Now U C me…

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Here we go..

When I was chosen as the 2015 International Rose of Tralee, I made the conscious decision to be completely transparent & utterly honest about my cancer journey which began when I was diagnosed with hodgkins lymphoma at 19.

I was overwhelmed & moved beyond belief by the outpouring of support, love & most importantly taken aback by the many young people coming forward who had gone through a similar situation. My first letter I received as the Rose was from a little lady called Aoife in 6th class from Co Cork who had gone through lymphoma too. She wrote me of how she was inspired by my story & couldn’t wait until her hair grew back like mine had. This to me, was everything.

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Once again, now at 23.. I find myself in the face of illness. This June, a chronic disease by the name of Ulcerative Collitis came knocking at my door. Three and a half years after I had kicked cancer out.

For those of you who don’t know (which included myself up until this summer) Ulcerative Collitis is an autoimmune inflammatory bowel disease in which your own immune cells attack the cells in your colon (which you kindof need to lead a normal healthy life)

Dignity and any sense of self consciousness were quickly forgotten when the symptoms became so bad I was admitted to hospital this week for 8 long, challenging days. Symptoms of UC can include severe crippling tummy pain, running to the loo one too many times a day to mention, losing blood, feeling tired & lack of interest or wanting to eat. I had lost 3/4 of a stone & my body was in starvation mode. I was afraid to eat for fear of feeling sick after & suffering with the pain.

After a few days in hospital being treated with lots and lots of steroids and fluids I developed what’s called “refeeding syndrome”. You know the ole saying “you don’t know what you got till its gone” for me this week that was POTASSIUM.

From constant blood tests, blood gas analysis (this one is particularly ouch), X-rays, ultra sounds,Echos, ECGs,Scopes, antibiotics, steroids, talks with a dietician, being poked and proded, constantly being hooked to IV fluids and electrolyte replacement.. The days seemed to go on for decades & home seemed out of reach.

Between my UC consultant, my oncologist, a second opinion & myself , we together agreed that starting a biological drug called Vedoluzimab was my best option to avoid major surgery to remove my entire colon (the sheer thoughts of it even make me shudder)

I started this drug on Friday & was genuinely more scared with this infusion going into my veins than I was getting chemotherapy. Maybe it’s because I know more now about side effects & all the weird & wonderful complications from my medical studies? I will be on this drug for the foreseeable future as we try and kick this UC into remission. It’s a relatively new “wonder” drug and basically it’s action is to dampen down your overactive immune cell response to all your poor little colon cells that are getting absolutely battered. I’m back in 2 weeks for another go of Vedoluzimab, then 4 weeks, 8 weeks and so on…

How do I feel now? Happy & thankful to be home. Reminded of the value of the simple things in life like seeing your dog and sleeping in your own bed. Determined to tackle this head on. After missing so much teaching in college & study time I’m hoping to still sit and pass my exams coming up. Grateful to my INCREDIBLE family, boyfriend and best friends who were by my side throughout the whole week for all the ups & downs, twists & turns… And by god there were many!

I have had a lot of time to reflect this week & being 100% honest with you , I have had those moments of “why me”. Why do I have to go through this? How is this fair? Have I not fought my battle & carried my cross? After my little wobbly & feeling a tad sorry for myself, the fighting spirit that was embedded & instilled in me at 19 kicked in. It was 4 years ago when I discovered what it means to dig deep, gather your inner strength & fight like hell. I refuse to let circumstances define me or who I am in this world. I have far too many things to do, places to see & experiences to have to let this to stop me. I believe with all my heart that every experience (good & bad) holds within it a blessing, room for learning & growth.

When I was first diagnosed with cancer, one of my best friends Lisa and I created a bucket list at the start of my treatment. Everything on it became true and possible (much to Lisa’s suprise.. she was convinced I’d never get my driving license).. Including one day becoming a Rose. So on Friday when I started the Vedoluzimab infusion, with Lisa by my side..we created another list.

“The future belongs to those who believe in the beauty of their dreams” – Eleanor Roosevelt.

Also credit & shout out to Dr. Olaf (pictured above) for being by my side throughout.

One of my aims from this bucket list (2.0) is to use this experience to spread some goodness & share a positive message about being a young person & dealing with illness, whether it be mental, physical or emotional. We all have struggles which are relevant to our own lives, struggles which we CAN get through. This just happens to be mine.

My goal over the next few months is to undertake a journey back to sláinte agus sonas ❤️

Watch this space…

EB

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42 thoughts on “Now U C me…

  1. Driving back from visiting friends and just read your blog. I hope that u r on the path to recovery. A friend of mine suffered from UC in her 20’s and now lives a very happy healthy life and I know that you young lady will do the same. Your family, attitude, approach to life and your spirit will always help you through these tough times. Always in our thoughts. Sonya, Harry and Dermot. Xx

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    1. You probably don’t remember us but we met you at Longford railway station you were returning from some event you sat opposite us on the train and we never stopped talking till the train pulled into Heuston, we were saying our goodbyes when you presented my wife |Breda with a beautiful bouquet of flowers which had obviously been given to you sometime earlier, it was the act of not just a lady but someone with great heart and decent upbringing
      Breda and I had been down to visit Mels Cathedral which is so beautifully restored, we both pray your health will also be fully restored, you left a lasting impression on two old age pensioners, you are a very beautiful young lady, but more importantly you inner beauty glows and touches those who come in contact with you.
      We can only say God bless and protect you and we promise you will forever be in our prayers
      Love and best wishes from Fred and Breda.

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    2. Hi I too have ulcerative colitis got total Colectomy at 24- the medicines just didn’t work and was diagnosed at 18. I’m now 29 and can’t believe how my life of sickness was alleviated by having surgery – the ileostomy bag Is there and just like any other part of my body. So much so my body confidence sky rocketed which I like you shuddered at thought of having a bag. But after years of hospital admissions no other option was available. I hope your uc responds to the meds but if it doesn’t don’t fear the operation as I did. Life definitely goes on

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  2. I don’t normally comment on blogs /posts but I think your positivity is amazing given everything you’ve had to deal with . Your bravery and outlook is immense. I wish I had half of your strength.
    Keep fighting , good things are just around the corner xx

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  3. Elysha – thank you for sharing such a personal insight. We can all learn something from it. Your determination is truly inspirational. XXXX

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  4. Elysha, I watched a documentary last night on YouTube called Super Juice Me by Jason Vale. It’s about eight volunteers with various medical conditions who embarked on a 28-day juicing plan, one of whom had UC. The results were amazing. It’s worth a watch. Get well soon. xxx

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  5. Elysha,
    Read your story, sorry you are getting it so tough 😦
    We live in a world where immune dysregulation, especially the overactive immune system, seems rampant. Its especally rampant in first world countries, perhaps in line with the hygiene hypothesis. Since you suffer from an overactive immune system, Im sure you would be fascinated to read a book that traces the arc of this problem called “An Epidemic of Absence” by Moises Velasquez. Perhaps you have already read it. It is a complete marvel imho and an absolute must read for anyone with immune problems. In short, our microbiomes, which contain so much of our immune system, have lost their diversity due to longer having the incoming bacterial diversity and stimuli that act as tensioners on the immune system, and with which the immune system evovled, so that now its spinning out of control for a lot of people.

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    1. You probably don’t remember us but we met you at Longford railway station you were returning from some event you sat opposite us on the train and we never stopped talking till the train pulled into Heuston, we were saying our goodbyes when you presented my wife |Breda with a beautiful bouquet of flowers which had obviously been given to you sometime earlier, it was the act of not just a lady but someone with great heart and decent upbringing
      Breda and I had been down to visit Mels Cathedral which is so beautifully restored, we both pray your health will also be fully restored, you left a lasting impression on two old age pensioners, you are a very beautiful young lady, but more importantly you inner beauty glows and touches those who come in contact with you.
      We can only say God bless and protect you and we promise you will forever be in our prayers
      Love and best wishes from Fred and Breda.

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      1. Hello Fred & Brida!
        I remember the train journey so fondly. And the great chat & laugh we had . I shed a tear reading your beautiful message you have no idea how much your kind words mean to me.

        Lots of love to you both xxx

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      2. Hi Elysha, thanks for your reply, after we said our goodbyes on the train we spoke about you all the way home, I don’t mean to embarrass you but it was all good of how beautiful a person you were to two old codgers and the bouquet of flowers just knocked us out, needless to say we told everyone about meeting you on the train from Longford to Dublin.
        Breda has her special little prayer book and in it is people she prays for every morning at mass you of course, are one of the entrants. Keep well we think you’re fantastic.

        Fred-Breda

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  6. Hi elysha read your blog and in some small way can emphatise with you but I wanted you to know that some 35 years ago my dad was diagnosed with UC and refused a colostomy and instead took to a rigid task of tablet taking and can I say he recently celebrated his 87th birthday and this Thursday he will be 60 years married !! He believes that where there is a will there is a way so please believe ,you are young and beautiful and I wish you every best wish for your recovery . Cheers

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  7. Hi Elysha,
    I also, very recently, started on Vedolizumab, going for 2nd infusion this Thursday. Really interested to read your blog and see how you’re doing with it. Best of luck, fingers crossed it works for both of us!

    Jen

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  8. What a great idea to share this in a blog- this is the definition of making the best of where you find yourself – all we can ever hope to do – and hopefully it will end up helping others (& you too!)Your courage and openness are a real inspiration, Elysha Good luck with fighting this illness- I promise to say a prayer for you.

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  9. Hi Elysha,

    As a fellow UC suffererer for the past nine years I know exactly what you’re going through. I hope and pray this drug works for you. It’s all relatively new for you now and overwhelming but over time you will learn to control this disease and not let it control you. Yes, it’s annoying and it’s always there. You will have good days when you can do can do everything and bad days when you can do nothing but you just carry on. I have been very lucky and have so far been able to carry on pretty much normally. On treatment all the time but in remission for the most part. I have had my two beautiful girls through ivf and have been able to work all the time aswell. I wish you every best wish and thank you for your honest account of this debilitating disease.

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  10. Hi Elysha, I can see why you’d be asking ‘why me’, after the year you’ve had, to finally be getting back to life and then UC strikes! Perhaps your Rose year will help many thousands, once you take the time to help yourself of course, by raising awareness to UC/Crohn’s. They are so undersold as having a ‘bad tummy’, but they are life changing and sometimes unending! My husband has had Crohn’s for 20 years and is having more surgery in the next few weeks. One of the biggest challenges is people accepting what you can and cannot do when you sometimes look well but feel awful……Wishing you good luck with your treatment, and speedy return to good health, Bernie x

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  11. Hi Elysha,

    So sad to hear that you’re not well again. Will never forget the laughs we had down at the Rose of Tralee festival this summer, in particular the Fashion Show! You are an amazing person as I feel blessed to have met you. I look forward to seeing you regain full health soon and enjoying the rest of a long happy and healthy life! Your inner strength, positivity and determination will always get you through the tougher times. Please send my love to your Mum & Sis!

    With Love & Best wishes,

    Your Friend,
    Karen (TC)

    Ps Hope your studies are going well, you’re going to be an amazing Doc! 💕

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    1. Hello Karen! So good to hear from you.
      Hope you are keeping well.! Thank you SO much for your kindness and encouragement! Saw you looking absolutely beautiful in the background of the Saturday night show!
      Hopefully our paths will cross and we will see eachother soon.
      Sending all my love to you & your beautiful family! Hope all the kids have settled well back into the school year.
      My mum & kate send all their love too. Such wonderful memories of the year especially us strutting the catwalk and improvising at the fashion show while lusting over absolutely every dress & you rocking the orange creation!

      See you soon.
      Lots of love,
      Elysha

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  12. HI Elysha, I just read this via a link that Olga shared on FB. It is so admirable that you were able to detach from your suffering to write such an eloquent, touching and inspiring post. Keep that fiery spirit fuelled and nourished. You will get through this. Warmest wishes, Siobhán

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  13. Hi Elysha,
    I just came across this via a link that Olga shared on FB. It is so admirable that you have managed to detach from your suffering to write such an eloquent, touching and inspiring post. Keep that fiery spirit fueled and nourished, and keep dancing with life. You are doing great, and you will definitely get through this. Warmest wishes, Siobhán

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    1. This complaint is so debilitating I hope you wont mind if I give U a possible cure. For one week take a salt drink night and morning. At thenight time drink be fasting for a few hours before bedtime and take it last thing. Morning drink should bw taken first thing and fast for an hour or more before taking light breakfast e.g. scramblwd or boiled eggs and white toast and butter. No whole wheat at all. Second week usung the same ritual but substitute codliveroil (tablespoon) again for one week. See how this works but keep away from any coarse foods eating lightly on chicken breast roasted etc. Lots of veg like cauliflower carrots parsnips sweetpotato etc. Lots of live and good wishes for your good health.

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  14. Hi Elysha,

    Hope you’re well and making a good recovery. I never respond to blogs / articles but this time I had to . I know exactly what you are going through. I was diagnosed with UC just over a year ago and like you, I knew very little about it. I was in hospital for nearly three weeks and it was really tough. I lost over two stone and I was miserable. I, too, questioned why it was happening to me. I just just wanted to get back to my normal life. I’m on the infusions too and it’s completely fine. After a few weeks I started to notice a huge difference and I gained weight back. I would’ve been very active before the diagnosis and I love travelling so I wasn’t going to let it stop me. My life has returned to normal since and I have carried on like before. I’m working, hang out with family/friends, go out etc. I’ve been to Berlin, skiing in Italy, Morocco and South Africa within the last year and I did a couple of charity cycles too. The diagnosis gave me a whole new perspective. You start to appreciate the little things and not to take anything for granted. The UC is a part of me now but it most definitely does not define me. Give yourself to time to recover and you’ll be back in action in no time. Fair play to you for sharing your story. You’re an inspiration to many. Wishing you a speedy recovery.

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  15. Hi Elysha, I wrote to you back in October as I was starting vedolizumab at the same time as yourself. Just wondering how the drug is going for you? Unfortunately no major improvement here yet, I’ve had four infusions so far & Dr keeps tell me to ‘keep the faith’ so I guess that’s what I have to do. Hope you’re keeping well.
    Jen

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    1. Hi Jenny how are you? I’ve had my fifth round of vedo last week & im very grateful to say my tummy has settled & I haven’t experienced any major issues thank god & touch wood! I was quite unwell in hospital recently but it was my kidneys this time deciding to throw a tantrum! Sending you so much love & light. Xxxx

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  16. Elysha, you are awe inspiring! Forever graceful through all triumphs and tribulations that befall you! You are such a lady and I’m so sad to hear that that little body of yours is being a bold brat again! I don’t know if you were going through all this in Tralee but you were always so gracious and kind to us all, you were incredible!! You are in my thoughts and prayers xxx
    Love Mary Hick (rot team)

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