St Bart's Gastro / gastroparesis

[Vicky C]

Hiya Everyone,

I am under Prof A and have been for a long time.
If it was not for him i would never have been Diagnosed ( Long Story )

As some of you may already know i have a long list of health conditions including Severe Gastroparesis , Small Bowel Neuropathy , GORD , CRPS , EDS 111 .
My situation now is that i have a PEJ line directly into my bowel ( A Feeding Line )
I have to have fluid on a drip during the day with electrolytes in and a specialist Feed ( Perative ) Overnight on a drip.
I also take a large amount of Medication and have to inject Cyclizine Daily to control Nausea.
As you can imagine i am having a difficult time but i have to do this to Survive.

I know i have asked before but if there is anyone that is reading this in similar circumstances please PM me as it would be good to talk to someone who knows what it is like to cope with this Condition.
Also i would be happy to help anyway i can if anyone wants to ask me anything regarding this Condition.

Gentle Hugs to you all
X

[Fiona-Jane]

I've just had a letter from the central appointments people at st barts..... My appointment has been rescheduled from 25March till 19 AUGUST. yes- AUGUST. thats one hell of a reschedule, especially considering that it was initially supposed to be in January and was moved to March.

I havent been able to eat solids since the 1st week of january but the ensure drinks have slowed down the weight loss to 1.5-2lbs a week which is a safe amount to loose for a short time but not until August as I'll weigh only 33kilos by then (bmi of only 15). i've already lost 5.8 Kg (12lbs ish) since the 4th Jan...... so the reschedule from Jan to March was bad but not to the point that i'd do me any real harm. having to wait till august is soooo not good!

I've emailed an told them that i need to be considered an emergency case as by 19th August i'll be very ill and i'd really rather not get admitted to hospital to be tube fed. lets see what they say..... if they say that they cant do anything about it then i'll be contacting Prof Aziz's secretary about it as it's totally not acceptable.

I normally see them every 3 months so having to wait 8 months to see them is not good.


i'm sooooo angry and a little scared that i'm gonna be getting very sick by the end of this year.


fi

[Lindsly]

wow, fiona. i hope you get everything sorted out quickly. does this kind of Dr. have a cancellation list? if so, have you been put on it? might another Dr. like your GP be able to get the specialist to get you in sooner or refer you elsewhere?

[loosebones]

fi, do you mind if I ask how much you weigh?

The whole situation is ridiculous. If I were you I would ring Prof A's secretary anyway and get them to book you in asap

[Fiona-Jane]

at the moment i weigh 57.2kg but weighed 63kg on 5th jan. i weigh more than i 'should' do at the moment (doctor said it was something to do with the amount of muscle i have) but still in my size 8 clothes like i always have!


if i havent heard from the appointment people by mid week i'm gonna give his secretary a call.

I still have some excess weight on me so i'm ok for a month or so, i'm just concerned how long it'll be before it gets sorted as the gastro guys aren't miracle workers so i doubt they can wave a magic wand and cure me there and then.... and i'm going to sicily for a wedding and didnt wanna have to take loads of ensure with me as it'll be problematic getting them through customs!

fi

[Fiona-Jane]

crisis over- central booking have agreed that i cant wait till august for my appointment and have worked some magic and given me an appointment on the 1st April (thats only a few days later than it would have been if they hadnt needed to reschedule it) yaaaay!

right, now i need to convince my belly that it wants some dinner- it's seriously upset today!

fi xx

[Lindsly]

that still sounds too long, but good to hear the date is MUCH improved!

[gila]

does anyone know whether prof aziz also tests/looks for Eosinophilic Disorders?
xxg

[Itigo]

Hi

I have posted on the Gallbladder problems thread previously

viewtopic.php?f=4&t=7143&start=30

but now I thought I'd post here. Having had my gallbladder out at the end of Feb, I have since had a bile leak, an ERCP to fit a stent, another ERCP to remove the stent after 3 weeks (early - should stay in for 4-6) due to severe nausea and vomiting - it was thought the stent was causing the problem. I was fine for about 4 days after the last ERCP but since the weekend the nausea has started again. It starts about an hour after I eat anything and sometimes I have to go to the bathroom to retch (which is better than it was as I was actually being sick when the stent was still in.) I am eating next to nothing and it's all low fat and healthy. I do get hungry after a certain amount of time but my appetite is greatly affected too. I feel quite full, even after small meals but I guess this is because I have been eating so little.

I have been getting a niggly ache in my right side which is puzzling, and think I woke up with heartburn type pain last night but it was obviously not too bad as I fell asleep again!

I was just wondering if anyone else had experienced any nausea after having their gallbladder out? Or whether the trauma of the bile leak could set off gastroparesis? It's nearly 5 weeks on now.

While it's good that I'm losing lots of weight, I want to enjoy food again, especially over the holiday............

Am phoning my gastro in the morning but I'm getting more and more worried about what is wrong, as are my family.

[Itigo]

I have now been taking Domperidone and Metaclopramide for about 5 days and there's little improvement. I am still on mega bland foods. If I try to eat anything else I feel SO sick/retch. The pain is still there on and off.

Will take the tablets and a repeat (about 16 days in total) to see if it dies down. My gastro thinks it's because my digestive system has had so much trauma recently it needs time to settle.

Just thought I'd update.........

Itigo x

[Stone]

I found cyclizine very good for nausea, they might try that? It made me incredibly drowsy though so it only really worked in the evenings and overnight!

Domperidone's one of the 'try this first' type drugs - it can work wonderfully or not have much effect, depending on why you're feeling sick and how you react to it. My mum used to prescribe it to a confused elderly lady who referred to them as her Champagne pills, after some thought they realised she thought it was Dom Perignon

Stone
[edit: whoops, it's cyclizine]

[sheppeyescapee]

I've had cyclazine or however you spell it for nausea before. I was on it for about 2 years under my old GP

[Itigo]

Thanks for the advice about Cyclizine and Domperidone. We refer to my Motilium as Dom Perignon too!! ha ha.

Hopefully, if I still have the nausea in a couple of weeks, my gastro will investigate further. Just in case my liver isn't happy. It's another of those 'trust you to get this many complications' situation for my hubby....My physio said much the same thing yesterday too. Glad I exasperate people so much!

They can try feeling for a while if they like, it's no fun!

[roqchiq]

We refer to my Motilium as Dom Perignon too!!

Me too!

I have a practical question about my follow up appointment next month as I'm trying to sort out train tickets at the moment.

Does the clinic always run late? I had an initial consult back in Feb and they were running about an hour behind, despite mine being one of the first appointments. This time I think I'm last on the list (requested this as I'm coming from Birmingham and didn't want the hassle of staying over the night before) so goodness knows when I'll be seen!

At the moment the train (plus connections from Euston) I'm planning to catch will get me to St Barts at my appointment time, but that's assuming they're all running to time. I'd normally get one that got me there a bit earlier but am loathe to get up much earlier than is necessary especially if I'm going to be hanging around for ages the other end.

Does anyone have any advice?

[Fiona-Jane]

Hiya,

from my experience their clinic usually runs late, although if you get an appointment early in the day the over-running is not too bad, i assume there's a cumulative effect!

i'd take the train that gets you to the appointment not too early, and maybe get a contact number for st barts hospital so you can contact the outpatients department if you are likely to be late- it's likely you'll have to wait for the appointment anyway.

the longest i've had to wait is 4 hours when my appointment was supposed to be just after lunch...... so be warned and take a book!

fi xx