I just wanted to take some time out this week and talk about a venture myself and a few friends have started up; The IBD and Ostomy Support Show.
We host a show that is streamed live and then available for catch up once the stream has ended. It is every week and we have had 4 episodes so far and yes we have had some technical issues we have since smoothed out (or we bloody hope so!) But we are so dedicated to the show that I’ve done it whilst in hospital and the other show girls as I like to call them have done it on holiday, in caravans, at families or with just mobile data. The phrase “the show must go on” definitely applies to us because unless we have a prior engagement IE family or we are just so poorly we are off to bed medicated! But 8 pm even if we are a woman or two down we will always try to carry on!
Each week we as a group pick topics and ask the online community via support groups/ Facebook blog pages/ twitter and Instagram what their views are on the subject. The more comments and votes we get the better we can see how different things matter to different people. We make graphs but only only the answers received not on any other demographic but as the show grows that could be an option. So far we have talked about what products we use and how we change our appliances, stoma reversals and jpouches, body image and pregnancy, fertility, parenting with a chronic illness. This weeks topic is about charities and support networks with a guest spot from Lauren at Purple Wings Charity we are hoping to raise awareness for other charities too such as #GYBO, CCUK and The Breakaway Foundation.
So now I am going to talk a little about the Loose women of IBD and Ostomies!
First of all we have the brains behind the entire concept Louise who blogs at crohnsfighting. She obviously has Crohns but has Short Bowel Syndrome, Bile Malabsorption and Osteoarthritis. But has had two separate ileostomies and a massive amount of surgery. She is a mum of a gorgeous girl and has a very devoted partner. Louise talks very matter of factly with regards to what has happened to her and is the proud owner of some gallows humour! She is writing some mini series’ regarding different aspects of her journey so tissues maybe needed if you are a crier like me. Louise is very active on the online Crohns groups but especially with Instagram. She has a Twitter, Facebook page and of course an Instagram all under the name crohnsfighting.
Next is Natalie who blogs over at The Spoonie Mummy. Natalie is a mum to two little gentlemen and a step mummy to her boyfriend Ste’s little girl (yep Ste from #sickbutinvisible and what a cute couple they are) Natalie not only has Crohns and an ileostomy but she has had Arthritis since she was 15 months old, plus Iritis. Natalie is involved in a wide amount of groups and is always a positive influence in both communities, she is incredibly supportive to everyone. On her blog she talks about a wide range of topics that are close to her heart and her life, obviously she talks about her life as a mum with a chronic illness or three. Natalie is on Facebook, Twitter and Instagram as The Spoonie Mummy.
This is Rachel who blogs at rocking2stomas. Rachel has if you hadn’t guessed two stomas; first was her urostomy “squirt” and then came “bob” her ileostomy. Rachel has a condition that falls under the umbrella term Autonomic Neuropathy (Dysautonomia) which with the bladder and bowel failing is similar to Autonomic Failure and Multiple System Atrophy (MSA) – yes I did go to her page to double check I got the information right! Through having her ileostomy she has now been diagnosed with a type of Colitis too. Rachel is determined to raise urostomy awareness and posts incredibly interesting and informative pieces on her blog. She is active on Facebook, Twitter and Instagram with the name rocking2stomas.
This is Nic she blogs over at The Faulty Boweler. Nic is our little Scottish secret weapon at the moment and will be featuring more in the show as the weeks go on, but has been part of the show since the beginning. She has Crohns and an ileostomy, but her husband has Ulcerative Colitis and suffers with Coeliac disease, so she has a range of topics she talks about within Inflammatory Bowel Disease and diet. Nic is active in many different groups on Facebook and is always offering positive and practical advice where necessary. You can find her currently on Facebook as The Faulty Boweler.
Then last of all there is me! I blog over at Colitis To Ostomy. I had Ulcerative Colitis from being a preteen, had a jpouch at 21 without an ostomy; hindsight reminds me to say this is NOT a good idea, I then got Pouchitis and I have just recently had my first stomaversary. I am a wife, a mum to a toddler and currently 31 weeks pregnant with my next (and last) child. I blog about my life since having an ostomy and what it is like being a chronically ill parent/ employee/ friend. I am an admin over at Making Ostomies Cool and I am active on Facebook as Colitis To Ostomy, Twitter as colitistoostomy and Instagram as colitis_to_ostomy.
Please feel free to watch our old episodes on our YouTube channel and I would like to highlight that we are NOT medical professionals and we talk only from our own experiences and those that interact with the polls and questions. We welcome messages and interactions to the aforementioned polls and questions which you can do on the facebook page or on our Facebook blog pages.