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  • Strawberry1
    Strawberry1 Online Community Member, Scope Member Posts: 7,609 Championing

    I really hope you get that help you need Asap @rubin16

    Wishing you well soon

  • rubin16
    rubin16 Scope Member Posts: 1,244 Championing
    https://forum.scope.org.uk/discussion/comment/1085720#Comment_1085720

    Im debating rolling up the wallpaper and trying to smoke that haha

    @Strawberry1 were here for you, we all have our problems but knowing we have people there that care means you never have to face things alone. Facing things alone can be scary but united we can conquer anything.

  • Nightcity
    Nightcity Online Community Member Posts: 452 Empowering

    this sounds absolutely horrific @rubin16 You have every reason to rant.

    Hope you see some improvement in health and get more answers soon.

    I can't imagine much less appealing than a curry when you're ill!

  • Strawberry1
    Strawberry1 Online Community Member, Scope Member Posts: 7,609 Championing

    When i was in hospital they offered my the stop smoking stuff

    I wonder if they could offer you something similar @rubin16

    You dont have to stay stopped its just something that could get you through .

    Ive been quit over 3 months now

    Unfortunately im still using the inhalator at the moment feeling as I am @rubin16

    I should have stopped using it by now

    But im stressed etc

  • Strawberry1
    Strawberry1 Online Community Member, Scope Member Posts: 7,609 Championing

    Thank you for you support @rubin16

    You know at this present time i dont feel like i deserve any kindness at all .

    I am touched by the support given

    Even though i dont think i deserve it

    Hope you are so much better soon @rubin16

    Onwards and upwards for ya

  • Rachel_Scope
    Rachel_Scope Posts: 2,462 Scope Online Community Coordinator

    @rubin16 I'm sorry things are so difficult for you right now. The hospital staff should be looking after you properly and making sure you're getting some nutrition. It's appalling that the consultants are contradicting each other. Do they not have a meeting together to go through everything?

    Stay strong and speak up for yourself if you need something.

  • Anhedonia
    Anhedonia Online Community Member Posts: 56 Contributor
    https://forum.scope.org.uk/discussion/comment/1080564#Comment_1080564

    I love this message, we all just need to figure out our limits. I hope your day is more up than down today!

    @rubin16 that's so worrying! Ask for an assessment from SALT, I know speech and language therapist sounds like a weird choice, but they also do swallowing assessments and can help determine issues around the physical side of eating, rather than purely the gastro aspect. Do they have you on any drips or alternative source of energy? It's very difficult when you don't see the same person more than once. There should be someone named specifically for your care though, if you're getting no answers you could try contacting PALs.

    Are you keeping okay aside from that? Is the pain you're in from your stomach? Have they done any scans?

  • rubin16
    rubin16 Scope Member Posts: 1,244 Championing
    https://forum.scope.org.uk/discussion/comment/1085759#Comment_1085759

    I don't actually have an issue swallowing, its keeping things down me. As soon as anything hits my stomach I'm in agony and I feel really ill and end up being sick. i'm on anti sickness but that just stops me from being sick, the rooms still spinning like on the waves of the ocean and horrific pain. I've not been put on a drip, and my blood pressure is low 90/65

    I had 1 xray when I arrived in a&e since then consultants have been deciding for over a week what to do.

    Also another issue, becuase of my autism i'm not allowed to make my own decisions. I'm classed as vulnerable so they can veto decisions aslong as they discuss it with my care team. Which is scary.

  • Strawberry1
    Strawberry1 Online Community Member, Scope Member Posts: 7,609 Championing

    Thinking of you @rubin16

  • Strawberry1
    Strawberry1 Online Community Member, Scope Member Posts: 7,609 Championing

    Get well soon @rubin16

  • Anhedonia
    Anhedonia Online Community Member Posts: 56 Contributor
    https://forum.scope.org.uk/discussion/comment/1085792#Comment_1085792

    I am shocked they are not giving you anything at all, even a saline drip??? Oh rubin how awful for you, I'm so sorry. Do you know your care team? Are you able to get any clearer answers from them?

  • Catherine21
    Catherine21 Posts: 8,510 Championing

    Sorry to hear this rubin I wish you a speedy recovery

  • rubin16
    rubin16 Scope Member Posts: 1,244 Championing

    Okay finally I know whats happening, just managed to speak with a nice doctor. I'm waiting for some camera tests (up and down) and on waiting list. He said could happen at end of week or next week. Hes requested a dietician and put me on regular anti-sickness and to try liquids for now like soups/drinks and see how I get on. Lets hope they don't change their mind tomrrow again.

  • Anhedonia
    Anhedonia Online Community Member Posts: 56 Contributor

    I've been thinking of you @rubin16, it sounds like a very worrying situation. I'm so pleased they've given you an update and a plan to help for now! Are you able to keep drinks down? Dehydration is the last thing you'd need right now. I hope your family are visiting often and taking good care of you too.

  • rubin16
    rubin16 Scope Member Posts: 1,244 Championing
    https://forum.scope.org.uk/discussion/comment/1085994#Comment_1085994

    Fluids I can handle, but anything thicker and my stomach rejects. I've asked my nan to bring me some lucosade as I need the energy.

  • Mary_Scope
    Mary_Scope Posts: 3,100 Scope Online Community Children and Family Specialists

    Glad to heat there is a plan in place @rubin16, I hope it goes okay

    Hopefully your nan will be at the hospital soon with the lucozade

  • rubin16
    rubin16 Scope Member Posts: 1,244 Championing
    edited November 26

    So today has been productive, there was a cancellation so ended up having my camera tests. Good news is I don't currently have any active crohn's. Bad news is I have a bended slightly twisted colon/bowel caused by adhesions that have formed from previous surgeries. So could mean I have to have surgery to fix it. I'll get the full picture tomorrow when consultant comes but atleast were getting somewhere.

    I've also been put on regular anti sickness and on just a liquid diet for now. but touch wood I have managed to keep abit of soup down me.

  • Rachel_Scope
    Rachel_Scope Posts: 2,462 Scope Online Community Coordinator

    That's sounding positive @rubin16! I hope you don't have to go through anymore surgery, but I'm really glad you've managed to have some soup.

  • WhatThe
    WhatThe Online Community Member, Scope Member Posts: 4,787 Championing

    Rubin, I have just read about nicotine lozenges which are NHS approved. They come flavoured in 1mg doses. Easier still would be patches - also NHS approved.

  • rubin16
    rubin16 Scope Member Posts: 1,244 Championing
    https://forum.scope.org.uk/discussion/comment/1086290#Comment_1086290

    Thanks for this, my nan wheeled me out for 5mins yesterday so I managed alittle vape and fresh air before pain set in again. but if I need an op i'll prob ask for something as it'll be impossible to move afterwards for abit. i'll find out today whats the next plan is.

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