Thank you Charlie for the work you do and information you provide. The fatigue, brain fog, and mood issues from Crohn's has ruined almost every aspect of my life. The only thing that has worked for me is prednisone but it obviously can't be taken long term. Withdrawing was hell. Azarathioprine didn't work for me and Infliximab has just failed for me and I'm starting to lose hope. I've heard that people who fail ant-tnf often respond to JAK inhibitors. Is this true? Maybe a vid on the subject of failed treatments / treatment journeys. Or maybe a vid on people who have worse brain related issues than gastro symptoms. I say this because, when people talk about IBD, the focus is primarily on the gastro symptoms but I'd do anything to have more gastro symptoms and less brain related symptoms.
Thank you. So much. Your work and commitment is so valued. I have shared this on my f.book, 19 years into my diagnosis, and only just feeling brave enough to declare and discuss openly x
Hello Doctor Lees, My son who is 23 has had Crohn's disease for 4 years and was recently in hospital for 10 days after a really bad flare up and pretty extreme flare. He is now on a drug programme of going to hospital for an infusion every two weeks and then requiring self injection at home. At the moment he is responding well to the treatment. Since this event of being hospitalised I have tried to immerse myself in everything I can regarding Crohn's. Not everything on CZcams is helpful but luckily I came across you and I want to thank you for the informative and precise way you speak about the disease. It has helped me enormously in trying to understand what my son is going through and the problems that may lie ahead. It is also encouraging listening to you speak of the data and research regarding treatment that is going on to try and make people with IBD have a better outcome. I will continue to follow religiously now and just want to thank you again for taking time out of your busy to help people like my son and also family members who sometimes feel helpless watching their loved ones struggle with their disease.
I've learned a lot from your channel over the year (since I've been diagnosed). It's been a lot of downs but also ups and frankly, I'm just so grateful that we have access to medicine which can aleviate symptoms and to medical staff who can help us through this. A year in and I feel like I got my life back, only now I'm way tougher
Thanks for these updates Charlie, very helpful. Was diagnosed with UC in January this year, most of my symptoms now under control with meds except the debilitating fatigue. Would be keen to hear more suggestions on how to manage this as really struggling to balance this and full time work.
Thank you for taking the time to make these videos. I have had mild/moderate UC for nearly 3 years. I go on Prednisolone 5mg sups and these helpish.. but within a week of coming off a 28 day course it is almost like I never took them at all. I also have oral pentasa granules Not sure how much these help. I would be interested to understand how my self medicated ibuprofen use impacts me as i know this is bad for my fut microbiome. I have been a migraine sufferer since my childhood. Now as a woman in my 40s I can link my migraines to ovulation and menstruation. I tend to bleed after Ibuprofen, but I struggle to function with out it. 🙏 So much for making these videos. It is a shame I am based in Cornwall and your practice is in Edinburgh
Have you discussed biologics with your physician. My daughter has Crohns and infliximab has brought it under control. Prolonged use of steroids can be damaging.
Why do a lot of people think of elderly people when they hear "bowel disease"? Also, they tend to equate with with a colostomy bag (sometimes meaning ileostomy). Was it believed to have been an old person's disease? Or was it given another bame for younger patients that didn't stick? Thanks for the videos, very informative, yet easy to digest (haha!). I'd quite like to know about what's new treatment wise, if there's anything in the pipeline that might come later on. Those sorts of things. Thanks 😊
Thank you Charlie for the work you do and information you provide. The fatigue, brain fog, and mood issues from Crohn's has ruined almost every aspect of my life. The only thing that has worked for me is prednisone but it obviously can't be taken long term. Withdrawing was hell. Azarathioprine didn't work for me and Infliximab has just failed for me and I'm starting to lose hope. I've heard that people who fail ant-tnf often respond to JAK inhibitors. Is this true?
Maybe a vid on the subject of failed treatments / treatment journeys.
Or maybe a vid on people who have worse brain related issues than gastro symptoms. I say this because, when people talk about IBD, the focus is primarily on the gastro symptoms but I'd do anything to have more gastro symptoms and less brain related symptoms.
Thank you. So much. Your work and commitment is so valued. I have shared this on my f.book, 19 years into my diagnosis, and only just feeling brave enough to declare and discuss openly x
Hello Doctor Lees, My son who is 23 has had Crohn's disease for 4 years and was recently in hospital for 10 days after a really bad flare up and pretty extreme flare. He is now on a drug programme of going to hospital for an infusion every two weeks and then requiring self injection at home. At the moment he is responding well to the treatment. Since this event of being hospitalised I have tried to immerse myself in everything I can regarding Crohn's. Not everything on CZcams is helpful but luckily I came across you and I want to thank you for the informative and precise way you speak about the disease. It has helped me enormously in trying to understand what my son is going through and the problems that may lie ahead. It is also encouraging listening to you speak of the data and research regarding treatment that is going on to try and make people with IBD have a better outcome. I will continue to follow religiously now and just want to thank you again for taking time out of your busy to help people like my son and also family members who sometimes feel helpless watching their loved ones struggle with their disease.
I've learned a lot from your channel over the year (since I've been diagnosed). It's been a lot of downs but also ups and frankly, I'm just so grateful that we have access to medicine which can aleviate symptoms and to medical staff who can help us through this. A year in and I feel like I got my life back, only now I'm way tougher
Thanks for these updates Charlie, very helpful. Was diagnosed with UC in January this year, most of my symptoms now under control with meds except the debilitating fatigue. Would be keen to hear more suggestions on how to manage this as really struggling to balance this and full time work.
2nd this.
Thank you for taking the time to make these videos. I have had mild/moderate UC for nearly 3 years. I go on Prednisolone 5mg sups and these helpish.. but within a week of coming off a 28 day course it is almost like I never took them at all. I also have oral pentasa granules
Not sure how much these help.
I would be interested to understand how my self medicated ibuprofen use impacts me as i know this is bad for my fut microbiome. I have been a migraine sufferer since my childhood. Now as a woman in my 40s I can link my migraines to ovulation and menstruation. I tend to bleed after Ibuprofen, but I struggle to function with out it. 🙏 So much for making these videos. It is a shame I am based in Cornwall and your practice is in Edinburgh
Have you discussed biologics with your physician. My daughter has Crohns and infliximab has brought it under control. Prolonged use of steroids can be damaging.
I discuss it extensively. I have my next apt May 1. Thank you for the reply
Why do a lot of people think of elderly people when they hear "bowel disease"? Also, they tend to equate with with a colostomy bag (sometimes meaning ileostomy). Was it believed to have been an old person's disease? Or was it given another bame for younger patients that didn't stick? Thanks for the videos, very informative, yet easy to digest (haha!). I'd quite like to know about what's new treatment wise, if there's anything in the pipeline that might come later on. Those sorts of things. Thanks 😊