Having a life long illness: Crohn’s disease tips, advice and chat

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  • เผยแพร่เมื่อ 18 ต.ค. 2024

ความคิดเห็น • 84

  • @itsvegard
    @itsvegard 6 ปีที่แล้ว +61

    this is so important. you gave such a good explanation and it clears up a lot of confusion! i probably have IBS but it is definitely not as bad as what you go through, though at least some things i resonate with and can relate to. also in my experience the doctor kinda just threw it out there and had me leave which kinda sucks...

    • @itsvegard
      @itsvegard 6 ปีที่แล้ว +3

      and though it won't go fully away i hope you get better soon

    • @honest1665
      @honest1665 6 ปีที่แล้ว

      Vegard
      I hope you are feeling great too 💖xxxx

    • @hermionegranger8040
      @hermionegranger8040 6 ปีที่แล้ว

      Love you!!!

    • @jamesanders6114
      @jamesanders6114 6 ปีที่แล้ว

      Vegard who’s this vegard person

    • @hermionegranger8040
      @hermionegranger8040 6 ปีที่แล้ว +1

      + James Anders he is a harry potter youtuber. You shoukd totally subscibe to him, he is my favorite TH-camr.

  • @Kittykatgoroar4
    @Kittykatgoroar4 6 ปีที่แล้ว +15

    chronic illness runs in my family, can see the insane amount of pain it puts people on. hidden illnesses are so hard, especially as the welfare system just doesn't acknowledge them. wishing you the best my friend, you're doing so well so far and although it may not go away you're definitely not letting it ruin your life. keep on going as always.

  • @abluesock
    @abluesock 6 ปีที่แล้ว +21

    Get well soon Laura!!!

  • @TheCrankyCollector
    @TheCrankyCollector 6 ปีที่แล้ว +9

    Hi There , Fellow HP TH-camr :) , I am sorry to hear that you have Crohn's disease as I know all too well how badly it effects someone . I watched your video and your situation is identical to my son . In November 2015 he started to complain of pain in his bowel and he was doubled over in pain and every time he ate the pain was even worse so he stopped eating . I took him to hospital and at first they thought it was acid reflux and gave him some indigestion liquid but it became worse .Then he underwent blood tests and (sorry to be graphic ) stool samples and they found his faecal calprotectin levels to be very high indicating an inflamed bowel. He was put on a course of Prednisolone which calmed down the inflammation but not long after the pain started again .It took months of various tests and he was referred to a paediatrician and eventually in July 2016 he underwent an Endoscopy and Colonoscopy and they found his bowels were very badly inflamed and were surprised that he wasn't complaining of more pain but as he is also Autistic and doesn't communicate very well and has a high pain threshold that is understandable . The hospital diagnosed my son with Ulcerative Colitis and at last after 7/8 months of worrying my wife and I finally knew what was wrong with him but unfortunately as you point out the Doctors didn't no why he has this condition or what causes it .He was put on another long course of Prednisolone slowly decreasing over 8 weeks and was given pentasa (which didn't seem to work ) and was eventually changed to Salofalk . But still he kept having flare ups and his weight for a 5ft 8in 17 year old is only 55 kilos .This year in July 2017 my son underwent another Endoscopy and Colonoscopy and his diagnosis has changed to Crohn's disease .His consultant said that as his previous medication wasn't working(he has had probably at last 3/4 big flare ups since his diagnosis) he now wanted to put my son on azathioprine and told my wife and I of the risks , lower immune system,higher risk of cancer and skin cancer .He started on azathioprine 100mg per day (he also takes Salofalk daily ,and when he has a flare up about 20 tablets per day in all) around July/August and we have to be very careful when it's sunny and make sure that he puts on a lot of suncream thoughout the day which isn't too big a problem in England as you know we don't get a lot of sun .But in October we went to Orlando to Visit the Wizarding World and as it's very hot had to be extra careful and put on lots of sun cream . As my son is also Autistic diagnosed in 2004 he has difficulty around people and doesn't like to be touched so when we go to theme parks busy places we use the DAS or RAP card for people with disabilities so that he can virtual queue and sit in disabled sections ,he also uses the disabled toilets .As you have said we get all the rude comments from people who say "He isn't disabled or "He doesn't look disabled " due to it not being obvious .I try to ignore them and have got used to it after all these years . Thanks for your wonderful video as you can accurately describe the pain my son is going through as he is unable to articulate it to me !I do hope that there is a lot more funding for this horrible illness and I do worry that my son's condition will get worse and eventually surgery/colostomy bag will be the only option but I hope a cure or cause is found before then !The doctor has also given him a course of fortisip to try and get his weight back up . On a happier note he was born on the first day of filming of The Philosopher's Stone :) Keep up the great work with your videos . Regards

  • @natsmyspace
    @natsmyspace 6 ปีที่แล้ว +3

    I have Endometriosis so I understand about chronic pain even though it’s a different condition and how people don’t really understand how much pain you go through. Thank you for sharing and bringing awareness to it. You are strong woman!

  • @EmmaCosgrove123
    @EmmaCosgrove123 6 ปีที่แล้ว +14

    I haven't watched the entire video yet but my dad has Crohn's and I'm glad you made this video as it might help me understand a bit more about what my dad goes through on a daily basis ❤

    • @EmmaCosgrove123
      @EmmaCosgrove123 6 ปีที่แล้ว

      Also, I know it's a completely different illness but when you were talking about invisible illnesses, that hit hard for me as I have Depression & Anxiety and a lot of the points in this video were also applicable to mental health. People just don't seem to understand there's anything wrong with you unless you have a physical illness :/

    • @jamesanders6114
      @jamesanders6114 6 ปีที่แล้ว

      Emma Cosgrove why don’t you just go onto a blog about it with someone who has it or google it

    • @EmmaCosgrove123
      @EmmaCosgrove123 6 ปีที่แล้ว

      James Anders I do but I find videos help more as you're listening to people's real experiences if that makes sense? I would love to find more blogs about things like this though 😊

  • @liamiapalmer9870
    @liamiapalmer9870 6 ปีที่แล้ว +3

    Ppl who say get well soon they don't understand that it's for life. You are so kind saying that you would donate your lovely hair. At least you deal with everything and you accept it and ride it . I've have invisible chronic illness for year's too

  • @puppy9853
    @puppy9853 6 ปีที่แล้ว +4

    I had not even heard of Crohn's disease before, thank you for education me

  • @neplechaukoncena365
    @neplechaukoncena365 6 ปีที่แล้ว +10

    Thank you for sharing your experience :) I have ulcerose colitidis (not sure if that is the correct name in English :)) for almost 10 years now and for me the hardest part was to figure out what is starting my inflation. At the end I find out that it was oat and rye and thankfully from the moment I realised and stoped eating that, I have not had an inflation for 2 years :) I really hope that you will be able to minimise the pain you are in soon.

    • @hitmewithacliche
      @hitmewithacliche 6 ปีที่แล้ว +1

      You are still at risk of flares in future though, sometimes cutting certain things out only reduces symptoms but does not prevent flares. Hopefully you stay in remission.

  • @jennarogan4971
    @jennarogan4971 6 ปีที่แล้ว

    I fully understand how you feel. I'm now 32 and was diagnosed with Crohn's Disease at the age of 19. I had a really bad year 2016, I had to have a majority of my small bowel and my colon removed and have had a Ileostomy bag for the last 2 years. I am scheduled to have a reversal surgery done April 30th and really hope it all goes well. You should be proud of the video you have made as it has been really helpful and informative to me. I have a gastro appoinment next week and am going to question them about the Azathioprine affecting the kidneys as since I have started it when I get a blood test done its been coming back that my kidney function is out of whack. So I want to thank you for bringing that to light.
    I hope you are feeling better now and that life is going the way you want it to be going. Thank you

  • @fannymendelssohn5161
    @fannymendelssohn5161 6 ปีที่แล้ว +3

    I have Crohn's too and can def relate. You put my daily life into words

  • @SophieHarrison69
    @SophieHarrison69 6 ปีที่แล้ว +1

    i'm so proud of you for writing this. Through i don't have chrons, i also have a chronic illness (type 1 diabetes) and one of the most difficult things can be people not understanding. Also raising awareness is so important and you taught me a few things i didn't know.
    Sending you all the best for 2018 and a year of better health. Hold onto the knowledge that it won't be this way forever; you've hs better times before and you can agin xxx

  • @MargotGabriella
    @MargotGabriella 6 ปีที่แล้ว

    I am immensely proud of you for talking about this! people need to know more about these sicknesses. Me, myself, I have a chronic severe headaches disease. When I tell people, they just tell me it's nothing and probably not that bad at all. But when I am in a flare I can barely see, I can't read sentences, I can't concentrate at all, I can barely get out of bed, etc. I wish people knew more about my disease as well :/

  • @madisonlynn5569
    @madisonlynn5569 5 ปีที่แล้ว +1

    Love u, I’m praying , get well soon xoxo❤️💘

  • @liamiapalmer9870
    @liamiapalmer9870 6 ปีที่แล้ว +2

    I said before in a comment on one of your videos that I have life long illness too with my thyroid. A few ppl fans of yours replied to my comment they was very rude to me. I just want to tell you that I understand being I'll so I understand. I hope everything improves for your. I have to take also meds daily all my life xx

  • @MegCubitt
    @MegCubitt 6 ปีที่แล้ว

    I have a condition called idiopathic intracranial hypertension, basically excess fluid in my brain, and have regular brain surgeries to maintain my shunt which is a tube from my brain to my stomach to drain the fluid. I have daily horrible headaches and take an excess of ... perhaps 30 pills a day? It’s so hard having a chronic illness but you’re not alone. I tried doing a physical course, acting, which was my dream, but had to stop it and change to an open uni fine art course. Remembering what you CAN do, as opposed to what’s been taken away from you is important. Thankyou for talking so openly about having a lifelong incurable condition. We are strong and powerful as hell.

  • @lazyfrog2993
    @lazyfrog2993 6 ปีที่แล้ว +1

    Hey, I've recently come to your channel from Sophie and I love what you do. I'm going through the same thing. My mom was diagnosed with collitus back in 2006 and I'm getting a colonoscopy soon. I understand how painful the stomach aches can be. I have a toilet pass for school and all the other kids ask me questions where I go. If ever need anyone to talk to then I'm sure you have many amazing fans that will be happy to talk. I hope you're feeling better. As I'm only 12, I find it hard to cope with school. You will find that the more stress you have the worse it will get so please be careful around exams. Lots of love~ a fellow Griffindor xx❤

  • @graceslife3826
    @graceslife3826 6 ปีที่แล้ว

    Hi Laura I’m Grace I’ve recently been diagnosed with IBS. Your videos help me a lot.

  • @maria-ioanabucur07
    @maria-ioanabucur07 6 ปีที่แล้ว

    this is so emotional. i'm really sorry for you...but i am happy you were brave enough to talk about this because i think a lot of people are ashamed to talk about any illness they have
    love you so much

  • @meetthemoonlight
    @meetthemoonlight 6 ปีที่แล้ว +1

    Thank you for explaining Crohn's Disease! One of my friends has it and it's really hard for her to talk about, so I never really understood it. I really hope you feel better soon and have a good Christmas!

  • @katieannwicked
    @katieannwicked 6 ปีที่แล้ว

    My brother has crohns disease, it is a very hard thing to deal with, thank you for making this video and spreading awareness. Hope you get well soon.

  • @VyPham-sp7hf
    @VyPham-sp7hf 6 ปีที่แล้ว

    I’m so sorry Laura, but don’t forget, we are out there wishing you all the best. Go Gryffindor!

  • @rraychul2
    @rraychul2 6 ปีที่แล้ว +1

    i noticed that Waitrose charity cards are for crohns and colitis this year so i bought a few packs thinking of you. love the awareness you bring to this disease

    • @rraychul2
      @rraychul2 6 ปีที่แล้ว

      thank you for talking about medication and more medication to counteract medication! i have infertility and a few of the medications you take are the same ones i took and i had to do my own research to work out how to protect my body from it all (like the calcium for prednisone). the way you talk so openly is such an inspiration.

  • @micki3520
    @micki3520 6 ปีที่แล้ว

    Everything you described about feeling your food digest and knowing when you will be in pain, that is exactly what I go through but since I dont have a colon i feel the pain within 30 minutes. Wow you are literally describing things perfectly and that is my life as well. Again thank you for sharing this, I know it probably wasn't easy but from a fellow Crohn's sufferer, appreciated

  • @shadowlost1976
    @shadowlost1976 6 ปีที่แล้ว

    True courage is facing the battles one doesn't go looking for. Stay strong young Gryffindor. From a Slytherin fan

  • @Makalasbeautybar
    @Makalasbeautybar 6 ปีที่แล้ว

    Awww I’m crying 😭
    Your so sweet, I have a (rate) blood disorder that has little to no research into it as well and it can be so frustrating when doctors and researchers just kind of push things to the side that need to be researched so I can understand on that level.
    My disorder doesn’t cause me pain any more since I’m in meds to stop my cycle because I developed severe anemia with in the first year of getting it and I still suffer from spouts of tiredness and weakness, on top of blood sugar problems that are getting increasingly difficult to manage.
    This video just really made me so happy, like looking at the plus sides even if they don’t look so bright to you and that’s something I really need to be reminded of.
    your doing great ❤️🖤

  • @Charlotte-ji3vl
    @Charlotte-ji3vl 6 ปีที่แล้ว +5

    This was such an insightful video. I hope u go back into remission for your sake soon.
    P.S. u have great friends and ur not a burden for them they're just (at least they sound like) really decent people. Have a merry Christmas

  • @tillyeq7765
    @tillyeq7765 6 ปีที่แล้ว

    My grandad has had chrons disease for over 50 years now and has had the majority of his intestines removed and has a permanent stoma. This year I’m hoping to do some fund raising as it has little awareness, I’m not sure what I’ll do yet but I’m exited to try and help the charity’s involved!

  • @amanekabbaj
    @amanekabbaj 6 ปีที่แล้ว +1

    Thank you for making this video. You are a very brave person.

  • @micki3520
    @micki3520 6 ปีที่แล้ว

    I just posted a video talking about my Crohn's too. I have had Crohn's for almost 20 years now.It started as UC but after getting my entire colon taken out, we found out it was Crohn's.
    I don't think there is enough awareness about this illness either. I have pain everyday but I look fine so many just dont understand that I really a sick and they dont get what being in constant pain does to the rest of your body.
    Thank you so much for doing this video. It is really appreciated

  • @kamrynloyd5909
    @kamrynloyd5909 6 ปีที่แล้ว

    this video was really helpful as im in the process of getting a proper diagnosis for what my doctor believes is crohn's. the part about the heating pad belt: try thermacare heat wraps! they do make sticky ones for 'menustral' cramps that go on your lower belly, but i prefer the lower back ones which i just turn around for my front side. you open up the package and they heat up within a minute, then you just place it and it velcroes shut in the back! they're about $6 usd for 2, and last around 6-8 hours.

  • @swiftfirebolt6922
    @swiftfirebolt6922 6 ปีที่แล้ว

    Stay strong girl! We're all here to support you. You're a real inspiration to me and many others so don't ever forget that.❤️❤️

  • @aaliyahhussain4869
    @aaliyahhussain4869 6 ปีที่แล้ว

    Aww it's really upsetting to hear you have this disease and I really hope they find a cure for this, just stay strong I'm glad you did this video to raise awareness on this disease to make people more aware of this disease and I'm glad to see you smiling through this. Carry on smiling 🙂we will beat this disease one day

  • @alyssia5949
    @alyssia5949 6 ปีที่แล้ว

    My dad got diagnosed with crohns disease this year. Thanks for explaining everything for me as my parents don't seem to tell me everything that's going on x it seems to of effected his life pretty badly , he had to get surgery to get part of his colon removed and almost got a bag. I hope you feel better soon ily xx

    • @alyssia5949
      @alyssia5949 6 ปีที่แล้ว

      Also thank you for trying to raose awareness about thos i really apreciate it xx

  • @Katyestella63
    @Katyestella63 6 ปีที่แล้ว

    Thank you Laura for your very informative and insightful video. I also have an invisible illnesses: Autism Spectrum Disorder, Fibromyalgia, Depression and Anxiety as well as now and again I have IBS flare ups which worsen when I am run down, or when I eat certain foods (do not know which ones yet), and stress and anxiety.

  • @ojeinekatze
    @ojeinekatze 6 ปีที่แล้ว

    I looove your talky videos! And as a person who is also suffering from an illness that has a big impact on life (long term effects of a whiplash in my case) hearing you talk about some of the more general aspects of being chronically ill is super relatable. Hope your flare chills the f out soon and that you have the best Christmas possible rn 🧡

  • @markockwell
    @markockwell 6 ปีที่แล้ว

    I Laura as a fellow sufferer of Crohns as well as corrosive colitis I know what you are going through. My thoughts are with you sweet, hope you feel better soon. Have a Pottering New Year from a RavenClaw....8)

  • @makaylasawyer5928
    @makaylasawyer5928 6 ปีที่แล้ว

    I really hope you feel better soon Laura! I’m so sorry you have to go through this and I hope you go into remission soon. Stay strong Laura. We’re all here for you. Merry Christmas!

  • @sonyastodghill8328
    @sonyastodghill8328 6 ปีที่แล้ว

    Thank you for sharing this information. Praying for remission. Your very lucky to have such great mates.

  • @NotinUse-gs2bm
    @NotinUse-gs2bm 6 ปีที่แล้ว

    Thank you for raising awareness, I really knew nothing about it and you have really helped me understand this
    I really hope your flare goes down soon so you can enjoy the Christmas holiday more
    Merry Christmas we support you and love you ❤️❤️❤️

  • @rachelsophie5773
    @rachelsophie5773 6 ปีที่แล้ว +4

    You should look up Paige Joanna on TH-cam, she often documents her experience with chrons disease.. Merry Christmas and look after yourself, sending love x

  • @daniellevanderwaal3317
    @daniellevanderwaal3317 6 ปีที่แล้ว

    I love you so much for this Laura, thank you so much

  • @eikmadsen9962
    @eikmadsen9962 6 ปีที่แล้ว

    I love you so much Laura. Stay strong

  • @focusamy4265
    @focusamy4265 6 ปีที่แล้ว

    hellooooooo just wanted to say i love your channel and i hope you feel better soon 💜 i don’t know how you stay so positive but i hope you do & ilyyyy 💜💜💜

  • @honest1665
    @honest1665 6 ปีที่แล้ว

    I know you can't exactly 'get well soon' but I still want you to get better 💖
    I get so much inspiration from you every single day xxx
    Stay strong, 💖💖💖💖💖💖💖💖
    Edit: you are definitely not a burden Laura, you are the complete opposite, you are a joy to the world 💖

  • @kajaaskeland3226
    @kajaaskeland3226 6 ปีที่แล้ว

    Thank for the information! I didn't know everything about chrons before

  • @helengarrett6378
    @helengarrett6378 4 ปีที่แล้ว

    My Mom had chrones and psoriasis. They are both autoimmune diseases. She had chrones for the longest time but only got a diagnosed late in middle age. Doctors kept telling her that it was just a stomach upset until she had some terrible bleeds. She never complained about psoriasis even though it made her hair look like she had the worst dandruff ever. That was the excess skin flaking and she had big patches on her elbows. But she was really sick with the chrones and had bleeding and arthritis too which goes with chrones.
    I lived with my mother's problems all my life and I know how painful and sick this makes you. You are being treated and I hope the treatments quiet your flare up. Mom didn't get appropriate treatment until her symptoms could no longer be brushed off as hypochondria or eating something that was off. You are having g a rough time. I'm sorry. I wish you well.

  • @whatislovebabydonthurtme1
    @whatislovebabydonthurtme1 6 ปีที่แล้ว

    Laura, im only a child but I think this disease is really bad and I have lisnted to this video and I want you to get well soon I love you Laura ❤❤

  • @minislim5
    @minislim5 6 ปีที่แล้ว

    Wow you truly are an amazing person :)

  • @elliecowna7549
    @elliecowna7549 6 ปีที่แล้ว

    I don’t have Crohns but I have ulcerative colitis which is horrible as well so I can relate Laura x

  • @danicacoote4952
    @danicacoote4952 6 ปีที่แล้ว

    I love your videos and your ascent 💖💖

  • @elizaharrison8853
    @elizaharrison8853 6 ปีที่แล้ว

    This must be absolutely awful, you’re so strong. I’m not trying to sound insensitive at all I’m just trying to put the pain you have into perspective but is the pain like a period cramp 10000000000x ?

  • @jasminesniffler2737
    @jasminesniffler2737 6 ปีที่แล้ว

    You should also do a story time on your chrons! Xxxx

  • @dlockeartist
    @dlockeartist 6 ปีที่แล้ว

    I have Crohn’s Please make more Crohn’s videos

  • @kyte.the.adventurer9748
    @kyte.the.adventurer9748 6 ปีที่แล้ว +3

    Aww laura :-) wish u the gift if remission for Christmas and new yr so u can get on a t uni :-)

  • @jasminesniffler2737
    @jasminesniffler2737 6 ปีที่แล้ว +1

    Laura, did you know that you can get invisible illness badges from the people who run the trains so you always get a seat? Thought it may help you Xxxx

  • @issymannering6841
    @issymannering6841 6 ปีที่แล้ว

    somone in my family has chrons and a few have genetic disorders and we all know how you feel and it really does suck and people dont get it in shcoll sometines my legs start to swell for no reson and it is painfull but people just think im a drama queen and i am just looking for attention and it sucks but i have to live with i know from information from that somone in my family that croans is horrible and painful and i cant imagine what feels like i wish the best of luck to you and just keep pottering

  • @arelabae4577
    @arelabae4577 6 ปีที่แล้ว

    I am so sorry this is happening to you. I will pray for you #Lumos

  • @AbyssMaver1ck
    @AbyssMaver1ck 6 ปีที่แล้ว

    First - Thank you for this.

  • @MargotGabriella
    @MargotGabriella 6 ปีที่แล้ว

    could this be deadly? I have a double sculisose, a broken meniscus and a chronic severe headache disease :/

  • @sarahmoore7314
    @sarahmoore7314 6 ปีที่แล้ว

    My hubby gets looks when he sits in disabled seats on the bus when his crohens plays up has we have difficulty I'm getting passes in Wales for buses but he has a disabled rail card he gets upset telling them he got crohens then some accept it

  • @kayseek1248
    @kayseek1248 6 ปีที่แล้ว

    Are there any Gryffindor struggles like... at all?

  • @paperbackdino
    @paperbackdino 6 ปีที่แล้ว

    Even though I don't know the person who disliked this video I hate the person who disliked the video😐😤😠 I hope your ok Laura though 🙂☺

  • @freyacollins6810
    @freyacollins6810 6 ปีที่แล้ว

    Hope ur flare finishes very soon!!!

  • @SeanCortrightMusic
    @SeanCortrightMusic 6 ปีที่แล้ว

    Thanks for sharing! I too have a lifelong illness. I'd love to chat with you about this sometime if you're interested. Reaching my hand out in friendship too.

  • @laurencimorellibow
    @laurencimorellibow 6 ปีที่แล้ว

    Do you not qualify for a medical exemption certificate?

  • @mar-bj9uc
    @mar-bj9uc 6 ปีที่แล้ว +3

    Ly

  • @annalaurie9844
    @annalaurie9844 6 ปีที่แล้ว

    I feel bad for you😔