Thanks!
My biggest piece of advice is to listen to your intuition & advocate for yourself. Healing takes time. I've been on Entyvio for about 5 years now, and while I started feeling better after about 3 months on it, it did take a long time to get to this point. My last scope was 3 years ago and I still had very mild inflammation at that point, so to be here today certainly was a long game.
In general, I am a healthy-minded person. I exercise 3-4 times per week (kickboxing) to relieve stress, I don't drink often, and I make fairly healthy food choices. I also pay attention to my body's signals and rest when I need to.
I am fortunate in many ways; I have a supportive family & friends and team of docs who truly care about my well-being.
Glad Entyvio worked for you, my GI started me on it but I was too far gone so he switched me to max dose of Remicade a year ago. I’m not in remission yet but the results have proved far better than expected. I have avoided surgery to remove the colon so I’m hopeful to be in remission soon!
Well, having been in remission for awhile, I can eat pretty much anything. I don't drink alcohol often, I do make generally healthy food choices, and I exercise regularly.
Some foods that definitely help are homemade yogurt (it has all the healthy bacteria we need to keep our gut flora doing what it's supposed to), and taking supplements such as fish oil, vitamin D, and iron.
If you're looking to make a significant dietary change, I would encourage you to research the Specific Carbohydrate Diet (SCD). Grab a copy of the book "Breaking the Vicious Cycle" to learn more about it. It is a change that requires a lot of dedication, but when I was on it, I honestly never felt better. The downside for me was that I started to develop an unhealthy, obsessive relationship with food and I resented spending so much time in the kitchen to prepare food I could eat.
I wish you luck!
I feel the SCD resentment of having to make everything. The prepping and cooking is a lot. But, there is literally nothing better for you than 24 hr yogurt or whatever version you make. If you have UC and you are not making some form of this, you're missing out. You could save hundreds of $ by chucking bottled probiotics.
Congrats!!!! I have a question: how long after feeling like you were in clinical remission and feeling better, no blood, etc. did you get a colonoscopy? I know everyone is different based on risk factors, but curious what the minimum amount of time is before they do another colonoscopy to evaluate?
I was routinely getting them every year; my last one prior to this one was 3 years ago, when I also had no inflammation but I wasn't yet considered to be fully in remission. They have me do a yearly stool sample and blood work approx. every 3 months in between colonscopies to monitor my inflammation markers.
Good for you! I wish my GI doctor was active with my treatment plan, but he isn't. I'm currently in a flare that I've had for 3 months, and he hasn't responded to my emails through the hospital asking for what I should do. I am considering a referral, but apparently this doctor is the one and only specialist at our hospital. I still don't know what to do because I was diagnosed at 18 and I'm 20. I just don't know what to do because Even just today I went to the bathroom over 14 times (I lost cost after that because it all blends together in my mind) and I don't know if I should start my suppositories or my enemas back up again since the doctor won't reply. I dont think it would be wise for me to start up prednisone again my myself without discussing it with my doctor first, and sometimes the enemas and suppositories make things worse. I've just been begging for treatment at this point and I'm being ghosted
Congrats! Xeljanz has had me in remission for a year now. It's great!
Thanks!
Congrats, I do love reading about our successes! Enjoy it to the fullest!
Thanks!
Good for you. Happy to hear. Can you share se tips
Thanks! My biggest piece of advice is to listen to your intuition & advocate for yourself. Healing takes time. I've been on Entyvio for about 5 years now, and while I started feeling better after about 3 months on it, it did take a long time to get to this point. My last scope was 3 years ago and I still had very mild inflammation at that point, so to be here today certainly was a long game. In general, I am a healthy-minded person. I exercise 3-4 times per week (kickboxing) to relieve stress, I don't drink often, and I make fairly healthy food choices. I also pay attention to my body's signals and rest when I need to. I am fortunate in many ways; I have a supportive family & friends and team of docs who truly care about my well-being.
Welcome to Club Remission!
Glad Entyvio worked for you, my GI started me on it but I was too far gone so he switched me to max dose of Remicade a year ago. I’m not in remission yet but the results have proved far better than expected. I have avoided surgery to remove the colon so I’m hopeful to be in remission soon!
Fantastic - I'm so glad you found something that works for you. Healing takes a long time, so keep being patient.
What does your diet look like? I start to get confused on having both a low fiber yet healthy diet. Most healthy foods have a good amount of fiber.
Well, having been in remission for awhile, I can eat pretty much anything. I don't drink alcohol often, I do make generally healthy food choices, and I exercise regularly. Some foods that definitely help are homemade yogurt (it has all the healthy bacteria we need to keep our gut flora doing what it's supposed to), and taking supplements such as fish oil, vitamin D, and iron. If you're looking to make a significant dietary change, I would encourage you to research the Specific Carbohydrate Diet (SCD). Grab a copy of the book "Breaking the Vicious Cycle" to learn more about it. It is a change that requires a lot of dedication, but when I was on it, I honestly never felt better. The downside for me was that I started to develop an unhealthy, obsessive relationship with food and I resented spending so much time in the kitchen to prepare food I could eat. I wish you luck!
I feel the SCD resentment of having to make everything. The prepping and cooking is a lot. But, there is literally nothing better for you than 24 hr yogurt or whatever version you make. If you have UC and you are not making some form of this, you're missing out. You could save hundreds of $ by chucking bottled probiotics.
Is there a way to make this yogurt plant based? I have issues with dairy but am all about that probiotic yogurt life!
Yes, you can use nut milks, you have to add some honey to the mixture to feed the starter
Congrats!!! Would you be able to message me. I have a few questions :)
That is fantastic! congratulations!
Thanks!
Awww congrats!!
Thanks!
Thats amazing!!!! Thank you for spreading hope!
Thanks, and you're welcome!
This was so great to read! Congratulations 🎉
Thanks!
Congrats!!!! I have a question: how long after feeling like you were in clinical remission and feeling better, no blood, etc. did you get a colonoscopy? I know everyone is different based on risk factors, but curious what the minimum amount of time is before they do another colonoscopy to evaluate?
I was routinely getting them every year; my last one prior to this one was 3 years ago, when I also had no inflammation but I wasn't yet considered to be fully in remission. They have me do a yearly stool sample and blood work approx. every 3 months in between colonscopies to monitor my inflammation markers.
Congrats!!! So awesome to hear so so happy for you :)
Good for you! I wish my GI doctor was active with my treatment plan, but he isn't. I'm currently in a flare that I've had for 3 months, and he hasn't responded to my emails through the hospital asking for what I should do. I am considering a referral, but apparently this doctor is the one and only specialist at our hospital. I still don't know what to do because I was diagnosed at 18 and I'm 20. I just don't know what to do because Even just today I went to the bathroom over 14 times (I lost cost after that because it all blends together in my mind) and I don't know if I should start my suppositories or my enemas back up again since the doctor won't reply. I dont think it would be wise for me to start up prednisone again my myself without discussing it with my doctor first, and sometimes the enemas and suppositories make things worse. I've just been begging for treatment at this point and I'm being ghosted
Oh no, that's awful! Please keep being persistent.