St Bart's Gastro / gastroparesis

[lil_miffy]

Thankyou Jo thats really reassuring.
I guess im at the stage where im wondering if im ever going to get off the peristeen or if i will be even worse in the future. my mum has a stoma for her crohns and that is my worst nightmare.
cx

[evenwen]

Heya Miffy,

I just wanted to reassure you that you aren't alone with the not tolerating food until late in the day, or the "eating disorder". I described both of these in my amazingly long background history when I went to see Prof Aziz and he wasn't surprised at all.

I associated eating with feeling sick and ended up having long periods of what I thought were bulimia and anorexia where my system had backed up and I was either bingeing to push food through or not hungry because I was so full. Laxatives etc were no good because, as you mentioned, they don't get through until its too late and then the results are nastily explosive.

I don't feel hungry until late on,( I don't know if this is something like exercise being easier in the evening with autonomic dysfunction?) but I can happily say that I can get up and after an hour tolerate toast. That is due to having had all the nasty stuff in my guts killed off and being replaced with friendly bacteria.

My problems hadn't escalated to the extent of yours, although I'd had to do a lot of very gross things to help myself out (and still do on occasion) I really hope you get some answers quickly. As I said in my original post- one of the best things that happened was being told I hadn't had eating disorders and wasn't "mad" but it is ALL part of my HMS/EDS. You are very strong mentally to be dealing with things day to day. Best of luck with fast appointment times x

ps- I had a couple of stays with the hospital hotel service (may be worth enquiring if you can do this considering length of journey) and lots in homes of friends in London. I turn to a wibbly jelly after being shaken in transport, not fit to talk let alone be prodded!

[loosebones]

I'm being re-referred and have an appointment on 24th Feb. Here's to some answers

[Sue New]

Hi Evenwen,

I see you stayed in the hospital hotel when you had some of your tests. I really wish I had thought of that, as I have recently had a few tests there and had to keep going backwards and forwards in the hospital transport and it was a nightmare. The worst was the ph Impedenece test where I had to have the tube down my nose and into my stomach for 24 hours. I really didn't tolerate the tube very well and it made me sick and gag a lot . They ended up having to take me home in a High Dependency Ambulance - it would have been much nicer to either stay in hospital or their local hotel overnight :roll

Good luck with the re-referral Carla - and Miffy, I hope you get seen soon too.

[nemonie]

I just wanted to reassure you that you aren't alone with the not tolerating food until late in the day.... I described both of these in my amazingly long background history when I went to see Prof Aziz and he wasn't surprised at all.......

I don't feel hungry until late on,( I don't know if this is something like exercise being easier in the evening with autonomic dysfunction?) but I can happily say that I can get up and after an hour tolerate toast.

Wow, that sounds very familiar. I find it very hard to eat early in the day and will often get severe nausea if I try to eat within an hour or two of getting up. I usually don't eat anything until much later on, because I'm just not hungry. Another thing to mention at my autonomic appointment.

[lil_miffy]

My gi issues have got really bad the past couple of weeks and Im really worried now.

My irrigation isnt working hardly now. I have to irrigate twice just to get things moving and even that isnt producing much output.
I havnet felt pain or sensation in my bowel for quite a while becuase of nerve damage but im getting pain now which means something must be really wrong. the pain is at the bottom corners (on that actual bends of the corners) and the top left corner just under the rib. the pain doesnt move from these areas but the areas have gotten larger. Its a burning feelinng and the pain uner the rib also feels like a big lump digging into the rib but my gp had a good feel and said there was no blockages.

When i press on the area the pain eases a bit but then i hear and feel lots of fizzy gurgling sounds and sensations in that area.

My stomach is my main concern. I have no appetite at all now. I feel full constantly like i have eaten a huge meal. Im trying to eat a little often but just managing a couple of small bites. when i swallow it feels likea huge lump of food and takes ages to move down my throat. I feel like i have a lump of food stuck at the top of my throat constantly that i cant swallow down and also a similar lump just above my stomach as if it cant get into my stomach. I feel really nausaus but when i do run to the loo to be sick im just retching with nothing coming up.
Theres no heartburn or acid.

I thought maybe the topirimate might have cuased the appetite issue so i reduced down slowly and came off it for 2 weeks but it made no differene. Dr also said that the dose i was on was to low to cause the problems.

My gp wont refer mt to prof aziz even tho I spoke to prof aziz at the residential and he said to get reffered to him for investigation. I found out today that my refferal to the rheumatologist at gateshead who is taking over from prof bird for my care didnt go through so that has got faxed through today but he still needs to convince my gp to refer me to prof aziz. Im loosing weight fast and feel so weak. I look so pale and ill and havnet felt this ill in a long time. My gp just doesnt seem to care and seems to think im just choosing not to eat and gave me a lecture about mind over matter. He has gone back to treating me like im a hyperchondriac and isnt taking any notice of any of the things prof bird has told him.

My bowel is the way it is becuase i was ignored for years. i dont want to end up with even more gi issues becuase im having to wait eagain and being ignored again. im at the point of looking into how much it costs to see prof aziz privatly even though i rprobably couldnt afford it.

[sheppeyescapee]

Would it be possible to see another GP?

[lil_miffy]

he is the head gp at the surgey so if he wont refer me noone else will. even the really nice lady dr wouldnt reer me to prof aziz. I found out today that my refferal to the new rheumy hadnt gone through so its been faxed today and his secretary said i should only have to wait a few weeks as its been marked urgent.
I may be lucky and he may be able to refer me directly.
Once I get rehoused Im moving gp anyway unless i move somewhere close to where i am now.

[Rosie]

Hi lil-miffy

Maybe approach PALS to ask why they won't refer you to see the Prof? Probably worth a try.

Rosie

[lil_miffy]

I live in the north east and they wont refer me to a dr in london when they have GI drs here who have already said 'gi issues are part of eds, live with it'.The gi dr where i live wouldnt even perscribe the irrigation and was happy for me to remain incontinent.
Iv been reffered to alot of different drs in the last year and my irrigation is expensive treatment so i think they are getting a bit concenred over how much im costing them. My gp admits he doesnt know a thing about eds and with my history of depression (and misdiagnosis of bipolar) its easy for them to assume its not a serious issue, especially when the local GI dismissed my bowel issues until prof bird stepped in.
They just keep saying that I have to just wait till i see the rheumy and let him deal with any eds stuff.
Thankfully i now know that i should see him within the next few weeks. He himself maybe able to refer me directly to prof aziz or may even contact him just for advice while i wait for an appointment wth aziz.
I could go to PALS but the last thing i need is a peeved off gp that i still need to work with as much as i want to complain. Up till now he has been really good and not refused anything so i dont want to ruin what has been a good relationship till now becuase compared to alot of people here i have an amazing gp. (except for this month)
Im sure the rheumy at gateshead will gt me refferd to prof ziz quickly and his secretary said I should get an appointment very quicly.

[lil_miffy]

Iv been trying to get my gp to refer me to prof aziz since september when i met him at the hmsa resi. My new rheumy has written to my gp and told him i need to be reffered for my gi issues.
I decided to see the lady gp i saw once instead of my usual gp as my usual one was not very nice last time. she was loverly and had no problem reffering me but then discovered that the PCT could refuse the refferal and stipulate that if an alternative service is available in my PCT i have to be reffered there.
There is a specialist GI consultant at one of the hospitals in my pct who does more complex gi surgery who would classify as the 'local alternative service' to prof bird. I have a feeling that this consultant is the GI consultant I saw last year who discharged me when he realised it was eds cuasing my bowel problems.
even if it isnt him i really do not want to be seen in my pct by anyone.

i have grown up on my PCT. i have been going to gp after gp about my bowel issues since i was a small child and been ignored time after time. when i finally got reffered to hospital for investigation it was too late, when my bowel had finally started to pack in and i was doubly incontinent. the specialist looked for crohns becuase of mum having it, when i didnt have that (which my rheumy still thinks i do have and wants a 2nd opinion on the crohns tests) he decided i had ibs caused by depression becuase of my bipolar label which is a misdiagnosis. when he realised that i didnt have ibs and that it was eds cuasing my problems he discharged me, told me to live with it and wouldnt even perscribe the irrigation system that my continence nurse had been asking him to.

Its becuase of my local pct and the drs in it that my eds was left to get as bad as it is esepcially my gi issues. I now have upper gi symptoms to the point where i am barely eating, i have lost 2 stone in 3 months and my throat and oesphogus is starting to 'clunk', i cant swallow properly.

my irrigation no longer works. when i started using it i would use 1 litre of water to fill my bowel to flush it out. now i can only get 300-400ml max in so my bowel has started to collapse where it is not letting the water past. when i started using the irrigation my stools would be water, now they are very solid and difficult to pass which is not what irrigation should be like. when i spoke to prof aziz at the residential he said that i may need a port put in my abdomen to pt a tube in to irrigate down through my bowel instead of up through my bottom. if that doesnt work or my bowel is collapsing then i could need to have my bowel removed and a stoma put in instead. i have no idea what my upper gi problems will need but i had an endoscopy this week that showed inflamation in my stomach but nothing else which i assume means that my upper gi is to do with the muscles getting too lazy the same as my lower gi system.

My gp rang today to say that she has found out that if she can find prof aziz in the choose and book system i can be reffered if not i have to be seen in my pct.
I need his hospital name, the department hes in, his speciality, anything that can help us find him in the choose and book system. but if he does not accept refferals through the choose and book then il have to appeal of go private. i have no idea how much that would cost with all the tests and possible treatment!!!

has anyone else had to appeal a refusal to be reffered?
PALS in my town are beyond useless. i tried them when i lost my sight with the medication. they just never got back in touch with me for ages and when i finally did get hold of them they were useless and just gave me the same info that i could find online.

my local pct have let me down too many times. i went blind and nearly died becuase of a dr in my pct overdosing me on medication, i was diagnosed and then left with no treatment for my eds at 27yrs and my gi issues -and need to see prof aziz- is becuase of my pct failing to take my gi issues seriuosly my whole life.

can anyone help me prepare for appeal if i need to?
for now can anyone provide me with th information i need to find prof aziz through the choose and book system.

i am so devastated by this. my gi issues are my worst part of eds and cuased the most disruption to my life. this recent hurdle has knocked the wind out of me and im now loosing my will to fight and feel like what is the point with it all.

[nemonie]

Hi Honey,

I posted the info on one of your wall posts on facebook, with weblinks to the pages at St barts included. Your PCT sucks.

[loosebones]

Really struggling with my gi issues at the moment and I don't know what's triggered it but I'm feeling nauseous all the time and am getting waves where vomit comes into my mouth and I just swallow as I don't want to throw up in front of people. My stomach is also being really unpredictable and wont go to the loo for days, then I'll have to take 3 glasses of movicol and half a bottle of senna in order to be able to do anything but then nothing much comes out. I'm not seeing Prof A until the end of Feb but I was wondering if anyone has any ideas or suggestions. My GP doesn't know what to do.

[lil_miffy]

loosebones if you dont already why dont you try taking the movical every day rather than waiting till you get bunged up?

I have to take movical every day and its much easier to take //// (one glass full) in the morning than trying to down 1 litre once a week.
If you are struggling to drink the movical add orange squash to it. Its horrible to drink on its own but if you add orange squash (or other dilute juice) it makes it just taste like a fizzy drink. I measuer 100ml water and 25ml of squash per sachet.

Drinking it every day rather than when you get bunged up means that its filtering through easily and should keep you more regular and stop you getting blocked. It could be blockages and bulid up that are cuasing you to be sick. If the bowel becomes blocked or too full of stools then it can cuase nausea and vomiting as the stomach has nowhere to empty too.

Also drinking large doses of movical every few days as appose to smaller doses everyday will make you vomit more.

You need to make sure you are drinking lots of water too when you are on movical beucase it is s*d based you will dehydrate. This will make you feel more sickly. Drinking a glass of water before and after yoru movical will also get more water passed your stomach into your bowel to make the stools softer.

Try not to rely on senna too much becuase that can make the muscles lazy and with eds/hms the bowel becomes problematic becuase of muscle weakness so you dont want to add to that.

If you are having problems pushing your stools out you could try mini enemas like microlax. these are little tubes that you squirt into your bottom and the solution aggrevates the muscles to contract to help you push. Again you dont want to rely on these but they can help if you use them on bad days if having softer stools isnt enough and they will be better for your overall bowel than relying on senna.

My bowel is badly affected now but when it was much better I managed really well on movical and microlax for quite a while. I also found that cutting out fat, drinking less caffeine and drinking lots of water also helped.

Try rennies (the dual actions ones are good) for the vomiting as it could be acid reflux making you vmit into your mouth like that too.

mod edit - dosage info removed

[lil_miffy]

My gp has changed his mind and is writing to the PCT to request funding to refer me to Prof Aziz!
Finally!
However it can take some months apparantly but its one step closer.

I found out that my official 'label' on my notes is 'hypermobility syndrome with gastroentesinal complications' (from my rheumy) so I thnk this has made my gp take things more seriously.

I had an endoscopy recently that showed inflammation throughout my stomach and my endocrinologist said the biposy they took showed 'something significant' but he wouldnt say what it was and I have to wait till i see the GI dr next month about it. Im really hoping its not Crohns as mum has that and even though my last GI dr (the useless one) ruled it out my rheumy wants a 2nd opinion and still thinks i may have it.

My bowel is funcitoning barely now. My irrigation is prdocuing very little output. its mainly just the water that comes back out, so things are blocked very high up and not moving. Even the movical isnt shifting things now. Its also very painful inside thorughout my bowel when I do irrigate and im getting less and less water pumped through each time.
Eating wise im managing a bag of crisps a day and trying really hard to get at least 1 complan drink down but it takse at least an hour. My nuasea is really bad but im not able to vomit anymore so when my stomach can't tolerate the complan (sometimes even tea or even water) i get so nuaseaus but unable to vomit which is awful.
The pain in my upper bowel is constant now so im kinda getting used to it which is nice in a odd way. I dont get the fizzy feeling anymore just the burning and pushing feeling. Im also getting the same feeling in the right verticle part of my bowel now but that comes and goes.

Hoping that the GI dr i see about my endoscopy results might be able to start helping me while I wait to see prof Aziz or at least refer me to a dietician or something so I can start getting food in me of some kind. Iv lost over 2stone now since before christmas and starting to look gaunt and really pale.