The IBD & Ostomy Support Show

For those of you that read my blog. You may keep seeing The IBD & Ostomy Support Show being mentioned. This show is something that I thought of as a mad idea. That mad idea needed to be pulled off. So, I got some lovely ladies involved and now a Steve and for the last 4 months things have been super crazy and the response to the show has been immense.

The IBD & Ostomy Support Show 

A little about me. I’m 31-year-old female with a permanent ileostomy and penetrating refractory Crohns disease. I have osteoarthritis, bile salt malabsorption and have endured 20+ surgeries and will have more later on down the line. I’m also a mummy to an amazing 7-year-old

We have Stephie who is a 30-year-old ostomate after her J-pouch failed due to pouchitis. She has Ulcerative colitis and is a lovely mummy with two delightful children.

Natalie is also a 30-year-old ostomate. She has Crohns disease, rheumatoid arthritis and Iritis. She’s also a lovely mummy to two lovely little boys.

Rachel is a 30-year-old ostomate. She is what we call a double bagger. She has both an ileostomy and a urostomy. This is due to Autonomic Neuropathy (Dysautonomia).

Finally, we have our newest member Steve. He is also has an ileostomy which is permanent and he faces his battles with Ulcerative colitis and now Arthritis head on. He is also a daddy to 3 boys.

The aim of the show

The aim of the show is to highlight, give advice, share experiences and cover all things within the IBD umbrella. We also have the Ostomy side, this covers all ostomies and the ways people got them as they are not all IBD related. We have cancer, nerve damage, freak accidents and many more medical reasons behind having an ostomy.

We aim to raise awareness and help others share their stories and gain confidence in themselves and wear their ostomy with pride and not hide in the shadows.

We also show that we can lead normal lives regardless of what we have been through. Positivity is stronger than anything and I think we are all true fighters and find the positive in any situation.

What we hope the show provides

  • Interactive medium of engaging with the community
  • Giving advice based on experience
  • Sharing stories from other community members
  • Building a library of community driven advice

We are in no way medical professionals and we will always advise you to seek medical help where needed.

What we have achieved in exactly 4 months 

4 months this Thursday the show has been running and I’m absolutely amazed at what we have achieved collectively.

  • Demographic so far is 35% male 65% female
  • Majority of viewers between 45-54 years old
  • Over 2300 views
  • Close to 100 subscribers
  • Other social media channels growing weekly

Our monthly reach combined is absolutely amazing and I nearly fell off my chair when the ladies sent me the figures. The show page on average is reaching 11000 per month and that is something we are incredibly proud of. We have always said even if it only helps one person then its more than worth it.

What we stand for

We all strongly believe that being sick is not a competition and every single person that contacts us matters. Behind the scenes we all spend so much time speaking to others and giving them time to speak and share their stories and do our best to boost confidence where needed. We share the stories of others if we have permission to do so. By sharing other stories and our own it makes the show more personal and relatable to those in the same situation as us.

We also have a respect for people wishing to remain anonymous. some people do not wish to share and prefer to watch and gain advice that way. We also understand that not everyone wishes to use social media platforms and that this is a new medium for those to gain advice and tips.

Guests we have had on the show so far

So, we have other advocates who also share their own journeys and what they have overcome and what they have done to help others.


Our very first guest on the show was the lovely Lauren Henderson who is the founder of The Purple Wings Charity, what this lady has been through and what she has done with the charity is absolutely fantastic. Lauren’s charity motto is Recover, Adapt, Overcome. This lady and her team work around the clock to meet new ostomates, provide grants for confidence boosters and run charity events to raise money to help those who most need it. We are very proud to say that Lauren invited us to speak at one of her events this weekend just gone. It was lovely to be with fellow ostomates and make friendships. Should you wish to see what Purple Wings is about I have provided the link here.


Richard Harris was our second guest. Richard is a fellow blogger and also runs #IBDhour every third Thursday of the month. Richard shared his reasons for setting up #IBDhour and his reasons for starting up his blog. He also shared his Ulcerative Colitis journey with us. I have provided the links here for Richards blog and his show. 


Sahara Fleetwood-Beresford, this lovely lady shared her journey with Ulcerative Colitis and living with a J-pouch. She is also the founder of #IBDSuperHeroes. She does a lot of events and raising funds for charity.


We have the next 3 months’ worth of guests planned. So please subscribe to our show channel on you tube and you will receive email notification when we are due to go live and as to who will be joining us for that particular episode

Our sidelines

Every single one us advocate for our separate illnesses. All of the show ladies write blogs, reviews and help on separate media platforms. Steve is an administrator across several Facebook groups and is always providing tips and advice. I have provided links below for everyone’s personal groups and blogs should you wish to read more about what we do combined.

I’m hoping this gives you an insight as to why the show was set up.  We are hoping to grow the show to help others and provide people with the correct advice and sharing other stories to prove all of you are not alone in your journey with IBD & Ostomy life.

Please feel free to leave any comments.

 

3 Comments
  1. Hi Louise

    I love the IBD and Ostomy Support Show and I currently don’t have a stoma only IBD. I started watching (usually the recording after the show) from episode 3, but for me it’s shown me that there are people who understand and I can laugh at the things you all mention that I’ve been through too that is funny after the time, but not at the time. For anyone else reading, its not just solely about ostomies so you’ll get a lot from the show even if you’ve not had a stoma. I know for me a stoma may be likely if my consultant doesn’t get a medication to work for me, but right now I’ve got so much out of watching and listening to you all each week. I’ve even emailed a description and link to certain shows to people who I think they’ll help. For only being diagnosed a year and a half and learning all of this, I’m so thankful to you all at the IBD and Ostomy Support Show because it’s support when many people around me don’t understand or have a clue but listening to you all, you certainly do and have been through so much yourselves, but you help to keep others going.

    Thank you so, so much.

    • Hi Elaine,

      I’m hoping you are well to a degree. Also hoping they get the medication to work for you as I know your not having the best of times at the moment. Thank you ever so much for taking the time to read the blog and I’m happy to see you have been watching. We are hoping that it helps people in their journeys and we make the show as relatable as possible.

      You made us all blush with your kind words. Thank you for sharing the show as well.

      Many thanks
      Louise xx

  2. Hi Louise

    Thank you and you’re all welcome. I don’t have anyone clos that really understands it and it’s so frustrating. I only know of people who know people with crohn’s or colitis. The show and finding your blogs came at the right time I think for me, as I was beginning to realise my crohn’s was for life with the vedolizumab starting and wondering if I’d ever feel somewhat better than I currently do. I found your blog by googling about vedolizumab as my GI Nurse had given me the NICE guidance sheet, but at that point CCUK didn’t have an info sheet for it, so I wanted to find out other peoples’ experiences of vedolizumab. I found your blog. I don’t do Facebook, but I do have twitter (@elaine__d) so I follow you all on twitter and read everyone’s blogs now. Loved to hear about the Purple Wings Ball, the photos looked fab. The IBD and Ostomy Support show is so supportive and probably more so than any of you realise. It’s been like therapy for me just knowing other people understand and are my age.

    Thank you so much.

    Take care

    Elaine

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