'm on my own.

Gastroparesis
Delayed colonic transit
striking and occluding rectal anal intussusception
moderate rectocele
prolapsed bowel

plus a few other issues but I can't go face anything else right now

[karen73]

Bio feedback is meant to help re train the bowel. With me I do not suffer from consitpation but rather have to be near a loo all the time, or take immodium when I got out, I have such a bad urgency and pain lthat has me bent over and nearly crawling to the loo, apparently the bio feed back will help make me not have so much pain and meant to stregethen the pelvic floor, I hope it helps!! andits meant to help u have more time to get to the loo bu if that doesnt work I will have sacral nerve stimialtiuon and that is where they will first test to see if this work and if it does they insert like a pacemaker in the form of a stop watch in the back of the abodmen spine and then that will send the right messages to the pudendal nerve/nerves that is damaged in my case so that I dont get pain and constant urge to use the loo all the time.

I really dont know whats going to happen at the moment, but I would trust the Prof Ive had 3 doses of antibotics which did help me with the bloating, but wasnt the cause of my problems I also get such bad back pain with the bowel probs waiting on a mri to make sure that there is no damage to the spine causing the bowel/urinology probs I get.

I suppose everyone is different with it.

Annie---- with me, it started really bad 12 yeras ago loosing 20kgs and was v ill basically looked anorexic, then ive had malbsorbtion probs as most of prob do- but everything was going through too quicky- causing all other probs but the tests finally showed a few other things, but I dont get the consitpation the opposite all the time, but b4 the runs started I would always even as a child bring up everything I eat it just comes up again, especailly dairy etc but I dont eat that but its annoying. So really everyone is different and hopefully ull have not had the probs too long and Prf A and team can help I do beleive he is a good man that wants to really help us all. Thank god for him because ive been to many gastros that mad me literally cry as they dismiised me and dismised eds/gut was related or it was in my head or stress, and now I find I do have structual probs it makes u mad but I am glad I have found some kind of help. So really in me yes it did get worse but ath was cause It took so long to dx the condition then another 3 years to get help after that to get help for the bowel!!

So has anyone esle had the bio feedback?

[annie welsh]

does frequency at night come into the equation? I can get up sometimes about 4-5- times a night. It seems that the minute even a tiny drop of urine gets into my bladder I have the urge to go! Codld this be part of the condition? Annie x

[barkingmad]

HI that sounds like an irritable bladder there is some of medication that you can have prescribed to assist with that. mind you if you take amitriptyline it also has a side effect in reducing the need to empty your bladder at night.

My daughter takes desmopressin or desomelts to help with her irritable bladder at night and it really does work. SO it may be worth asking your GP or even PM'ing Eloise to see if these are suitable in adults.

Hope that helps

[Eloise]

I know this is slightly off topic - but there are quite a few things that can help an irritable bladder. Firstly to cut out any irritants - i.e. caffiene and liquid intake (although have to be sure you don't end up dehydrated). Then there are the pelvic floor exercises and bladder training exercises (there are nurses specially trained to give this advice). After these then there are quite a few drugs. Amitriptyline, as well as being used as a pain modifier can also be used to treat night-time urine frequency. Then as Donna mentioned there is desmopressin (but mainly for kids bed wetting) and quite a few other - such as oxybutynin and tolterodine. I have just been doing research on this area at work, and unfortunately there is no difference between the drugs on effectiveness to know which is best to try first.

[barkingmad]

Thanks eloise, tho daughter is on desomelts at night and they work, they are thinling of putting on her on amitriptyline as well for pain etc. The oxbutlyin that she takes in the morning are less effective but gravity and activity would also have something to do with this.

She is under the nurse and physio for help, but I think she will probably get the most help when she is in GOSH for two weeks. She has just had a scan which confirmed it was def irritable bladder rather than stretching bladders etc which I think is better.

I would be really interested in reading your research on this Eloise.