Welcome

Hello. I’m Thaila. Nice to meet you!

many faces of thaila skye

Here are some facts about me:

  • I am 30 years old, although I feel ten years younger.
  • I live in Peterborough, England
  • I am in remission from having stupid Crohn’s Disease (diagnosed in November 2009)
  • I have two stomas – one ileostomy and one colostomy (surgery was in March 2010)
  • I am addicted to tea. Seriously.
  • I married a lovely chap called Chris (in September 2014)
  • I spend a lot of time watching videos on YouTube, researching my family tree and collecting sunsets.
  • I’m dedicated to raising awareness of IBD, and reducing the stigma around ostomy & bowel-related conditions. I was honoured to appear in the second series of Joseph Gordon-Levitt’s Emmy award-winning series hitRECord on TV in 2015 where I was able to spread that message further afield.
  • I am obsessed with many TV shows (mostly Sherlock and Red Dwarf) and refuse to apologise for that :)

For the whole story about my Crohn’s disease and ostomy surgery, you can read all about it in the About Thaila page. You can learn more about my ostomy YouTube series called Ostomonday, too.

Also, remember to visit my blog for the latest updates about my life!


Thanks for stopping by!

Digiprove sealCopyright protected by Digiprove © 2014-2016 Thaila Skye
Acknowledgements: Icon made by Freepik from www.flaticon.com

21 thoughts on “Welcome

  1. Hi Thaila, in june i had a full proctocoletomey due to being very unwell and in and out of hospital for the last two years, i still have some side effcts from the crohns but a much improved lifestile, the bag has taken a bit of getting used to and i have found your youtube clip very reasureing, many thanks and all the best to you, have a very happy christmas, kind regards , Clive

  2. Thaila, You are a very beautiful young women. I live in America. California to be exact. I am 51 years old. I have had an ileostomy since 1986 due to ulcerative colitis. I am so thankful for social media so that awareness can be brought to this gift of life. I do not have a website but I am on Facebook. I accidentally found you on YouTube searching for another video. This was a happy accident as I viewed all of your videos. I obviously don’t know you but feel proud of you! That said I now have a new ostofriend. Search Donna Flowerdew on Facebook. ps Congratulations on your wedding!

    1. Hi Donna, thanks so much for the lovely comment! I’m glad you enjoyed my videos :) Feel free to head over to my Facebook page and give it a like, as I post on there from time to time! Thanks again and have a lovely day!

  3. Hey Thaila,
    I’ve been following posts by yourself and Nicholas Brookes for some time and wanted to say ‘Hi’.
    I’m 29, from the UK and had a ileostomy fitted just over 9 months ago after losing the fight with Ulcerative Colitis.
    9 months later and I still hate it with a passion. My girlfriend, friends and family have been incredibly supportive but I can’t tell if I’m being really slow to adjust or just feeling sorry for myself?

    I’ve never met or spoken to anyone with a ‘bag’. I followed a few groups on Facebook a while ago that were full of people with terrible, awful stories and social issues caused by the illness, which led me to burying my head in the sand.
    But the positivity in all your videos and the couple I’ve seen from Jack Atkins have completely blown me away. I know yours was kind of forced on you in an emergency but did it take you a while to adapt?
    Thanks :)

    1. Hi Scott,
      We’re the same age! Hoorah for us young kids :) I’m sorry to hear you’re still struggling to adjust to life with an ostomy. Honestly it’s a very individual journey; some people accept it straight away, some take longer. At first, I hated it, but as soon as I started to recover and was able to gain weight and feel more energetic and less ‘poorly’, I realised that it was the best thing to ever happen to me. I had a long recovery (10 months off work) but as soon as I was recovered I was practically bouncing off the ceiling because I was happy to feel more myself again, rather than the sick patient I had become. Like I say, it depends on the individual – there’s no right or wrong way to feel. I just hope that my videos can help even just a little bit :) If you ever need to talk things through, you can email me. I may take a while to respond, but I WILL respond :) The details are on the Contact page :)

      1. Im struggling to adapt too. Im 16 and live in the Uk. You and Jack Atkins have really shown me that every thing is still possible with an ostomy. But because I am young I feel my peers wouldn’t understand. But I have struggled with IBD throughout the last two years and missed 75 percent of school. But I passed all 9! 2 As, 5 Bs and 2 Cs. I am staring a new college and need some tips on being confident in myself and my bag xx

  4. Hi Thaila!

    I just want to let you know how great you are.
    Thank you for the help you give to people!

    Hugs :) Anett

  5. Hi Thaila. First I have to say how much I admire you for your so positive attitude, and for your blogs and videos.
    I was ‘given’ a Stoma as a result of an ileostomy in February (I have a cancer in the bowel), and I hated the Stoma with a vengeance. For months I battled with it as pouches leaked for a hobby. I would frequently have to change the pouch up to four or five times a day, taking up a large part of my waking day, and causing havoc with my skin. Sometimes it would leak within only a couple of minutes. Keeping it on for twelve hours was a rare and huge treat. It ruled my life, preventing me from going out as I was never confident it wouldn’t leak. The Stoma nurses told me that mine was the most difficult they had ever dealt with.
    I tried everything recommended by the nurses. I started with a standard one-piece pouch. Then we tried different one-piece pouches, with and without cups, and two piece with belts. I finished up with a high-output one-piece bag. It leaked all the time. I started using seals. Still leaked. Larger seals. Leaked. Powder to dry the skin. Leaked even more. Paste. Leaked. Flange extenders (four). Leaked. Adhesive spray. Leaked. All the possible variations and combinations of the above. And boy was I so fed up and depressed.
    A few weeks ago my Stoma nurse said there was only one thing we hadn’t tried, a different pouch. It’s a two-piece high-flow pouch without a cup. From the start it worked so much better than I even hoped. I use it just with adhesive spray and (only) two flange extenders. None of the rest of the paraphernalia. It takes me half the time to change, and now I can keep one pouch on for four days (!), changing it at a time of my choice, when my Stoma is relatively inactive. Oh, the other thing I do is use a small travel hair drier to ensure the skin is bone dry, and then of course I use a barrier wipe.
    Thaila, I can’t tell you adequately how much my life has changed over these past few weeks. I can go out and about confident that it isn’t likely to leak, though I take my emergency bag wherever I go. I never dreamt it could be so dramatic, and I’m sending this in the hope that it may help someone else who is suffering as desperately as I was. It was a truly miserable existence, and I literally frequently wished it could all be over; I didn’t want live like that. Today I don’t have to, and my message to others is not to give up hope. Nag your Stoma nurses, seek second (or third or fourth) opinions from other Stoma teams. Try everything. I can’t, of course, guarantee there is a solution for everyone, but if the ‘owner’ of the most difficult Stoma in West Berkshire can find one, there’s hope for everyone.
    God bless, Thaila, and keep up the good work.
    Jack

    1. Hi Jack, sorry for the late reply – only just saw your message! I’m so glad to hear that you’ve now settled in to a good routine for you! It’s good to know that you’re helping others too! Thank you so much for the lovely comment and I hope you had a lovely Christmas and that 2016 is awesome for you! :)
      – T

  6. Hi, I’m a bowel cancer survivor now with an Ileostomy and your videos have been really helpful. I just wanted to thank you for going into so much detail.

    Lee

  7. Hi thalia
    I recently had a permanent ileostomy and protecting and was wondering with your experience whether you wear support underwear from the ostomy companies as I was told I should wear it to prevent hernias. The undwear is like a wet suit (lol)

    I love your you tube videos and have had great support/comfort from them the past few weeks.
    Thank you

  8. Hi Thaila, it was great to find your video on facebook this morning, it’s fantastic that you can get out there, and share your experiences. Like you, when I first had my op in in 2012, I didn’t want to look at it, but before I left hospital, I had taken to `Tim` like a duck to water, yes, I’ve named my stoma Tim :-) :-), then in 2014 I had my rectum and anus removed. I suffered with ulcerative colitis, and it had taken over my life, then it became a matter of life or death so to speak, I might not have been here, had I not been advised to have the op, so Tim saved my life. I look forward to seeing more of your blogs. Take care brave girl xxx

  9. Hi Thaila,
    I just wanted to say thank you for all you do. My UC has recently got much worse and my body stopped responding to the meds the way it used to. I’ve been dreading my appt. with my Gastroenterologist in case she says there’s too much damage this time and removing my colon is my only choice. An ostomy felt like the end of the world.
    I discovered your youtube channel when I was doing some research and I feel you lifted a weight off of me. Like a beacon of light telling me it’ll be okay, so thank you x.

    1. Oh wow! Firstly thank you so much for the kind words! I certainly feel that it was the best decision I could have made and life with a stoma isn’t limited at all – in fact, it’s given me my life back! Have you had your appt yet? Would love it if you kept me updated on your journey!
      Best wishes,
      – T

      1. Sorry, I just saw you replied!
        Appointment was on Friday and it went pretty well. I’m now on a new course of medication to hopefully get things under control. I think because I’m young she wants to keep surgery off the table for as long as possible, but I’m honestly starting to feel like unless we can to find a way completely treat it with meds, surgery might just be better. Or maybe I just feel like this because I’ve had a bad day, and when things get better I’ll change my mind!
        Either way, stoma or not I’ll definitely keep following you, I adore your videos, keeping up with your life through the vlogs has been lots of fun, and I’m looking forward to the Lindy Bop look-book! x.

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