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@@VoltageNostalgia Yes, it is important to know your food triggers with this disease. Thankfully my son is able to eat all of those but we understand others aren't quite as lucky as it can be so different for everyone. :( These recipes are straight from the Crohn's and Colitis Foundation page and there might be a better one on there that is safe for your food sensitivities. Lots of good stuff to choose from!

Good to know and thank you for sharing!! We will have to include the state parks in a separate episode when we cover more deals like this. We love state parks too!

Thank you! Glad you enjoyed it!

It must have been incredibly difficult for your grandfather as it was a different world back then. Most likely difficult to meet others like him and, because it still wasn't understood too well by doctors, hard to understand it himself. It would have been very tough. I am so thankful for the advancements today but they have so much further to go and they can't stop until they have found a cure. It is exactly as you said, people ask if you are better, like it will just disappear. Mason's favorite is when he is told "maybe you will grow out of it!". How we wish it were that simple!

Thank you for this!! It has been such a joy to know that Mason's story is helping others understand his journey and the disease itself. It has been healing for him and for myself. Thank you for the support and we can't wait to get to our next 50!

You don't know how much this means to us. Our hope was we could be there for you all in your lives providing comfort, friendship, and whatever help we can provide. Encouraging is key and the fact you said that meansso much. We are always thinking of you and cheering you on with our jazz hands!

Thank you for this! We try so hard to be fair and think everything through for each episode, especially this one. Please feel free to reach out or email me if you need any help or advice with the trip to Disney. I am happy to be of help if I can! I completely understand about wanting these kids to just enjoy the magic after all they go through (and you too!). I am keeping every finger crossed they switch to a system similar to Universal so Disney can remain a source of joy and escape for those facing serious health challenges!

That is my hope too, that change is already in progress behind the scenes. So many are speaking up and signing petitions, making their voices heard on this important subject. I can only hope change happens soon so you all will be able to go back to Disney. It is so sad that something that brings so much joy to so many with disabilities is a source of such pain right now. <3

It sure does seem like most people know someone with a light case. Makes it very frustrating to try to explain how this disease can vary so much! I can't imagine having to also fight cancer with the restrictions of Crohn's. We are proud to know you and are always keeping you close in our hearts!

Really really cool you came and gave him a message Jeff, thanks buddy!

Thank you so much for this! Mason was thrilled to read this and know his story is making a difference. We are both excited to follow your channel!

@@TheRealRCSparks Definitely thankful!

I myself have Ankylosing Spondylitis, Ulcerative Colitis, and Rheumatoid Arthritis issues. They weren't officially diagnosed until I was a young adult. I am thankful that the Humeria I am on helps me with the symptoms.

@@CustomCrawlerz I appreciate you sharing your story. I am so glad the Humira is helping. It can be tough to find what work so it is great when you find it. We will be thinking of you and your journey too!

I sure hope your upcoming trip goes well! We definitely understand each other since we know the urgency isn't something that can wait. We will not be heading back until August so I guess that is when we will see what happens for us. I agree, that documentation would be so helpful and would absolutely solve the problems with abuse. I wish you all the best and thank you for sharing your feelings on this too!

Thank you so, so much for this comment! We had tried our hardest to be balanced and fair so we really appreciated what you said. I think it is so sad that those like you who already face challenges that 'able' people will never understand have to continually explain themselves and feel that judgment and potential shame. There has to be a better way and I am glad you have gained confidence in this. We stand right by you in speaking out and I can only hope Disney reconsiders their current DAS stance. So many people will suffer because of this decision. :(

That is my fear like you mentioned. The difficulty getting out of line, especially depending which ride and how fare you are in line. It will be interesting to see if they do have an assistance button or something like that. Thank you for commenting and letting us know your perspective as well. It is all helpful and it helps us look at things differently or just validates feelings on this. Also, totally agree, Disney isn't just about watching ducks! ;) It is so much more!

We completely agree about the medical documentation and including all disabilities. We are truly hoping for definitive answers soon and possibly more tolerance and understanding of why standing in a line is difficult for multiple disabilities, not just a few handpicked ones. It sure sounds like the DAS pass has enabled you to experience the joy of Disneyland in the midst of many challenges. We will be waiting with you to hear more on how this will play out!

So, there’s no medical documentation necessary. My family and I are going next month and my youngest son is autistic. I literally just went through the process yesterday. The cast member specifically mention not to go into detail or provide medical documentation about his condition during the video interview. They will ask you one question which is “what is your main concern that requires the guest requesting the accommodation? and from your response, they will make a determination.

@@cejourne123 I hope you had success with the pass and I thank you for sharing. We have only done in person DAS pass so when we go back in August that will be the first time we use the new system. I sure wish they would change it to letting us provide documentation but at the same time I guess we just have to wait and see how this plays out. I hope you guys have a fun trip to Disney!!

Thank you for sharing the history of this since we are relatively new to the DAS pass world. I agree with so many points you made in here. It hit home about having to convince a stranger who knows nothing of your disabilities that they exist and having to go through the humiliation of that discussion. I also definitely think you are correct, there should have been a way to notify those booking and planning vacations or at least find a way not to penalize them with non refundable tickets. I am really holding out hope things will change but not sure if I am just being unrealistic at this point. Hoping more will share their stories to keep this topic relevant and in the public eye. It is so important to come together to support each other as you said. <3

Hi!! This is Mason and I wanted to say thank you! I was excited to see your comment and it means a lot to me to have your support. Thank you for all you said. You have been there for me since my diagnosis and I appreciate it so much.This made my whole day!

@@ibdetermined Maaaaaaaaan, Im so proud of you for the insane progress you have made as a human being! You clearly have a family that supports you and loves you, ANNNND you are a CHAMPION! What an awesome combo you have going on. How could I NOT follow along with a young warrior that is trying to help others with his experience? Hey.. lets not kid ourselves.. life can really suck. I dont want to take that away, there are moments that truly are difficult and painful - but warriors always have the gumption to stand back up, and keep up the fight. Its just in our blood. Im proud of you brother, Ill be rolling with you as long as I am able :) You inspire me! Rock and Roll buddy

So much confusion on what remission meant initially! I am glad you found value in this episode, we were very excited to clarify and really go into detail on it!

Thank you for this!! We appreciate you listening and commenting. Knowing we have been of some help to you makes this podcasts so worth it. Thank you for that! Also, we sure hope the Skyrizi is working well!

Thank you for sharing too. Grief is a rough road and I am glad we can be there to support each other.💜

Thank you for this! We are happy to support our IBD family and educate others. I am so glad you got a quick diagnosis and I sure hope your son is currently doing well. I know things can change so quickly, but I definitely am hopeful that as he comes upon his 4 year diagnosis anniversary, he is having good days.

@@ibdetermined thank you. Rinvoq has been working well. We have a follow up next month. He is definitely a stronger person and has decided to stay home for college rather than go away due to his illness for now. He is graduating hs in June. I hope Mason continues to advocate. I think your podcast is wonderful.

One alone is isolating so having both must be incredibly challenging. <3 You are one of the bravest people we know! The podcast has been wonderful for us too because we also know we aren't alone. The support and understanding is so important. <3

Hi to Micheal!! We are so sorry to hear about this struggle. <3 It is so frustrating and difficult. We ended up doing a slow wean over three months since Mason also couldn't come off of the steroids. Thankfully it worked for him and I sure hope the doctor figures out a solution for Micheal. <3 I think people forget that with kids there is so many concerns for us parents as far as growth goes too. Stelara is a slow burn and took us about 11 months to finally see much bigger results. When the doctor added in Entyvio it just clicked and he was doing so well. He has been on that combo for 2 years now. But I know that what is the answer for one child might be a failure in another. I hope treatments get more precise in the future. Keep us posted on how Micheal is doing!

Thank you for this. We are going to look up the poem! You said it so well too about mourning the life you thought you would have to enjoy the life you have. I think it is a necessary step in acceptance and fully embracing and loving that new life!

We see the same at Rady's! We were there Tuesday and there was only one other family besides us wearing a mask. That is exactly why we wanted to bring it up because so many people don't wear them, it is important to remember there are still people who have to wear them. To be understanding. Just like you with all you are going through!

We love you guys too!! We are immensely thankful for each of you and all you do. I am glad you got to watch and hear about how much of an impact blood donations have made and will make in Mason's life. <3

I am so glad you replied because we didn't mention JAK inhibitors and I have heard such good things about Rinvoq. We will mention Rinvoq on a future episode with other oral drugs and go more into DMARD's. I am excited to hear your son is finally seeing success and really, really hope Rinvoq is your key to remission. It is said over and over but this disease is such a roller coaster and I am sure you are so relieved to see him doing better!

@@ibdetermined I think you guys are doing amazing job with these podcasts.

Oh, this is a great idea! I like the idea of starting in the waiting room. Gets their minds off of worrying about what is coming up and gets them to focus on the prize. So smart!

I am so happy you are listening along with us! And I also thank you for sharing your insight and son's experience. I too am also fascinated by those same patterns and truly think Crohn's could branch off into different subcategories. I know they are studying this in Pharma where they are documenting hundreds of thousands of IBD patients who did and didn't respond to certain treatments to hopefully create treatments in the future that will be more specific. Like you said about Vance, worked great for your son while others flared. There just seems to be so many levels to this disease that haven't even been discovered yet. And I think even beyond figuring out what treatments will work and for who is figuring out the why. I think that is where the real breakthroughs will come through!

Hi! I think these are all over. Some child life specialists didn't mention it but others did. Definitely worth asking because if they don't have them I am sure they could get it at their hospital. You can also get your own mailed I believe by signing up online at beadsofcourage.org. It is such a cool program!

I want to thank you for sharing because it is so important for your experience to be heard. It is a full time job fighting for something that shouldn't be that difficult to get for our kids and teens. I admire you for keeping up the fight and I know how difficult that it is but it sounds like you would do anything to help your son. Never give up and thank you again.

Thank you for this comment. I love that you know this! We have been to the Ahwahnee and it makes complete sense. :D It definitely feels like you are in a National Park. Good insight on the dress code too. We are going back for lunch soon so it will be interesting to see the difference in dress code.

Thank you for this! That is really good to know about the pill method because I am sure there will be different options given to Mason as he gets older and has new doctors. That does not sound fun! I like the idea of the prep method you talked about as anytime there is less material to drink, the better! I am so glad you shared this!

I am so happy you found us! It really is nice to just have those feelings of validation and understanding. Just the other day, we planned to do nothing on a day we had open and it was the best day. SO relaxing and we didn't have to watch the time for anything. ;)

We will be thinking of you on those days! Doesn't it make sense to set it up like that? I am sure you have so many appointments it can be hard to remember but having specific days helps you never forget one!

That is so good to hear! I am so thankful for the option to homeschool for Mason and I am also thankful he loves it. I know it isn't for every child but in our situation with his diagnosis and treatment situation, it has allowed Mason to flourish!

Thank you. This was incredibly special and I am so thankful we were able to do it! <3

We are so glad you enjoyed it! We did our best to keep it short because I kept feeling like we could take hours talking about it. ;)

Haha! We agree!!

Can you imagine the graphics for a Crohn’s game.

I have one pill that won’t fit in the pill cutter. 😱🤦🏻‍♀️

@@lindabmusiclessons1 Ha! Mason and I were talking about that exact thing!

@@lindabmusiclessons1 That is crazy! We have had them close to not fitting but not one that wouldn't fit. I can't even imagine trying to take that!

Hi! Your comment is your entry! :) We don't sell them but I have just sent them to those who could really use them and just ask that they cover shipping. We do our best to just help other families out since I know how difficult it is on so many levels.

@@ibdetermined I would love to to do that, my son who is 10 was diagnosed at four who also has autism I need to better organize the symptoms I can track as we’re having trouble finding a medication that works

@@wheretonext2897 If you want to email me karmatudecandles@hotmail.com with your address I can figure out shipping and we can send you one of the food logs and restroom journals. I think they would definitely be helpful for your son.

Stress is definitely something we are going to discuss in a future podcast because that is an important one! So difficult to manage when this disease is stress inducing which in turn causes flares. A vicious cycle!

I am so glad you have been able to watch! That is our hope, that it creates more understanding and continues to give Mason a voice. :) We too hope for a long remission and many good days ahead for Mason. Hugs to you and we are so excited you like the podcast so far!

Thank you so much for watching and leaving such a kind comment! <3 It helps keep us motivated to continue to speak up and raise awareness for so many who are deserving. We appreciate it!

Thank you for this! Our hope is to educate and create a bridge so people can better understand this disease and all it takes to live with it daily. Future episodes will get more detailed to so that we can further explain the ways it manifests and can also affect mental health. We agree, the patient and caregiver is so important! Thank you for taking the time to comment. :)

We are so happy your watching and following along with us!

Thank you so much!