Crohn’s & Colitis Australia (CCA) has been working with people living with Crohn’s disease and ulcerative colitis, healthcare professionals, governments and the public to minimise the impact that these conditions have on the community since 1985. For more than 36 years, CCA has been the only Australian organisation working with and for patients and their families, the doctors that treat them, and the policymakers who can bring about change. CCA provides high quality information, supports life-changing research and campaigns vigorously - for more knowledge, better services and more support for people affected by inflammatory bowel disease.
Visit our website to learn more, read personal stories from our community and keep up to date with the latest research news into Crohn's and colitis. Our community guidelines can also be found here - crohnsandcolitis.org.au/about-cca/social-media-community-guidelines/
She's so right about mindsey My crohns was out of control and my doctors were no help. I changed my mindset and no longer looked at myself as a victim and I've never felt better. Got off all my pain meds and everything.
Thank you for bringing attention to this. I’m a ~ 23 year (since 2001’) sufferer of Crohn’s disease. Currently I’m dealing with the damage caused by inflammation / multiple surgeries. I have no less that (15) strictures of which all of them located in the jejunum - yes life is something like a living hell. Nothing works as there in nothing to my knowledge that can do much of anything to “fibrotic” or scare tissue and this is what is causing my strictures. I’ve already lost ~ 1/3 of my small bowel via surgical removal so trying hard to not lose anymore.. If I were just dealing with “inflammation” I’m confident I could deal with this (wish I understood how terrible sugar is in particular and of course processed food in general) but built up fibrotic / scare tissue is something else entirely unfortunately. GI doctors have been zero help for me in this regard, these “biologics” do nothing for strictures caused by scare / fibrotic tissue. These drugs do however make big Pharma happy. Not gonna have my immune system suppressed for no good reason anymore.
Thank you Dr Hendy, when you originally replaced Dr Florin, I was sceptical. I asked Heidi, your clinical nurse, for her opinion of you. The opinion was that you were an exceptional doctor. My opinion of you has increased over recent years, I am very glad I am under your care! Rohan Wiblen.
We have a Facebook group for people who are having or are concidering having faecal microbiota transplants. This group's primary aim is support and information sharing. Please only join if you or someone you are caring for has chronic gastrointestinal issues. There are lots of us in this group who have suffered or are still suffering as Gregg acknowledged in this video. m.facebook.com/groups/2140010336227321
Most of these things I do and adapt them to suit myself. It’s been 18 years and I have finally managed to live my life as normally as I can whilst in the midst of a Crohn’s storm. It was easy to ride the wave instead of give into negative feelings. I have accepted my disease emotionally and intellectually and this made a huge difference. Loving my Crohn’s and the healthy lessons it teaches me also helps as I realise the importance of listening to my body and feeding it what it needs to minimise pain. And why wouldn’t I? That’s what self love would do after all. I definitely find continued working and helping others very beneficial also. My aim is to live as normal of a life as I can even whilst having a flare and going through changes because I can do it and am. Suppose it helps I have degrees in psych so makes it easier. I am the master of my own mind. Plug in and plug out when needed. My values, morals and beliefs do not change even when having a flare. The soul also helps me immensely to keep me whole and grounded aswell as safe. Plus I am very greatful to my Crohn’s (teaching me ) as this gives me a wonderful opportunity to learn more about myself on all levels of body, mind and soul. What more could I ask for! Crohns has taught me to love myself and the disease even more because their is nothing I would not do for myself that’s in alignment with my high levels of self integrity.
Some of these thoughts are very similar to Buddhism. I personally find observing my thoughts and emotions very beneficia aswell as acknowledging them and letting them go with loving kindness (meta). However nothing is better than being proactive in my own treatment and management plan. Being actively involved as a participant and choosing wellness over disease. I am not my disease no matter how ill I may feel at times. I am still a person who likes to ........ and that will never change. Disease is temporary as comes and goes. I am more permanent here as a healthy individual. I’ve got this and can handle it no matter what. I refuse to identify with the illness and base my life on that. I am more than that. My self belief and faith in myself help me get through everything and anything. Self support I personally find is the best in my situation. I research, research and research and play around with variables both physically and psychologically in order to better suit my personality structure, situation and what’s going on. Where their is a will their is always a way. My job has been to find it. Awareness does not scare me as much as ignorance does. Best of luck to everyone. You deserve peace and to be happy.
Just had first IV infusion of stelara (wonder drug, liquid gold) with no side effects. First for me. Am so wrapped and can only hope and pray it works and gets me into remission with the self injections. If not, at least it was worth it to know that I experienced no side effects and that it’s possible for researchers to minimise nasty side effects. This gives me enormous hope for the present and future regarding better treatment outcomes . Thank you to all who do the research, clinical trials and the hard work to help people like me and to also excel yourselves in your chosen specialty field. 🙏. Well done 👏👏👏👏🎊. I have also found no greater hope and joy to be found in self management of active disease process where the dietary restrictions and modifications are soooo worth it because I have a sense of perceived control over my pain levels, diarrhoea and tiredness by doing the right thing and loving my body and disease process as I understand it to be . It allows me to have my quality of life back where I continue as normal with restrictions. What more could I ask for other than to live life itself and enjoy it no matter how active my disease is. It does not stop me because I always find a way through it all. I’m a person first and foremost and I refuse to let the disease control me. I gain whatever control I can out of self love for myself and my body. Wishing everyone all the best on their own unique IBD journey 🤩 because I’m great full for my Crohn’s as it taught me how to live and enjoy life at my worst. Now imagine what I could do at my best when in remission! Watch out world. 😃😃😃
Great video! Me and my wife are thinking of moving to australia from the uk, we have the nhs here. Is there something similar in Australia? Or an insurance you pay monthlt?
It's great that you have gone out and put this together with a qualified speaker so thank you. He is obviously nervous and I'm pleased I don't need to feel the need to absolutely slam him because he started out saying "Um" every second word. Thank the powers that bee 🐝 have helped him reduce his infatuation with Um as much as he likes "Um" bananas 🍌 "um". I can't actually consent on what he is saying because I'm dyslexic and brain damaged from injections I was given. I'm completely distracted by the um ing. Any chance there is a transcript of this please?
How do you know if i have IBS i have had half by bowel out when 20 years old one year later 3 foot of gang green intesting taken out and that left my with cronic Diarrhoea and a Malabsorbsion Syndrome i need B12 Inj once a month i take Questran lite to stop the Diarrhoea and had many opps for bowel obstructions and complete blockage i nearly had a Bag im now 64 and have cronic pain 24/7 is there a name for my Bowel trouble ??
Had surgery for my Crohn's 3 weeks ago (I had no other option in the end - and this was pre-Crohn's diagnosis), except you can't cure Crohn's. So the surgery was like a temporarily relief I needed, otherwise death was around the corner for me with an ever occurring intestinal block. The steroids weren't fully working in turning down the inflammation of my small and large intestines, and steroids aren't a long-term solution either due to their side-effects. I almost had to have stoma, the stoma talk they gave before the surgery was horrifying, and my parents and Brother were there too.
Had surgery for my Crohn's 3 weeks ago (I had no other option in the end - and this was pre-Crohn's diagnosis), except you can't cure Crohn's. So the surgery was like a temporarily relief I needed, otherwise death was around the corner for me with an ever occurring intestinal block. The steroids weren't fully working in turning down the inflammation of my small and large intestines, and steroids aren't a long-term solution either due to their side-effects. I almost had to have stoma, the stoma talk they gave before the surgery was horrifying :( And my parents and Brother were there too.
I am dissapointed with this commercial. When I saw a new commerical was coming out I was excited. What is the objective of this commercial? It does nothing to inform people about how deliberating the disease can be nor does it provide any emmotive message as to why people should donate. The whole ad boils down to the message "crohs suffers can't wait to use the toilet" This trivialse the other more severe affects of the disease and focus on the one side effect people are most ashamed of.
