Hello again
Comments
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Bless you
Your not well and asking how i am @rubin16 .
I really really really want you to get the help you need .
I really hope you are better soon .
Its not nice being as poorly as you are .
The doctors need to act a bit more swiftly to get you better .
Wishing you a swift recovery .
Sending loads of well wishes your way
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Im still feeling teary @rubin16 .
Its just gonna take time for me to get my head straight .
All i wish is for u to be better soon
Everyone will be wishing you well and rooting for a quick recovery for you .
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Thanks, My care-cordinator is coming tomorrow to find out whats happening. So hopefully I get a better idea as I don't process information well and will freak out/ have a meltdown.
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Hope that all goes well @rubin16 .
We are all rooting for you and hoping for a very good outcome
Hopefully people will be gentle with you so stress isnt caused as you already have alot to deal with
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We'll be rooting for you too, yeah unfortunately healing is a slow process but we'll be here supporting you every step of the way. You've got this.
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Thank you @rubin16 .
Im not sure i deserve your kindness but i will accept it .
I wish for brighter and healthier day ahead for you
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I hope this all settles down soon Rubin, it must be so dreadful and exhausting .
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Hope you manage some sleep tonight @rubin16
Keep us all updated
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@rubin16 Just seen this thread and sorry you are going through all this. A few people with Crohns I know from another forum are on biologics like infliximab and others, which have sorted them out.
You should be getting better looked after too in hospital. Those nutritional drinks they give you, there is a watery one and a thicker one, the thicker one in better. Think it is more like a thin yogurt.
There are meal substitute drinks like Complan (needs mixing), HUEL etc that could be brought in if your stomach could handle them.
If you feel you could handle a sandwich, there will be some in a fridge in your ward.
Hope they get you better, I know it isn't a quick process reading about the people from the other forum I frequent.
Get well soon!
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Hi, thanks for your message,
I'm on biologics, but I don't really respond well on them. I've triad adalimumab which my body built up antibodies too so won't work, I tried infliximab which I had a severe allergic reaction too and it stopped me breathing, and now i'm on Ustekinumab which causes my Liver ALT to raise.
I've been asking for a dietician since I came in, as they are the only ones who can put you on and try different substitutes, but I've not seen one yet. Its been 13 days now without food, each time I try to eat, even if I just take a few sips of either soup or a fortisip I feel ill for hours and won't stop being sick even if I have antisickness beforehand. Each day I try though and am sick.
I had psysio come assess me yesterday, and said theres nothing wrong with my walking, and i'm strong its just the pain im in, she was quite angry and basically went to "speak/yell" at the doctor who then has supposedly put me on a longer lasting pain med, but i'm still yet to receive it.
I don't know what the answer is, but i'm scared something is going to happen to me, I don't know how long a person can go without food. I came in here quite chunky now i've gone skinny and lost all my fat, my clothes don't even fit anymore.
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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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