Hello again
Comments
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Morning @Rubin16, I'm so very sorry for what you're going through, I really feel for you. The last 24 hours sound very, very difficult 😪. I hope your Care Coordinator today will be able to really help.
I can understand you feeling scared, especially not eating for 13 days.
I'm not trying to 'diagnose' saying this but I have 7 diagnoses of 'intestinal' problems (not Crohns). I'll be brief! The main/most serious one, is a type of pancreatic failure (EPI) stops me absorbing and digesting food. I'm on CREON (a pancreatic enzyme) to help me absorb etc. I'm under a gastroenterologist and dietetics and on one small meal a day, to go up to 3 but I cannot yet due to continuous severe nausea and occasional vomiting. That's tested for via a very simple faecal test - elastase.
What helps me is low fat and 0 fat, Greek Yoghurt, only a tablespoon though.
I'm on highly potent mineral and vitamin supplements. I've likely had this (undiagnosed) for c 3 years. Been under 3 consultants.
My point being, my current consultant has thought outside the box where previous ones did not and got to a point where it can be identified, and managed, just takes some time.
I hope your consultant is considering all of your symptoms carefully and further tests, especially because of the vomiting and being unable to eat; and that you get the pain relief you need.
Thinking of you and keeping everything possible crossed for you for today with your Care Coordinator. Take good care.
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Thanks for this, i'll try mentioning it to my doctor see what they say.
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I'm feeling abit more hopeful today, had a different consultant see me this morning. He talked much better and not so abrupt. He said try this tablet for now (New one I was put on last night) and they'll catch up with me again on monday. He said not to worry if this doesn't work there is other options. He also put me on a new nutritional drink to try thats not so rough or sweet. (insure compact or something I think it's called).
I did try to eat again today with no luck, they gave me anti-sickness 45mins before soup. So atleast the soup was hot this time, however 15mins later I was being sick again, and ended up throwing up all over myself and the bed and they had to give me more anti-sickness. So I don't think I can have soup.
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It's no problem @rubin16 , even as a former nurse I was shocked to know someone could have quite so many diagnoses of the gut! I very much hope you have not. I've found even one thing can complicate something else, but there are usually answers that can manage it, with a bit of time. I'm glad I pursued to a 3rd opinion as the first two consultants said it's IBS which I knew it was not.
I have the twisty thing you mentioned earlier but not for the same reason (no surgery) but tortuosity (redundant bowel). Who even knew something like that even existed! I hope you manage to get some rest in your day, it can be hard to though in hospital, especially when you can't eat, are in pain and are waiting for answers. Thinking of you as many are here too.
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Fingers crossed @rubin16 you get the help you need soon .
Sending lots of well wishes your way
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Thanks, yeah I am so tired. I only sleep for about 4 hours at night before pain wakes me up and then i'm awake again wanting painkillers. I try to cat nap too during the day but everytime I just about nodded off, someone wakes me again to do something.
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Thankyou, sending lots of best wishes back to you. Take care
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You can go at least a month without food but you need water. It should not get to that, the dietician should be with you, keep asking where is he/she? Think positive, you'll be better off without that excess weight anyway.... You'll come out of that hospital slim, fit and healthy.... Keep having a walk around too if you can manage it, keeps your muscles going! Nothing is going to happen to you, if concerned speak to the doctor assigned to you. Try and relax as getting stressy will not help your situation.... I'll be following this thread so keep posting. Get well soon!
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Thanks, i'm feeling more positive today than yesterday.
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Good! You have a phone or tablet, sign in to ITVX and watch some films or something, take your mind off your current situation for a while. Easy to sign in, email address, password and a couple of questions. Sure the Wi-Fi in hospital will handle it! I'm on a basic internet package at home and it does not buffer when I'm watching the odd programme.
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Your in everyones thought @rubin16
Get well soon
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I have my laptop with me and on wifi, which is good. looks like i've set up an office in my room haha.
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Good. You have your own room I gather, they are great. I have had my own room a few times! Get a film on later and I gather it will be tea time shortly, get some food into you if you can!
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I'm always guarenteed to have my own room, I've never had different due to my complex needs.
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Good! Hope it's a warm room too, but you can adjust the heating to your liking.which is good. Cold up North and very windy, don't know if it is the same where you are but keep warm!
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Its really warm during the day but the room gets cold at night. but I like it like that, I sleep better when its cold so I wrap up in the sheets. My bedroom at home is basically a fridge.
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As long as it is OK for you, you don't want to be cold currently. Has the dietician been yet? This person is who you need to see! How you feeling currently? Get that film on, there are a few James Bond films and always a good watch even if you have seen them!
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Apprentley Dietician is coming tomorrow, I just took a few sips of that new nutritional drink they wanted me to try (Ensure Compact). 10-15mins later I was being sick again and had to have more anti-sickness and basically sick to the point my stomach is empty again. I don't know what the next option is but so far my body is refusing everything its given.
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@rubin16 Hope you recover quickly, it must be so scary going through what you’re experiencing. Sending you lots of positive vibes. Keep us all updated on your recovery.
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Thanks for your message, Yeah its scary, I'm just sick of being ill all the time and being in hospitals. I've been in hospital pretty much twice every year since I was 18. Its so bad that the staff know me well who've worked here over the years, I'm actually surprised they don't start charging me rent.
The even more annoying thing, its never a quick fix and i'm always in for like a month each time. I've never been able to have a normal life, finish studies or ever hold a job, and I hate being dependant on benefits but I just got to keep the fight up.
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