wannabeminime
Moderator
Lovely pic scooter, sorry you're having problems again, sigh. ((hugs ))
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Leaking like the Titanic..
- Thread starter scooter81
- Start date
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- leak sleeve gastrectomy stent
scooter81
Walking Disaster Area
Went to see team today. They think my probs are one of the following..
1) Caused by an oesophagial stricture
2) My stomach has shrank
3) There's a problem with the plumbing causing pyshological prob
4) My stomach has a kink in it
5) Some other anomaly caused by previous treatment and/or scar tissue
Interresting as with 5) I had 5 months of being unable to swallow saliva as stomach lining had grown through the stents and was in my throat closing off my airways and damaged the sphincter (?)
I've been given an "urgent" endoscopy form. Handed it in today to be told I'd be booked in within the next 4-6 weeks.
I'm now on a daily course of dom peridone, metroclopermide and buscopan 4d times a day every day for 4 weeks. Already been on them for 3 months. All I want to do is cry. Pure utter frustration. October, november and December I was told that this is normal, stop trying to feed your body it doesn't need it! Because it is normal to eat half chicken wing, spoon carrots and green beans in an entire week..
January 4th I was told its delayed teething probs now I'm being lead to believe its "not ok" and I'm angry. Moreso with myself for listening to their drivvel and believing me after all the lies and crap.
Coincidental that today they also couldn't find my notes - I have a temporary file because its "misplaced". I'm trying not to worry and stress and adopt the philosophy of don't panic until its time to. I'm tired, I ache. I'm now feeling impending doom and teying to be positive. Kept this off other social network sites as have work friends etc on there and don't want them knowing - have enough trouble there at the moment. Had a bit of a cry and feeling better. Just one thing after another and the not knowing is the painful part. I know I'm not alone but can't decide if that's a good thing or not. Don't want another 12 months of doody for my friends, family and loved ones. They had enough already. The sooner I get this done the better
1) Caused by an oesophagial stricture
2) My stomach has shrank
3) There's a problem with the plumbing causing pyshological prob
4) My stomach has a kink in it
5) Some other anomaly caused by previous treatment and/or scar tissue
Interresting as with 5) I had 5 months of being unable to swallow saliva as stomach lining had grown through the stents and was in my throat closing off my airways and damaged the sphincter (?)
I've been given an "urgent" endoscopy form. Handed it in today to be told I'd be booked in within the next 4-6 weeks.
I'm now on a daily course of dom peridone, metroclopermide and buscopan 4d times a day every day for 4 weeks. Already been on them for 3 months. All I want to do is cry. Pure utter frustration. October, november and December I was told that this is normal, stop trying to feed your body it doesn't need it! Because it is normal to eat half chicken wing, spoon carrots and green beans in an entire week..
January 4th I was told its delayed teething probs now I'm being lead to believe its "not ok" and I'm angry. Moreso with myself for listening to their drivvel and believing me after all the lies and crap.
Coincidental that today they also couldn't find my notes - I have a temporary file because its "misplaced". I'm trying not to worry and stress and adopt the philosophy of don't panic until its time to. I'm tired, I ache. I'm now feeling impending doom and teying to be positive. Kept this off other social network sites as have work friends etc on there and don't want them knowing - have enough trouble there at the moment. Had a bit of a cry and feeling better. Just one thing after another and the not knowing is the painful part. I know I'm not alone but can't decide if that's a good thing or not. Don't want another 12 months of doody for my friends, family and loved ones. They had enough already. The sooner I get this done the better
angiemason
New Member
Bloody he'll what a rubbish time you're still having 
it's time they gave you a good old fashioned MOT all the works everything you can't keep going on like this and a chicken wing won't help anything , are they having crossed wires between themselves one person thinks this and one that but they need to talk to each other they surely can't leave you like this. The photos are lovely but really what's the point looking great when you feel crap try not to get despondent and keep your chin up honey xxx take care and were all behind you if just in spirit and thoughts xx
it's time they gave you a good old fashioned MOT all the works everything you can't keep going on like this and a chicken wing won't help anything , are they having crossed wires between themselves one person thinks this and one that but they need to talk to each other they surely can't leave you like this. The photos are lovely but really what's the point looking great when you feel crap try not to get despondent and keep your chin up honey xxx take care and were all behind you if just in spirit and thoughts xx
scooter81
Walking Disaster Area
I have no clue. I've made the decision to go right back to the start and have put myself on fluid only diet see if things pick up from there. They asked when I eat if things are getting stuck. As far as I'm aware they're not? Last night I stayed at my parents and managed to eat 5 tablespoons of very mild home made curry and was fine. This was eaten around 5pm, and only thing I'd eaten all day. Around half 8 I got hungry tried a little watered down soup and one mouthful down was followed by an hour of being sick, sweats, shakes and dizzyness.
I never seem to get a straight answer and I very *****ily demanded one yesterday to be told could be any of the prior. Will find out more once had endoscopy. So its a case of eat the antisickness.. Sometimes they're back right away but keep trying.. Keep battling on until then. I had that many bloody endoscopies they should be able to drop a cow down my throat and it'll fit down there no problem.
New day.. Better mood.. Trying not to stress.. Just deal with one dollop of the brown stuff at a time!
I never seem to get a straight answer and I very *****ily demanded one yesterday to be told could be any of the prior. Will find out more once had endoscopy. So its a case of eat the antisickness.. Sometimes they're back right away but keep trying.. Keep battling on until then. I had that many bloody endoscopies they should be able to drop a cow down my throat and it'll fit down there no problem.
New day.. Better mood.. Trying not to stress.. Just deal with one dollop of the brown stuff at a time!
Butterfly38
New Member
What a horrendous time you're having..... How the hell they expect you to live on such minute amount of food is ridiculous!!! Sounds like they messed up big time somewhere along the line and rather than admit it and help you they are just glossing over it at your expense!!!! I do hope you get some of the answers and help you need scooter, you must be going out of your mind x
femfrankie
Shrinking For Sophie
You certainly have been through the mill scooter and its no wonder that you are feeling so angry at the moment. It's bad enough that you are going through it all but when you start taking your loved ones through it as well it makes it even more appalling. Chin up hun, you can do this one more time and let's hope that they can identify what the problem is and damn well fix it properly this time! :hug99: x
and its no wonder that you are feeling so angry at the moment. It's bad enough that you are going through it all but when you start taking your loved ones through it as well it makes it even more appalling. Chin up hun, you can do this one more time and let's hope that they can identify what the problem is and damn well fix it properly this time! :hug99: xwannabeminime
Moderator
Fingers crossed you get the endoscopy appt really soon so that you can have some reassurance. And for your poor family too. It totally sucks, the whole thing, from beginning to now, and i just dont know what to say. :sigh: We're here for you though Scooter, come and moan as much as you want/need xxx
:sigh: We're here for you though Scooter, come and moan as much as you want/need xxx
scooter81
Walking Disaster Area
Better eating day today - managed 1/4 slice cheese on toast (ww bread), small tuna steak (45g). And a little chicken stir fry and so far so good. Feel like I've over stuffed though.
Need to have talks at work about the situation, make them aware of impending appointment and that something is potentially wrong for insurance purposes. Hate to think how this will go as already being awkward but need to communicate openly and honestly, even if some don't.
My family - kind of lied well didn't volounteer all info. Did however advise need endoscopy to check inside stomach etc bc not eating as should be and they want to check it all. So they're aware of it but not stressing. I'm kinda living with that denial and still trying to get down what I can. Take each day as it comes, keeping my food diary see if there's a pattern with what I eat. I know its rare I can deal with carbs so tend not to eat them. Today I fancied that cheese on toast and it was amazing. Very lush!
I know u r all with me and I'm grateful for that but surely its got to totally end at some point hasn't it? I hope so. I have a bit more clarity, energy and hope today. Had my diabetic screening, and that was good news - my eye sight has improved! Now only -7.50 instead of -10.25 another positive of last 12 months.. Push on we shall..
Need to have talks at work about the situation, make them aware of impending appointment and that something is potentially wrong for insurance purposes. Hate to think how this will go as already being awkward but need to communicate openly and honestly, even if some don't.
My family - kind of lied well didn't volounteer all info. Did however advise need endoscopy to check inside stomach etc bc not eating as should be and they want to check it all. So they're aware of it but not stressing. I'm kinda living with that denial and still trying to get down what I can. Take each day as it comes, keeping my food diary see if there's a pattern with what I eat. I know its rare I can deal with carbs so tend not to eat them. Today I fancied that cheese on toast and it was amazing. Very lush!
I know u r all with me and I'm grateful for that but surely its got to totally end at some point hasn't it? I hope so. I have a bit more clarity, energy and hope today. Had my diabetic screening, and that was good news - my eye sight has improved! Now only -7.50 instead of -10.25 another positive of last 12 months.. Push on we shall..
scooter81
Walking Disaster Area
thanks x My baby Mr Piggle (the dog) came home with me again today - hes been at my moms as not really had the energy to deal with him (hes a hyperactive jackrussel-corgi cross) and with snow and ice my parents thought it safer for him to run riot round their garden instead of me trying to walk him and freeze.
We get home, and hes all excited jumped over everything, knocked things over but alls good.. went for a walk to Sainsburys garage as despite shopping I forgot skimmed milk. Nearest shop to me is 300 yards but only sell semi skimmed or pasturised. So the pooch and I grabbed backpack and went on the 2 mile treck to Sainsburys. Got the milk from the Garage and I just felt like running, so run we did. not constant all the way, but a majority of the way back. A mixture of brisk walk, jog, run.. I must say that my Mr Piggle looked shocked! Weve never been able to do this, and I felt bad that he wanted to move his stumpy legs faster but mine wouldnt go!
Not ideal running in jeans and trainers as movement restricted but all the same we did it Get home, both panting and sweating like nuts, downed loads of water and feel pretty proud of myself. I havnt ran like that for years! Ive been to the gym, and jogged steadily but never ran with all Ive got like I did earlier and I honestly dont know whos more tired and shocked.. Mr Piggle for dragging me, or me for having to move my legs faster so as not to fall over! All in All, a good day, and Im feeling proud and pretty dam good
Dunno about a case study, but Im in the throws of doccumenting and writing everything thats happened down. Maybe it will help clear the mind and a few issues?
We get home, and hes all excited jumped over everything, knocked things over but alls good.. went for a walk to Sainsburys garage as despite shopping I forgot skimmed milk. Nearest shop to me is 300 yards but only sell semi skimmed or pasturised. So the pooch and I grabbed backpack and went on the 2 mile treck to Sainsburys. Got the milk from the Garage and I just felt like running, so run we did. not constant all the way, but a majority of the way back. A mixture of brisk walk, jog, run.. I must say that my Mr Piggle looked shocked! Weve never been able to do this, and I felt bad that he wanted to move his stumpy legs faster but mine wouldnt go!
Not ideal running in jeans and trainers as movement restricted but all the same we did it
Get home, both panting and sweating like nuts, downed loads of water and feel pretty proud of myself. I havnt ran like that for years! Ive been to the gym, and jogged steadily but never ran with all Ive got like I did earlier and I honestly dont know whos more tired and shocked.. Mr Piggle for dragging me, or me for having to move my legs faster so as not to fall over! All in All, a good day, and Im feeling proud and pretty dam good Dunno about a case study, but Im in the throws of doccumenting and writing everything thats happened down. Maybe it will help clear the mind and a few issues?
scooter81
Walking Disaster Area
Yes I've taken legal advice and they've contacted the hospital about it. Could be why my file was MIA on friday? They have to give them so many days to respond etc.. However will be speaking to them tomorrow to advise of appointment on friday and see where we go from here. I just want an appology and fixing properly
shelleymarie
New Member
Bless you scooter, hope things start to get better for you soon, I really do. You deserve things to be better xx
sicknote
Member
Hiya :O)
Thanks for your inbox message, it really helped, reduced the speed and learnt how to burp the tube, relife! also leave flushing water on the side to warm up before i use it, as cold tap water was a gagging job for me lol xx I have Ended up with a ganulo or grulation something like that and its been bleeding out since yesterday, had swap today and on anti b's now x Getting out with my bag lol, thanks again for that, makes a real difference x i'm sorry to hear that your going through the mill, please dont take offense but can you not demand to see a differnet surgeon at a differnt hospital? they can't expect you to live like this anymore....you have had to endure far too much already!!! xx thinking of you xxxx
Thanks for your inbox message, it really helped, reduced the speed and learnt how to burp the tube, relife! also leave flushing water on the side to warm up before i use it, as cold tap water was a gagging job for me lol xx I have Ended up with a ganulo or grulation something like that and its been bleeding out since yesterday, had swap today and on anti b's now x Getting out with my bag lol, thanks again for that, makes a real difference x i'm sorry to hear that your going through the mill, please dont take offense but can you not demand to see a differnet surgeon at a differnt hospital? they can't expect you to live like this anymore....you have had to endure far too much already!!! xx thinking of you xxxx
scooter81
Walking Disaster Area
Hi my friend good to hear your getting out and about and also a member of the Dora the Explorer gang with your nifty backpack
Explored possible seeing other surgical team however enquiries not going well. Need to get refferal to them. My gp can't refer elsewhere and private won't touch me with barge pole as its someone elses work.
It can only get better just a matter of when. I'm glad to hear things are working better now and its working with you. Thinking of you and thankful for the smile you've given me today. BleSs u x
good to hear your getting out and about and also a member of the Dora the Explorer gang with your nifty backpack Explored possible seeing other surgical team however enquiries not going well. Need to get refferal to them. My gp can't refer elsewhere and private won't touch me with barge pole as its someone elses work.
It can only get better
just a matter of when. I'm glad to hear things are working better now and its working with you. Thinking of you and thankful for the smile you've given me today. BleSs u x
