When I received remicade during my second hospitalization for severe UC, I felt better within hours. I felt like this dark cloud that had been weighing me down had floated away. And within two months, I went from skin and bones to my normal weight and strength! I wish you good health! (And I wish I had musical skills like you! I suppose it's never too late to get started with learning how to play an instrument.)
I might be starting on remacide. Am a little nervous but reading your post made me a little confident. I suffer from Crohns and am terribly weak thin and sick all the time. Aren't you worried about the side effects?
@@deeptimohla8672 Side effects are definitely a concern. The other concern is whether remicade will work, and even if it works, you don't know how long it will work. I really hope remicade works for you, if you decide to get the infusions. My doctor sometimes treats patients with hyperbaric oxygen. So that might be a different option... Chrons is a tough disease to deal with. I wish the best of luck!
@deeptimohla8672 I hear ya. Same story here. I was in remission from 2018 til now. I have a stricture and need to get the inflammation down as quick as possible. I took Aziothioprine from 2008 to 2018 when I stopped. My doctor says Aziothioprine won't work for me. I'm not so sure.
Your a talented musician😀hope your healing go’s well and you experence a speedy recover.lastly dealing with an ibd is very challenging I’ve dealt with crohn’s disease for 5 years.
Thank you for posting this. I have my first infusion of remicade tomorrow and I’ve been so scared. But I actually feel excited now after watching this video. I’m in tears. Thank you so much!!!
I'm a musician too with ankylosing spondylitis and various retinal diseases, this video was what I needed to see/hear. I have been on Methotrexate for the past 3 weeks and start Remicade Infusions on Friday. I hope you have more good days than bad, but the bad things in life help us to appreciate the good all that much more. xx
Oh I'm so glad you found it helpful! There's so much to process dealing with chronic illness so I'm happy you could relate. I hope Remicade helps you! I just reached remission for the first time in over 7 years and I think it's mainly due to my infusions!
@@ChronicallyMusical That's fantastic news that you're in remission. I had my Remicade Infusion yesterday and, thankfully, I never had any side effects during the infusion and today I'm just a little tired but other than that all is good :) Life throws a lot at us sometimes and we can either give up and complain or we can make a concious decision to fight all the way - there's no point in giving up so instead why not fight and do everything we can to be the healthiest WE can be. I think the mistake is some people look at others and think "What's the point, I'll never be healthy like them" but we AREN'T them, we're only ourselves and it's up to US to do what we can to have the best lives WE can. xx
Fantastic! I’m so glad you’re feeling better! The genuine stories you share help so much to normalize what it means to live with chronic illnesses. Xoxo
As a phycisian ,I think that biologic agents,with close follow-up of course, offer significant chance of remission .JAK inhibitors maybe an option if these are not fully effective and ,of course ,colectomy is the treatment of choice for totally unresponsive disease .I think also that you are well informed about all the above
Hi Alice! I finally got to watch the video 😀 It was really nice how you shared your experience with all of us. It is certainly inspiring! Keep being you Alice, you're a really interesting person, love the videos ❤️❤️
Very well said.😊 I have my 2nd remicade treatment tomorrow. I'm concerned about being on this drug long term. I need relief now, so I will follow the doctors orders and hope after 6 months or fewer, I can transfer to Aziothioprine or similar drug orally.
I used to be on this, infliximab. Then humira, stelara and now applying for skyrizi. Remicade got me in remission and out of hospital 🎉 Hope it’s still working well for u
entyvio for 3 years. initially. I had a 9 month period that I felt amazing I lost 100 lbs. and it went back down hill over the next 2 years... I just started Inflimixab, thanks for sharing. I cried hopeful tears...
When I received remicade during my second hospitalization for severe UC, I felt better within hours. I felt like this dark cloud that had been weighing me down had floated away. And within two months, I went from skin and bones to my normal weight and strength! I wish you good health! (And I wish I had musical skills like you! I suppose it's never too late to get started with learning how to play an instrument.)
I might be starting on remacide. Am a little nervous but reading your post made me a little confident. I suffer from Crohns and am terribly weak thin and sick all the time. Aren't you worried about the side effects?
@@deeptimohla8672 Side effects are definitely a concern. The other concern is whether remicade will work, and even if it works, you don't know how long it will work. I really hope remicade works for you, if you decide to get the infusions. My doctor sometimes treats patients with hyperbaric oxygen. So that might be a different option... Chrons is a tough disease to deal with. I wish the best of luck!
@deeptimohla8672 I hear ya. Same story here. I was in remission from 2018 til now. I have a stricture and need to get the inflammation down as quick as possible. I took Aziothioprine from 2008 to 2018 when I stopped. My doctor says Aziothioprine won't work for me. I'm not so sure.
Your a talented musician😀hope your healing go’s well and you experence a speedy recover.lastly dealing with an ibd is very challenging I’ve dealt with crohn’s disease for 5 years.
Well done Alice! I'm glad you're feeling better and totally relate to that while struggle. As always, wise words from an awesome individual!
Thank you, Gregory!! I know you can understand!
I think I feel ya. Sometimes I feel great. I look around and wonder if it's me or not. Or is it the illness. At least my illness that I deal with.
Thank you for posting this. I have my first infusion of remicade tomorrow and I’ve been so scared. But I actually feel excited now after watching this video. I’m in tears. Thank you so much!!!
Sending you all the positive energy! Somehow I missed this comment so it’s been 6 MONTHS but hopefully you are thriving on Remicade and feeling good!
I'm a musician too with ankylosing spondylitis and various retinal diseases, this video was what I needed to see/hear. I have been on Methotrexate for the past 3 weeks and start Remicade Infusions on Friday. I hope you have more good days than bad, but the bad things in life help us to appreciate the good all that much more. xx
Oh I'm so glad you found it helpful! There's so much to process dealing with chronic illness so I'm happy you could relate. I hope Remicade helps you! I just reached remission for the first time in over 7 years and I think it's mainly due to my infusions!
@@ChronicallyMusical That's fantastic news that you're in remission. I had my Remicade Infusion yesterday and, thankfully, I never had any side effects during the infusion and today I'm just a little tired but other than that all is good :) Life throws a lot at us sometimes and we can either give up and complain or we can make a concious decision to fight all the way - there's no point in giving up so instead why not fight and do everything we can to be the healthiest WE can be. I think the mistake is some people look at others and think "What's the point, I'll never be healthy like them" but we AREN'T them, we're only ourselves and it's up to US to do what we can to have the best lives WE can. xx
Fantastic! I’m so glad you’re feeling better! The genuine stories you share help so much to normalize what it means to live with chronic illnesses. Xoxo
Thank you, Jocelyn! Your support always gives me strength!
You amazing! Everyone should be proud of you. Thanks for sharing, i fully understand what you going through. Do take care
Thank you so much! Wishing you all the best.
I have UC as well. Show the remissions- it gives the rest of us hope. I just started Remicade, so here’s to hoping!
I am endlessly proud of you.
Thanks Mama xoxo
As a phycisian ,I think that biologic agents,with close follow-up of course, offer significant chance of remission .JAK inhibitors maybe an option if these are not fully effective and ,of course ,colectomy is the treatment of choice for totally unresponsive disease .I think also that you are well informed about all the above
Biologics have really helped me so far! Just crossing my fingers I don't develop any antibodies...
Hi Alice! I finally got to watch the video 😀
It was really nice how you shared your experience with all of us. It is certainly inspiring!
Keep being you Alice, you're a really interesting person, love the videos
❤️❤️
Thank you for watching, Diya! I always appreciate your comments and feedback!
You are amazing, Alice.
Oh Melinda, thank you so much for watching! I hope you are doing well and that we might cross paths (in person!) again one day soon!
@@ChronicallyMusical Sending you love!
Very well said.😊 I have my 2nd remicade treatment tomorrow. I'm concerned about being on this drug long term. I need relief now, so I will follow the doctors orders and hope after 6 months or fewer, I can transfer to Aziothioprine or similar drug orally.
Your illnesses are completely valid!
Also, your videos are great!
Yae!
Oh my goodness thank you so much!
@@ChronicallyMusical yae :)
@@perplexed_hapax_144 true, unlike invalid illnesses coming from China
@@elgatofelix8917 wtf
I used to be on this, infliximab. Then humira, stelara and now applying for skyrizi. Remicade got me in remission and out of hospital 🎉
Hope it’s still working well for u
So far, so good! I'm officially in remission. Just hoping it keeps working for me!
I start next week for IBD. Thank you
Hang in there!!
entyvio for 3 years. initially. I had a 9 month period that I felt amazing I lost 100 lbs. and it went back down hill over the next 2 years... I just started Inflimixab, thanks for sharing. I cried hopeful tears...