MY LIFE WITH UC - What Is Ulcerative Colitis?

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  • Опубліковано 19 тра 2024
  • NEWLY DIAGNOSED WITH IBD?
    Effie Siamalekas was just diagnosed with UC. She wants you to know what she didn't so you can understand what's happening inside your body and take action to live your life your way despite having a chronic, invisible illness. It's honest, interesting and compelling. Have a look at this self-produced video.

КОМЕНТАРІ • 1 тис.

  • @ryanalexharris
    @ryanalexharris 3 роки тому +344

    Great video. In a flare right now and I forgot how it feels. It has been a long time since I’ve been this bad. For anyone reading, cutting out gluten and dairy are the first two objectives I would plan for. Gluten breaks down the junctions in the small intestine. Most of us are also lactose intolerant, as we lose the enzyme that breaks down lactose after adolescence. Nutrition will go a long way in managing the disease! Meds are definitely necessary when things are bad, though. Everyone is different, but look into the SCD diet, the AIP diet, or GAPS if you’re up for real intensity. I haven’t managed to stay on one consistently. It’s a lot of work. A lot. I hope anyone reading this will find peace and happiness in their healing. Only those with IBD truly know how I feel. We’re in this together. Love.

    • @amnvendetta5289
      @amnvendetta5289 2 роки тому +4

      try carnivore dieet for 2/3 monhts

    • @janetoche1725
      @janetoche1725 2 роки тому +5

      Thanks so much my bf just got diagnosed with UC and we are at the moment pretty overwhelmed with everything but gradually we are trying to stay positive and research on any helpful informations that will help us as family in the new normal life for us now. Thanks everyone here for sharing their experiences and advice and of course for making this video ❤️❤️❤️🌈🌈🌈

    • @idreeskhan8885
      @idreeskhan8885 2 роки тому +5

      I dont know if I have this disease but I fear I might. I had a constant urge to urinate for like 7 months and now I am having problems going to the toilet too. Fevers and general weakness were common during the stage where I 'only' had an urge to urinate. I think it could be IBD. How likely is it to end up in hospital? I never want to get sick and taken to the emergency room, can this be avoided?

    • @janetoche1725
      @janetoche1725 2 роки тому +3

      @@idreeskhan8885 you have to see the doctor asap!!! I wish you all the best 🥰🥰🥰🙏🙏

    • @idreeskhan8885
      @idreeskhan8885 2 роки тому +3

      @@janetoche1725 I got and even a month after going they still havent sent me a letter....

  • @markwoodson8085
    @markwoodson8085 3 роки тому +278

    I just want to say you did an outstanding job explaining this disease. Probably better than half the Drs. They rush you in and rush you out like cattle. I hope that the treatments get better for people with this. I'm sure this is not easy to live with so stay strong.

    • @alexcabaangable
      @alexcabaangable 3 роки тому +2

      agree 100%

    • @mariahconklin4150
      @mariahconklin4150 3 роки тому +2

      Exactly! I went to one dr and he said that I need to eat vegetable. Went to an actual doctor urgent care and they took what I was saying seriously

    • @queenofcamp832
      @queenofcamp832 2 роки тому +7

      This is so true. My boyfriend was diagnosed with UC about 2 years ago and they explained the diagnosis to him super quickly while he was still high on the sedatives from his colonoscopy. He asked for them to bring me in as he couldn't process what they were saying and they simply shoved a leaflet in my hand and ushered us out of the room. This video is so much more helpful and less daunting.

    • @sarabouamri8758
      @sarabouamri8758 2 роки тому +2

      Really did explain it so well better then drs for sure 🙏

    • @Lidiam2023
      @Lidiam2023 2 роки тому +1

      @@queenofcamp832 hey! How has your boyfriend been? My boyfriend got diagnosed with colitis yesterday and I’m worried.

  • @UOITDurhamCollegeNSO
    @UOITDurhamCollegeNSO 4 роки тому +158

    It's obvious that this video was not easy for you to make, and I'd like to thank you for pushing through. Excellent work. I wish you many flare-free days.

  • @FromSimone
    @FromSimone 3 роки тому +27

    Shoutout to all my other Canadians living with this! You're not alone 🙋🏻‍♀️

    • @jj6440
      @jj6440 3 роки тому +1

      it hurts alot :(

  • @Rohan-go4oo
    @Rohan-go4oo 2 роки тому +62

    I found your video comforting. 20 years I have had UC. The last 10 years have been tolerable. As a man, the worst part, is the lack of understanding, or even empathy. I had work mates mock me, for needing to go to the toilet, even though they had known for 5 years I had a chronic condition. My own mother has made disparaging comments, relating to me being sick.
    If I had cancer, they would be giving hugs, comforting me, but UC, they think you are not really sick. You just have diarrhoea (×20 times a day, for 10 years).

    • @hassanmazza1831
      @hassanmazza1831 2 роки тому +9

      I’m sorry to hear that mate. As a Male it is harder and not only is it a condition that affects your digestive system but your whole body, mentally too, and thats not considered in people’s feelings and attitudes towards chronic conditions. I hope you find relief and ease in your life, as I wish with all sufferers

    • @edwardkennedy9919
      @edwardkennedy9919 Рік тому +2

      I've had uc for 18yrs, diet plays a big part I've found the carnivore diet to be very helpful.

    • @garythesnail7631
      @garythesnail7631 Рік тому +3

      I've been diagnosed this morning I'm a man 20 and I'm worried.

    • @Rohan-go4oo
      @Rohan-go4oo Рік тому +7

      @@garythesnail7631 Was your diagnosis 'severe' UC? I didn't seek assistance until I was extremely unwell, fainted in the shower, from internal bleeding, and had to have numerous blood transfusions.
      I was given medical advice from a GP and non specific surgeon that hindered my management.
      Things turned around for me, by being included in a research study, being conducted by a professor at a university.
      His told me, not to fall into the trap, of looking for miracle cures, just eat a normal varied diet. Keep at the high end of a normal weight range, don't get overly fat, but muscle weight it OK.
      For an example, I went through Army basic training at 90kg, I wasn't an athlete, but didn't struggle through fitness training.
      When I was 30, really sick, and first admitted to hospital, I was less than 70kg.
      Now, at 50 years old, I am 110kg, and the doctors are not concerned by my weight.
      Once you have a good gastroenteroligist, follow pill taking regime ... exactly. When they tell you to have a colonoscopy, endoscopy, MRI, do it ... don't put it off.
      The drugs you take, may be different in your country, when I started on mine, it was always an issue, with the pharmacist, they didn't like that the 3 drugs prescribed were seemingly, contradictory to each other. I am still taking them 15 years later, and are in pretty good health.

    • @edwardkennedy9919
      @edwardkennedy9919 Рік тому +2

      @@garythesnail7631 change your diet, cut out sugar, all processed foods.

  • @constancelupo4752
    @constancelupo4752 3 роки тому +19

    I was diagnosed with UC at age 71 I'm so sorry you have to deal with it at such a young age.

    • @olir3601
      @olir3601 3 роки тому +1

      Aw I was diagnosed at 7, I’m 15 now. I’ve always wished I had more time to be healthy. I’m sure you do to!

    • @subratadas9942
      @subratadas9942 2 роки тому

      @@olir3601 How are you now? Any further problems are you facing?

  • @pittchaser
    @pittchaser 2 роки тому +34

    Thank you. My mum just sent me this video. I've been in hospital for a week and just found out I have severe UC. I was in pain for over a week at home before this, constantly going to the toilet and in extreme pain. I'm 32, have also been recently diagnosed with psoriatic arthritis. I've been so down but now I'm learning more its getting easier. They estimate ill be out of hospital in 5 days.
    Can't wait, I need my life back!
    Thanks again, from Western Australia :)

    • @sheebaahmad4830
      @sheebaahmad4830 Рік тому +1

      UC makes bones weak. Also one can have osteoporosis alongwith UC. I hope all UC patients heal soon

    • @SRBOMBONICA86
      @SRBOMBONICA86 Рік тому +1

      You are from a rich country ,you are lucky ,people with this illness die in many countries

    • @ashrafraza9738
      @ashrafraza9738 Рік тому

      @@sheebaahmad4830 hindi me Bata sakti hai kya please

  • @mjmj4544
    @mjmj4544 3 роки тому +42

    It’s 4 years since you uploaded the vid. Hope you are doing well and that you are in peace.

    • @Xuevium
      @Xuevium 2 роки тому

      She has Never one single time, responded to any comments on here or even given a single like. That is really lame and sad, especially after years have gone by.

    • @AnonymousanonymousA
      @AnonymousanonymousA 2 роки тому +1

      @@Xuevium don't think it's her specific channel

    • @dancerloverish
      @dancerloverish 2 роки тому

      @@Xuevium It looks like it isn’t her channel. Most probably she was asked to share this info. Also, probably for advertising the app she was talking about in her video….

  • @konchilatte5330
    @konchilatte5330 3 роки тому +67

    Whenever I get stressed I have an episode

    • @V1b2910
      @V1b2910 3 роки тому +8

      Me : Get stressed.
      UC : Welcome to the next episode of "You're F***d".

    • @mcildaftie
      @mcildaftie 3 роки тому

      Great video. Thanks for doing this

    • @mariahconklin4150
      @mariahconklin4150 3 роки тому

      Me to! This is why I’m getting tested at urgent care tonight

    • @eliaskanaan5960
      @eliaskanaan5960 2 роки тому

      Same

  • @SkinnLotion
    @SkinnLotion 2 роки тому +38

    I was just diagnosed 2 days ago and this really helped me understand a lot. I didn’t know how to tell me job nor have I ever called in or missed work, but some how I pulled through and told them what was going on with my body. I’m now working on a food journal to prepare myself for my new normal.

  • @blackpistolcompany3482
    @blackpistolcompany3482 3 роки тому +89

    This is the best video on UC I've ever watched. Taught me more in one watch than I've learned since being diagnosed 4+ years ago. Ill be saving this video to rewatch for sure. Thanks for your work.

  • @deefreeman59
    @deefreeman59 2 роки тому +12

    Damn girl...you should be a spokesperson for this disease. BRAVO! I don 't have Crohn's or UC but I totally understand it now!

  • @simonhainaux2579
    @simonhainaux2579 3 роки тому +45

    Just wanted to say I truly admire your courage, you are an amazing person. To everyone diagnozed keep strong, you are not alone, have an amazing life!

  • @calebjames2928
    @calebjames2928 3 роки тому +5

    Thank you so much for this. Video saved for rewatching. I learnt more in these 10 minutes than I have talking with my doctor and specialists over the last few months. I found it encouraging as well, which for any sufferers of UC, is something sorely needed as it can feel like a lonely and pretty dark battle at times. Thank you.

  • @RavenDeandra2015
    @RavenDeandra2015 3 роки тому +16

    I just got diagnosed so this really helped me understand what’s going on. I’ve really been so embarrassed this past month because I haven’t been able to work and when I do I’m stuck in the bathroom. Thank you for giving me hope

  • @stevena.2306
    @stevena.2306 3 роки тому +1

    Thank you for posting this. My son was just diagnosed; I knew most of what you were saying it is just good hear someone living with it.

  • @SHOWNTELLx
    @SHOWNTELLx 3 роки тому +2

    Thank you so much for making this video. It makes so much sense. I have experiences so many flares up and was so confused for so long. Thank you for clarifying everything and making it so easy to understand.

  • @annastiasiacox9422
    @annastiasiacox9422 3 роки тому +6

    Thank you so so much for this!!! I was diagnosed this year and definitely needed this.

  • @kaitlin9288
    @kaitlin9288 2 роки тому +2

    Got diagnosed back in May, after about 6 months of panic and a lot of physical pain. This video gets the message across so succinctly, and it really helped me develop an understanding of what was/is happening with my body, and has helped me come to terms with my diagnosis (it's also a great resource for explaining this to other people). Thank you for sharing this with us, and I wish you all the best!

  • @TheMrjetdoc35
    @TheMrjetdoc35 Рік тому +1

    I've had this for 12 years. You've hit every topic, symptoms, and advice perfectly. Thanks for sharing. Keep up the good fight!

  • @princzainzain5201
    @princzainzain5201 3 роки тому +2

    Thank you for the much needed information . God bless you and my heartfelt prayers for you speedy recovery

  • @kalsingh2629
    @kalsingh2629 3 роки тому +10

    Thank you for sharing your journey with us. As a parent with a teenage son recently diagnosed with UC, we are going through a mixed bag of emotions. We have good days and some not so good days. Your video gives us hope and the strength we need to focus on the positive. God bless you.

  • @sharonbryce7724
    @sharonbryce7724 2 роки тому +1

    Thx for this. Quite helpful. Downloaded the app. Just diagnosed at 54 - mild to moderate UC. You’ve done so well to get to the point you have with severe disease. Good on you.

  • @mustafakemal9547
    @mustafakemal9547 3 роки тому +1

    Im proud of u too, that was very elegantly and honestly done.

  • @kevinetherington570
    @kevinetherington570 3 роки тому +1

    Thanks for the info.....I've had these symptoms going on for a awhile now. Had to call in sick and making an appointment with my family doctor.
    Take care and stay safe!

  • @eddierobles2137
    @eddierobles2137 3 роки тому +3

    Thank you so much for your video . I was recently diagnosed with colitis and your info has helped me understand better what I am facing. 👍👍

  • @timryan9220
    @timryan9220 Рік тому

    I just saw this today, and I'd like to thank you for being so honest and detailed about what you have been through. I hope and pray you are doing well and spending the majority of your time in remission.

  • @kclayhumble2146
    @kclayhumble2146 Рік тому +2

    Thank you for this video Sis. I pray that your condition has improved. I’ve shared the App with my close relative and I’m committed to helping them fight this disorder.

  • @4themotherload
    @4themotherload 3 роки тому +4

    My 7 year old was recently diagnosed with UC. It's journeys like yours that you are sharing that will help not only parents but the patients. I hope your doing well and thriving😊 - thank you for sharing!

  • @pgrieger
    @pgrieger 3 роки тому +16

    I have lived with UC almost 40 years now...didn't realise my age until calculating...life is possible with all considered. I cycle, fluctuate in weight/shape and dance to all genres. Seems to be genetic and theories of stressful environment are popular around me but I am amazed that you explain things so detailed. I understand more than ever and hope to come across more about your sharing. You taught me logically linked biological concepts that I never knew eventhough I researched about embarrassing symptoms and possible IBD issues from the age of 10 years. Thank you for every word, overcoming embarrassment and most if all sharing about you. More than appreciated and admired.

  • @kiranvepa549
    @kiranvepa549 2 роки тому

    Thank you for such detailed information. My mother has been suffering from UC and I can relate to all the symptoms and experiences you shared. Really appreciate you coming forward and sharing this. Wishing you the best!

  • @luceroramos24
    @luceroramos24 3 роки тому +2

    I was recently diagnosed with Uc at 29 years old and felt super stressed and hopeless but this video definitely helped me understand more and feel better Thank you

  • @m6muthi
    @m6muthi 3 роки тому +4

    We are all in this together. Words can help and has an impact on all of us. Wishing everyone that are having symptoms to stay calm and all storms end, eventually 🙏 so just hang in there 🤗

  • @artformarket
    @artformarket 3 роки тому +7

    5 years later and this is still the BEST video I've seen on the topic. Thanks for the courage. Really.

    • @Xuevium
      @Xuevium 2 роки тому

      5 years later and she has Never one single time had the humanity to like one single comment, or reply to one single comment. That is really sad.

  • @sarahmontano1751
    @sarahmontano1751 3 роки тому +1

    Thank you for this video. I shared this with friends and family, it really helped explain to what I was going through.

  • @jamesreed7385
    @jamesreed7385 3 роки тому

    Thankyou, had it since 1990, recently had a op that wiped me out. But I’m still going, never spoken to anyone so hearing a another voice is great. I avoided meds until recently preferring dietary improvements but that only worked for so long. Now I try to listen to my body, optimise my diet with as much unprocessed quality food, take time eating and rest. I take numerous vit. supplements and hope health care discovers something. All the best, thanks again

  • @atij6356
    @atij6356 2 роки тому +4

    I have been diagnosed with diverticulosis and get diverticulitis flare ups way to often. I came to this video to understand if I have symptoms of UC and might have been misdiagnosed. You have explained this very well, and I pray for everyone living with UC.

  • @gailtriff3024
    @gailtriff3024 Рік тому +5

    what a sweetheart you are!! I’d love to be your Gramma! I’m really proud of your ability to talk honestly and very openly about your symptoms, Honey!!
    I’ve been having symptoms for many years.. but what seems to have started this OVER THE TOP EPISODE, seems to have been a terrible stress and anxiety attack concerning someone I. My life..
    I became really sick, had awful unloads of bloody, mucous stools… along with serious pain!
    I’m still trying to discover everything I can about both IBS and IBD!
    I want to thank you most sincerely, for your enlightening video!

  • @andrewellis2184
    @andrewellis2184 Рік тому

    Thank you for this video! Ive been diagnosed last year and its been a constant struggle. Greatly appreciated.

  • @buucky
    @buucky 3 роки тому

    Awesome job and a very brave thing to do. A strong woman at her finest. Thanks

  • @dthomas6739
    @dthomas6739 2 роки тому +4

    I understand every word that you shared. I myself going through this UC(ulcer colitis).
    The concerns when the urge comes to go to the bathroom is very stresful.
    My family is very supportive and also my job too. I hope that you get better.
    God bless you.
    Thank you.!

  • @illawallaroo
    @illawallaroo 3 роки тому +11

    Such a helpful video! I’m researching for a member of my family who has UC.

  • @ashleymcdonald82
    @ashleymcdonald82 10 місяців тому +2

    Thank you so much for the clarification because I’m new to this horrible disease and nobody around me understands what I’m going through at times. You taught me more then the doctors smh

  • @aquaholic3
    @aquaholic3 Рік тому +1

    Thanks for such a great video. I’m 62 and was diagnosed UC at 59. In a flare as I write this and, to be honest, and scared that the “bag” might be in my future. Anyway, you’re a very brave young lady and will look up you more recent videos to see if there are any updates.

  • @telassparks9481
    @telassparks9481 2 роки тому +4

    Hey, thanks for sharing your story. It took a lot of guts?! It was very informative and simply explained. Sharing your story helps destigmatize the disease. You’ve done a public service (PSA) by testifying to your trials + tribulations. You’re a super hero! I feel slightly better knowing that they’re other people also enduring through this like me. I think talking about it and sharing tips can help us get thru this.
    I’m currently immersing myself into yoga. I believe I’m on the right path. I believe ulcerative colitis can be managed and possibly cured taking a holistic approach. Meaning, it takes a bunch a “lifestyle choices” that will keep the disease in remission. Eat right, exercise right, sleep right!!! Thanks, again. Stay humble + healthy!!

  • @TechWeLove
    @TechWeLove 4 роки тому +8

    Thank-you for sharing your story with all of us. We pray for you to endure through this, and to find the proper balance to managing those symptoms.

  • @alfredadamssr.3894
    @alfredadamssr.3894 2 роки тому

    Remarkably articulated ,I wanted to hear more ,thank you so much ,I learned a lot,, I pray that you stay strong and all of us with this disease learn to manage it better

  • @nathaliep8512
    @nathaliep8512 Рік тому

    Great video. Well done! Thank you for sharing your story, and, like many, like myself, parts of it were probably very uncomfortable or difficult to share. The part about accidents, and always wanting to know where the nearest washroom is, almost got me crying. This was well presented and I’m sure I’m not the only one who appreciates what you’ve done here. Take care of yourself! 🤓👍🏻

  • @gc3187
    @gc3187 2 роки тому +8

    My heart goes out to you. My daughter is 22 and was diagnosed in January. Although she has had stomach issues for a few years and we went to so many doctors but none of them found anything wrong until this January. I thank you for sharing this video.

    • @MikeTheGreatCC12
      @MikeTheGreatCC12 2 роки тому

      Hello, how was your daughter diagnosed? For example, colonoscopy, imaging, blood work, etc? I would appreciate it as I'm currently trying to diagnose myself.

    • @rynos1360
      @rynos1360 Рік тому

      @@MikeTheGreatCC12 I had a colonoscopy last year they didn't find anything, then yesterday I had another one and I've been diagnosed with uc

  • @kathykerkhoff9234
    @kathykerkhoff9234 2 роки тому +9

    I am newly diagnosed and 67 years old! thank you for this wonderful explanation of the disease. It IS the best I've seen yet! I do so hope you are doing well and that I can get out of this flare and succeed as you have shown me is possible. I am a nurse and had many patients throughout my career with this disease but never thought I'd be at the other END of the issue! Thank you for your courage to do this for us new folks!

    • @nildhar4998
      @nildhar4998 Рік тому

      Kathy what is your condition now?

  • @cyrosmaryam
    @cyrosmaryam 2 роки тому

    Effie, thanks so much for your brave, wonderful and very clear explanation. I know it has helped out my son a lot. I hope you are well and healthy.

  • @sazzlepop321
    @sazzlepop321 2 роки тому +1

    What an eloquent and strong young woman. Thank you 🙏🏻

  • @langstonmcguire386
    @langstonmcguire386 4 роки тому +27

    I've had it UC fir 2 years and its ruff but God is still good in the midst of everything goin on around us. Thank you so much 4 the video. Keep strong life is just a moment that leads to eternity. You will be in my prayers. @effie siamalekas

  • @luis07221990
    @luis07221990 3 роки тому +2

    Thank you so much for sharing!!!! Very encouraging didn't know if there was hope but you definitely have given me hope thanks for explaining in depth! Every point hit home brought me to tears God l you!

  • @rosannabonfilio8237
    @rosannabonfilio8237 3 роки тому

    I've just been recently diagnosed & doing lots of research. This video is the most concise, easy to understand explanation I've come across. I will be using this video to educate my family & friends. Thanks.

  • @ladiesofiron
    @ladiesofiron Рік тому

    Thank you SO Much young lady, this was awesome! I sent this to my daughter who has been diagnosed with uc. Again, thank you❤

  • @jamledger5238
    @jamledger5238 3 роки тому +10

    Damn that’s hard, it’s really amazing that our bodies stay together at all

  • @knash965
    @knash965 10 місяців тому +8

    Thank you for making this. I was diagnosed around 6 years ago. Right now, I'm in the middle of a flare and I hate it. I hope you're doing well!

    • @suliyachannel1739
      @suliyachannel1739 3 місяці тому +1

      Are you feeling better now ? How did you improve it ?

    • @knash965
      @knash965 3 місяці тому

      @@suliyachannel1739 Doing better now! I haven't done much other than stay on my meds. I do what I can to reduce stress too.

  • @jocase6956
    @jocase6956 2 роки тому +1

    Agree with MW this is the best explanation I have heard and seen. Thank you.

  • @alirio.saldanha
    @alirio.saldanha 3 роки тому +1

    Straightforward explanation! Highly commendable! :)
    Understood UC in 10 minutes from you. My docs have not been able to simplify it over the last 15 years :(
    Wish you healing and blessings 🙏

  • @m0ony1
    @m0ony1 3 роки тому +47

    I was studying this topic today for my med school and glad i came through this video. Such a helpful and emotional video.. thank you so much for sharing your story. God bless you and my heartfelt prayers for you and everyone suffering from ulcerative colitis.

    • @graspknowledge8799
      @graspknowledge8799 2 роки тому

      @@Michelle-qd9gm hey I’m from India 🇮🇳 and I got uc it’s been 1year I’m under medication I have a question will it completely get back to normal someday or I would have this pain my all life

    • @umernawab4558
      @umernawab4558 2 роки тому +1

      @@graspknowledge8799 Hi I’m from Pakistan 🇵🇰 and I’m pretty sure there is no known cure for ulcerative colitis same as hypertension but yes it can be controlled with medications like it will calm the inflammation and it’s good that you manage the diseases rather than the disease manage you so I hope it will be a bit informative for you and you will feel better soon…

    • @ashrafraza9738
      @ashrafraza9738 Рік тому

      @@umernawab4558 bhai aap mujhe hindi me samjha sakte ho kya please

    • @umernawab4558
      @umernawab4558 Рік тому +1

      @@ashrafraza9738 bhai is bimari ka abhi tak koi muqamal ilaaj nahi aya par inflammation ko rokny ky liye ap dawai ly sakty ho…

    • @ashrafraza9738
      @ashrafraza9738 Рік тому

      @@umernawab4558 aapne kon si davayi li?

  • @michewilk
    @michewilk 3 роки тому +3

    Thank you for sharing..I was diagnosed as a child at the age 12..It sucks so bad..I am now 51 and I went into remission for a decade and now its back in my 50's........you are so brave and I am proud of you .. Covid stress brought it back

  • @tridoshic1688
    @tridoshic1688 Рік тому

    Literally the best video on UC I've seen. All the info put together so concisely. She basically went through the same thing I did, I also had pancolitis and lost about 25lbs.

  • @vikingwind25
    @vikingwind25 Рік тому

    Thank you so much! What a brave and intelligent young lady. You posted this 6 years ago. I would love to hear where you are today. I have just started this journey.

  • @Tugboat511
    @Tugboat511 2 роки тому +6

    I was just diagnosed two days ago and have been researching like crazy. This is the best, most honest assessment I have seen. Thanks for your honesty.

    • @amandawesley580
      @amandawesley580 2 роки тому +1

      Try contacting Dr folonsho, he Is a herbal doctor, he healed me from UC, this disease is really terrible, I can only feel what you are going through now

    • @Destination_diaries27
      @Destination_diaries27 4 місяці тому

      How are you? I just dianosed with colitis.

  • @mrclean2022
    @mrclean2022 3 роки тому +4

    You're clearly a sweet person and thank you for having the courage to share some really helpful and personal information about something that would be tough for anyone to deal with. Your video was a million times better than a video of a robot voice just reading facts and symptoms to you.
    That being said, someone I care about and is close to me has been dealing with this lately, hopefully others can share more of what's working for them besides just medication.
    To you (or anyone reading this) Does fasting help? Which foods trigger you? What's the longest period of remission you've experienced and what contributed to that the most do you think?
    Thank you, hope to exchange information with you and/or others and share ideas to improve one's quality of life.

    • @sakanablesakanable
      @sakanablesakanable 2 роки тому

      Can you Please tell me if Gluten free and Lactose free Diet has worked for you?

  • @booz394
    @booz394 2 роки тому +1

    Just diagnosed. Thank you for this video, it is much appreciated … I was taken aback when you said that it’s common within the Jewish community; as our Jewish community here in Southern Africa is so small - that the doctors here didn’t mention it me - but I guess it all makes even more sense now.
    Thanks again, wishing you much health.

  • @AidenCorvas
    @AidenCorvas 2 роки тому +1

    Amazing explanation on things. I always have odd looks when I try to explain. They should play this video to any new person diagnosed with this cause it’s so informative.

  • @drag6663
    @drag6663 3 роки тому +24

    When I was first diagnosed I was 215 and it dropped me to 165 and recently I have a lost of appetite and more frequent bathroom runs in the middle of the night.

    • @edgywedgie9307
      @edgywedgie9307 3 роки тому +2

      I was diagnosed recently, I only dropped 20 pounds but I was already light so not good. I also have a loss of appetite, I cant even finish a burger anymore

    • @jcs_gaming_3118
      @jcs_gaming_3118 3 роки тому

      lol 🤣 yeii there's something good about this. Weight loss 🤣

    • @watrgrl2
      @watrgrl2 2 роки тому

      I’ve also lost weight but I desperately needed to lose so that’s fine. I hear you about night time bathroom visits. It’s very disruptive of sleep. Sometimes I just give up and take a nap the next day if possible.

  • @darb4091
    @darb4091 2 роки тому +10

    Big kudos to her for stepping forward and sharing her story. 21 years ago I had my colon removed because of UC; when push came to shove I was so sick for so long that I happily handed it over on a gold platter. That left me with an ostomy bag for six months before they did J pouch surgery which is essentially when they build an internal ostomy bag out of small intestine. An extreme outcome, but ever since been happy and healthy without any incidence of UC.

    • @kmackblack
      @kmackblack 2 роки тому +1

      This is what they’re pushing on me right now. I’ve only been diagnosed for 4 months and I’m just not mentally ready for surgery. I’ve just started infusion treatments and if I don’t respond to this I’m just going to have the surgery. I’ve been told by the surgeon that the second surgery (j pouch) has an 80% success rate and the other 20% have a stoma bag forever. That’s heavy for me as I’m in my 30s. But if I continue on with quality of life diminishing then I’ll take my chances.

    • @darb4091
      @darb4091 2 роки тому

      @dani cali I can remember when I was first diagnosed and the doctor explained the worst case scenario to me and I thought to myself that I would rather die than than have my colon removed and live with an ostomy (a 20 something thinking), but in the end, when push came to shove I knew that it had to happen and accepted it. Good luck.

    • @insertmyidentityhere
      @insertmyidentityhere 8 місяців тому

      I don’t know how someone could be truly healthy without the colon, that’s where all the bacteria and flora are… your microbiome determines your health…

  • @marklafollett4033
    @marklafollett4033 2 роки тому +1

    I just got diagnosed today. It’s been 3 days of get off the toilet. No energy, hoping the meds will help. Absolutely great video. Great information!!!

  • @travisjones4349
    @travisjones4349 2 роки тому +1

    Really good video. Ever since I got diagnosed with left-sided colitis, it has impacted every aspect of my life way more than I ever thought it would. It gets super discouraging having to use the bathroom every 15-30 min. I wish doctors would explain this to their patients the way you did. I plan to take more precautions, eat healthier, and stay on top of whatever meds I may need to use because I'm afraid of missing out on so much in life. This disease can be so controlling. My heart truly goes out to everyone who's struggling with it as well. God bless.

  • @markturner1292
    @markturner1292 2 роки тому +4

    Great video. I have UC at age 51. There are many treatments. So far Xeljanz works for me. With that I’m 99% better. But yes, before the meds every place you went you had to know where the bathroom was.

  • @fattsmcgee5686
    @fattsmcgee5686 3 роки тому +7

    Thank you for this video. My 20 year old son was diagnosed today. This was really helpful. I hope you’re doing well.

    • @rue1x25
      @rue1x25 3 роки тому +2

      I’m 20 was diagnosed at 18 but I know your son is strong he will get through it

    • @rue1x25
      @rue1x25 2 роки тому

      @@alfredeinstein1742 fatigue painful bloating stomach most of the time blood in stool nausea and pain in lower abdominal

    • @rue1x25
      @rue1x25 2 роки тому

      @@alfredeinstein1742 yes diet is the best thing

    • @rue1x25
      @rue1x25 2 роки тому

      @@alfredeinstein1742 don’t try to rely on medication to much trust me.

    • @rue1x25
      @rue1x25 2 роки тому

      @@alfredeinstein1742 yea like anything bro

  • @ellebelle8515
    @ellebelle8515 Рік тому +1

    Well done. This is one of the best videos I have seen that explains all facets of the IBD. Very helpful. Thank you.

  • @MossStreetGallery
    @MossStreetGallery 2 роки тому

    Great video - I was just diagnosed with UC and your video was super informative. Thanks you.

  • @YakobtoshiNakamoto
    @YakobtoshiNakamoto 2 роки тому +5

    I’m 28 and just been diagnosed with mild UC. Just completed an 8 week course of steroids and hopefully it does seem to have reduced inflammation. I also had the fatigue and anaemia so can totally relate to nearly passing out just walking to the bathroom, it’s horrible! I’m just trying to learn as much about UC as possible so thank you for this video, it helped a lot!

    • @queenofcamp832
      @queenofcamp832 2 роки тому +1

      My boyfriend got diagnosed nearly 2 years ago. He did the 8 week course of steroids too and has been on mesalazine ever since. His flare ups are very rare now (maybe 3 a year) and they aren’t anywhere near as bad as they used to be. I hope you’re coping as well as you can with it.
      One piece of advice I’d give is don’t listen to anyone telling you there’s one solid answer to all of this. We tried several different diets with my boyfriend but nothing seemed to make much difference so it didn’t seem worth the hassle. He eats whatever he wants, trying to be as healthy as possible, and just listens to his body. If he has a flare we think if he ate anything unusual recently that may have triggered it and try to find patterns. Everybody’s different so take your time with it and go easy on yourself :)

    • @sheebaahmad4830
      @sheebaahmad4830 Рік тому

      Steroids has too much side effects. Didn't you noticed any side effects with taking steroids

    • @moeslim3
      @moeslim3 Рік тому

      I was diagnosed with infectious proctitis and I’m already 28! I’m already scared it’s gonna spread more! 😢

    • @amitpalbains9361
      @amitpalbains9361 5 місяців тому

      @@sheebaahmad4830side effects are typically long term use. Typically if they give you steroids it’s very short term. If you take it long term not only do the side effects kick in, the relief you get decreases as well because your body starts getting used to it.

  • @BubblesSis
    @BubblesSis 4 роки тому +5

    I’ve had UC for 10 years and because I was diagnosed at such a young age, I was never interested in knowing much about it. Thank you for this simple yet informative video!!

  • @1aliassmith
    @1aliassmith Рік тому

    You did a really great job explaining everything and you were interesting and easy to listen to. Thank you so much! I learned a lot.

  • @marcuspeart6196
    @marcuspeart6196 Рік тому +2

    Thank you for this video. It's 3:30 am and I was just diagnosed a few weeks ago. I'm struggling to eat and the bleeding is extremely constant. I just want to be ok and help people. I'm a nurse aide and there is no way for me to do that job in this condition. I feel so trapped. Thank you for making this video and making me not feel alone.

  • @wisetow10
    @wisetow10 3 роки тому +5

    This breaks my heart. I dealt with severe Crohns for 8 years and it was the worse quality of life I have ever experienced. Somehow I came off of all my medications after strict diet and exercise including running. I know that sounds crazy because it seems impossible during flares but I was in do or die mode. So often times I wished I would die rather than live that way. Continual bleeding and pain. So after roughly 5 years of remission, I have let my diet go, gained weight, stopped exercising, and currently going through a divorce, I’m convinced the stress got me back to here. So back to putting in the hard work of doing all I can do to be the best me I can and hope for the best. Asking for all of your prayers and I will def be praying for you. Anyone who has ever experienced this knows that it’s no joke. However there are way more of us out there than you may realize. Keep your head up the best you can and treat your body well. Love all of you!!!!! Get well soon.

    • @ronniethornley5578
      @ronniethornley5578 3 роки тому +1

      Thanks for sharing. I know the pain all too well, every morning I feel like I’ve been hit by a train in My abdominal area. And the frequent bathroom trips are crippling, as well as the accidents that can and most likely WILL occur if you have this terrible disease. I’m so sorry for all the stress you’ve been going through it def makes things much worse, as I am too going through some hard times. Stay up, I’d say I would pray for you but i forget to pray even for myself lol. I’ll try and remember. Keep up!

    • @sleventysixty7488
      @sleventysixty7488 3 роки тому +1

      hi did you use medication to go into remission then change your lifestyle or did you achieve remission soely without meds

  • @anniecartwright1906
    @anniecartwright1906 4 роки тому +5

    so informative, thank you!

  • @cindydaugherty7689
    @cindydaugherty7689 Рік тому +1

    Great informative video. I am 70 and was diagnosed two days ago. You were thorough and spoke slowly enough I could process the information.

  • @jaznicole8
    @jaznicole8 Рік тому +1

    Thank you for making this video. My Daughter who is only 18 was just diagnosed a few weeks ago. It has been extremely difficult watching her go through this. She has been in bed for a straight week. I’m trying my best to have her get up and move around but she has no energy. We are seeing the doctor today to discuss her symptoms. I’m hoping things start looking up very soon.

  • @smidel
    @smidel 2 роки тому +22

    I’m 13 and I was diagnosed with UC when I was 10 and I’ve jumped between so many medications. It’s pretty overwhelming sometimes and it hasn’t gotten better, my gastroenterologist says that I’m the first of his patients to be on this special $4,000 medication every 4 weeks so I hope it does the job and I can get to a stable place and not have to worry about getting chunks of my intestines cut out.

    • @dthomas6739
      @dthomas6739 2 роки тому +4

      So sorry...I pray to God that healing come through for you. I was 30th when I was diagnose and like the video said, they don't give a good explanation. Now i am 67th and after a good years along with med, this time gotten more aggressive but, I am still trusting God and that this shall pass and we'll get better soon.
      God bless you.

    • @thrashncrash4046
      @thrashncrash4046 2 роки тому +2

      I was diagnosed with Ulcerative Colitis at the age of 15. Now I am 37 year's old and still deal with it. Hang in there it will get better for you. Never let this disease get you down.

    • @DrissLeDriss
      @DrissLeDriss 2 роки тому

      Im 13 aswell and i have all of the symptoms of IBD. I hope i don't have it

    • @zzbug17
      @zzbug17 2 роки тому +1

      I feel you. Ive had huge stomach aches sense i was 6 and everyone told me i was overreacting and i was stressed so i just took tylenol constantly. in 2020 of august it got miserable, couldn’t eat and dropped down to 57 pounds. In december they finally took me serious and i got a colonoscopy. Found out i had severe uc. I was originally given an option of a infusion or the humira shot. I did humira (and i dont really think it did much). Eventually they gave me a pill of mesmaline! That helped…but it doesn’t go as far as it needs. So they gave me they gave me a choice between another pill or mesmaline that goes the other way. I chose the pill asap!! But… they gave me the mesmaline because they thought it would make me better. That’s where i am right now, i’m hiding so i don’t have to do it. I feel like it’s NEVER going to get better and i’m wondering why they think this is better? It just brings me more pain.

    • @Xuevium
      @Xuevium 2 роки тому

      @@zzbug17 - Hey there, Zuri 👋 my name is Kel and I have very bad Ulcerative Colitis with bleeding and severe stomach cramping and pain. Please do Not just hide away. I am on the max dose of Mesalamine, taken daily, and even though i have always been extremely sensitive to all drugs, the Mesalamine does not even give me any side effects at all.. and that is a miracle, and it Does work! But just remember that it takes time... typically numerous weeks of taking it daily before you see the good results. The key is starting it asap, and staying on it. And if you are in the middle of a bad UC Flare that will not stop, then they need to give you a second med as well, like Prednisone or Uceris rectal foam. I highly recommend Uceris foam, if you can afford it, or get your insurance to cover it. I really hope that you get better soon and find relief. I know first hand about suffering terribly from this disease, to the point where I did not want to live anymore. Getting on, and staying on a combination of medications is Nessesary for this disease.

  • @yeetomosquito8904
    @yeetomosquito8904 3 роки тому +2

    Thank you for sharing this stuff. Even though my doctors and nurses explained it well, it kinda meant more and I got a better understanding when it came from a person with uc, does that make sense lol. My disease rn is moderately active and I have a ways to go to recover. It’s nice to see someone talk about this and put it on UA-cam for people to easily access, thanks

    • @yeetomosquito8904
      @yeetomosquito8904 3 роки тому

      @Marian Cook actually there is no cure for uc or any other forms of IBD. It’s called a "chronic" illness for a reason. Chronic by definition means continuing or occurring repeatedly. I think you may have been scammed. Flare ups come and go, so it may just have been awhile since you’ve had a flare up. (I am not in any way trying to spread hate, I just wanted to let you know)

  • @cristinagonzalez8172
    @cristinagonzalez8172 Рік тому

    Thank you so much for your video. My son, 20 years old was diagnosed with ulcerative colitis 2 years ago, so we still learning about this condition. Thank you for sharing your experience.

  • @paz1798
    @paz1798 Рік тому +1

    Thanks for posting this video. Hope Effie is doing OK atm

  • @pacopeso8474
    @pacopeso8474 3 роки тому +3

    My friend had ulcerative colitis in 1971 and had to have a colostomy installed in 1972. He is doing well and I learned from his condition.

  • @jocelynleon5827
    @jocelynleon5827 4 роки тому +9

    Thank you so much! I just had a flare and it’s so hard to make people understand what UC is

    • @Thanos-lx9vi
      @Thanos-lx9vi 3 роки тому +3

      Its difficult bc I dont know how to tell people i bleed when i poop. It’s embarrassing

  • @MrSensational21
    @MrSensational21 2 роки тому

    Newly diagnosed and definitely nice to hear others talk about it

  • @msamuel1964
    @msamuel1964 3 роки тому

    I had a colonoscopy was diagnosed with proctitis, anaemia and had polyps removed. The consultant had a 2min chat with me while I was still on the table, I don't remember what he said. I was given a pack of information sheets and a prescription for pessaries and liquid iron. I was also told by the nurse the IBD clinic would be in touch, no one has. That was almost 6mnths ago, I've only just gone back to work since I've been floundering about the internet ever since trying to understand the disease and how to come to terms with pooping myself with zero warning. This was very informative, thank you.

  • @val71999
    @val71999 3 роки тому +5

    thanks for explaining it to me better than my doctor did... omg

  • @mavernicasimms4856
    @mavernicasimms4856 3 роки тому +14

    I'm living with ulcerative colitis for the pass 20 years and to be honest I don't understand anything about it my treatment don't really works I just wish their was a cure going to the toilet so often is more than I can bare I feel like I will never be normal again I'm praying the Lord will send a cure soon

    • @jabingox772
      @jabingox772 3 роки тому

      @@payalchauhan9638 which medicines do you take?
      Lately I take digestive bitters, digestive enzymes, potassium, l glutamine, zinc carnosine, probiotics

    • @jabingox772
      @jabingox772 3 роки тому

      Did you try tweaking your diet?
      Any food intolerences, low carb/hi carb, low fat/high fat, elimination diets, etc?

    • @lyt_w8t
      @lyt_w8t 3 роки тому

      @@marechell66 I gave up smoking tobacco like 5 years ago but honestly still smoke a small bit of the waccy baccy every day

  • @borislum1998
    @borislum1998 Рік тому

    thank you for your honesty and making this video. it is so informative. all the best with your UC management. you are a very good videographer.

  • @youmou50
    @youmou50 3 роки тому

    Oh Wow !! Thank you so much for very important video ! wish you all the best

  • @jessicapustizzi9992
    @jessicapustizzi9992 3 роки тому +10

    I probably have this. I was just in the hospital for a day for tests. thank you so much for this it really helps me learn about it

    • @michaezell4607
      @michaezell4607 3 роки тому

      I was in the hospital back on wednesday for terrible nausea and vomiting and after having an abdominal CAT scan they confirmed a diagnosis of acute mild colitis and am just now only starting to recover as I'm now at least able to eat apple sauce in small amounts without throwing it up almost immediately. Even though I appear to be getting better I'm terribly afraid of getting worse at any minute.

    • @TheChrislewis1989
      @TheChrislewis1989 3 роки тому +2

      You'll know if you have it. It'll hurt really bad and feel like you're constipated even if you don't have to go. It sucks! Good luck and hope everything turned out all good!

  • @Matt7loc
    @Matt7loc 3 роки тому +3

    Thank you I just got diagnosed with this and I was tripping out about it

  • @pgrieger
    @pgrieger 3 роки тому +1

    I watched twice and learnt more...again. Our NORMAL life is a blessing and we have this illness because we are strong enough to live with it. My BPD and ADHT are helping me to be distracted but I wish my life could be explained to make sense like this video. I would write a book or make an epic film about my life❤

  • @lindsymichele
    @lindsymichele 2 роки тому +1

    Such a great job of teaching about UC. I’m a nursing student n this was super helpful!!