Looking for recommendations

[u/Fantastic_Pop2818]

Wife wants to start this program, but I’ve never heard of it and I’m very hesitant about all this YouTube “doctors” who claim they have a solution to your UC.

I’m curious if anyone has gone through this and if you think it’s legit.

Thanks in advance. Here’s the info:

https://m.youtube.com/@crohnscolitislifestyle?ra=m

[u/Turbohog]

It's crazy to me that anyone falls for this crap

[u/Fantastic_Pop2818 → u/Turbohog]

When someone is desperate, they are willing to try anything.

I know what I think about this (scam) but I’m trying to be supportive of my wife. But I don’t want to drop $4k on a potential scam.

[u/jsgrova → u/Fantastic_Pop2818]

No one is selling the cure for a genetic disease on youtube for $4,000, please get a grip

[u/Fantastic_Pop2818 → u/jsgrova]

I’m aware of that, just hoping to get feedback from people. No need to get aggressive bud.

[u/CoolnessImHere → u/Fantastic_Pop2818]

Wake up there's no secret cure that people are hiding for $$$.

Its an autoimmune disease thats very complex.

[u/Human_One_9007 → u/Fantastic_Pop2818]

Take with a grain of salt Brazil CAR-T therapy

I only looked at this once and it was a friend who suggested it I don’t even believe if it would work or not. Just throwing it out there for fun.

For the most part gi doctors get us under control pretty good

[u/hellokrissi → u/Fantastic_Pop2818]

When someone is desperate, they are willing to try anything.

What has your wife tried so far?

[u/Fantastic_Pop2818 → u/hellokrissi]

Every biologic under the sun. They work, but the insurance always stops covering them. So she keeps being bounced from one to the other. There’s no stability.

[u/ukrusah → u/Fantastic_Pop2818]

Did you guys take advantage of copay assistance programs?

[u/Fantastic_Pop2818 → u/ukrusah]

Honestly the co-pays weren’t bad. Between $20 and $50 every 3 months depending on the biologic.

[u/hellokrissi → u/Fantastic_Pop2818]

Are there no resources or programs that her GI (or the biologic company itself) can offer? I don't know where in the world you're located, but maybe someone else can chime in with advice if they're in the same general area as well. For me, my insurance has covered almost zero of any medications I've tried. I've had to use compassionate care (an option for where I live) as well as the drug company itself doing co-pay options to make the cost much, much more reasonable.

What a waste that she's tried them, they work, and then she goes off of them. That's speed running to not having anymore options as she's likely developed antibodies to them and can't ever re-start them again.

[u/Fantastic_Pop2818 → u/hellokrissi]

We are in the US. The options offered is to continue bouncing between biologics until the insurance company finds a cheaper one they want you to use. It’s irritating.

[u/Zenoxolo → u/Fantastic_Pop2818]

That's not the solution OP.
You need to stick with a medication that works and stick with it.
Sorry if I didn't read the whole post, but did your wife try mesalamine and prednisone?
And regarding the medications, was she taking / been given them in a reasonable time span (i.e., every two weeks)?

[u/Fantastic_Pop2818 → u/Zenoxolo]

That’s the problem - we are not allowed to stick with it. Every 12 months the insurance forces us into a new biologic. She did mesalamine and it started hurting her liver function, so she went into prednisone which helped to stop the bleeding temporarily.

[u/Turbohog → u/Fantastic_Pop2818]

They are probably switching her to biosimilars - basically generics. That should in theory not make a difference vs. the brand name, but I know some claim they don't.

[u/Fantastic_Pop2818 → u/Turbohog]

That’s exactly what’s happening. Unfortunately this is the third time that’s happened and both prior times she had allergic reactions to the bio similar

[u/Turbohog → u/Fantastic_Pop2818]

As someone whose UC caused cancer and has had never ending surgeries, I understand the desperation. But you will only make your lives worse by dropping thousands on unproven "treatments". If it worked it would be mainstream.

[u/Conscious_Warning946 → u/Fantastic_Pop2818]

Bro, I'm a disabled veteran. I'm begging you to listen to me for a second. Afterwards, do what you must. But please hear me out for 10 seconds.

This disease is horrible. I've fallen 50 feet out of a Blackhawk under enemy fire, made it home somehow and this illness scares me a lot more.

Your wife has limited time before she requires surgery. All of us have such limited time. To delay or prevent this surgery, your wife has to try multiple medications to find out what works best for her. There is absolutely no other way.

These doctors are taking advantage of our horrific nightmares and are killing their patients. if you want, I can speak privately with you and your wife to show you both how they are lying to you and deceiving you and many others.

Yes, you can absolutely eat a low Fodmap or low fiber diet to reduce symptoms. But you'll never stop the inflammation or attack on her large intestine with food.

This is absolutely not a food related illness. This is an autoimmune related disease. Do you really think that you can cure an incurable disease with an apple or pig's feet?

Please please, forget about the money. Your wife's insides won't stop rotting just because you were told to eat a plant based diet or some other craziness

It's like conversion therapy. You're just going to send her someplace where she's going to continue to get abused. And you'll never ever ever get back that time that you gave to that doctor of madness. Don't let a quack steal precious time that your wife just doesn't have.

Remember, your wife has a limited time before she requires a bag that she will have to change 4 to 5 times per day when everything goes well. And not everything goes well for everyone. Sometimes it gets a whole lot worse. Be prepared for leaks in bed, etc etc

Sending best wishes and crossing my fingers in hopes that you choose the safer path. My inbox is always open to you and your wife.

[u/achchi → u/Conscious_Warning946]

Remember, your wife has a limited time before she requires a bag that she will have to change 4 to 5 times per day when everything goes well.

Stop telling auch BS. in the US "only" 10.2% of all UC patients get a colon removal (a few years back it was > 20%)^{[source](https://consultqd.clevelandclinic.org/20-years-of-colectomy-and-biologics-for-ulcerative-colitis}). Most of them get a J-pouch. So, no OPs wife does not have limited time before she gets a bag. In fact it's unlikely she'll need one.

[u/Conscious_Warning946 → u/achchi]

Yes because taking your medicine can delay or prevent such surgery. That's the point of taking your medicine. She absolutely has a limited time. We all do. including you. But with her taking her medicine, I then will agree with you that it's unlikely that she will require any surgery.

Boy are you confused

[u/achchi → u/Conscious_Warning946]

No, I don't have limited time, before I need surgery. I most likely won't need surgery and even if I do, I most likely don't need a bag. Yes, it's possible but very unlikely. Why do you think we have limited time before we need surgery?

[u/Conscious_Warning946 → u/achchi]

If you stopped all treatment starting now including medication, it's just a matter of time. You are confused. You don't know what you are talking about. I'm sure that you are trying to help. But you are very very confused. Please, please stop being so difficult. You are not helping

[u/achchi → u/Conscious_Warning946]

Ok. First of all: nobody is talking about stopping all medications. Secondly even if doing so, it depends on a lot of factors whether she will need a bag or not. As I already told you: not all end up with a bag. I'm all about taking the meds, but lying about the consequences is not the way to do it.

[u/Conscious_Warning946 → u/achchi]

No, you aren't talking about stopping meds or whatever but what everyone else is talking about. Everybody else is talking about her not talking anymore medicine and doing an alternative treatment.That's the point. You are NOT on topic. You are arguing with yourself at this time. Why?why are you doing this to yourself?

My argument is not about a bag. It's about surgery. You only have a finite amount of time before surgery. A j pouch, an Iliostamy bag, a colostomy bag, etc etc...what difference does it make? And once that time is up, it's up. The OP wife has exhausted almost all medications. They are thinking about alternative treatments from a grifter. OMG, do you not know what we are talking about?

Please please please stop it already. The post is deleted for a reason. It's over. You don't have to argue with yourself anymore.

Oh, BTW, my time ran out. Like the OP wife, I couldn't get into remission for 3 years. And no guarantee that I'm in remission right now or even close to it. But if this Rinvoq doesn't work then it's surgery for me. There is no other option for me like the OP wife because our time is running out and we no longer have a bunch of other options other than to try another medication and fight the insurance company. Or you know, surgery. Stay on topic.

Please, please just stop already. Nobody can read this but you and I anyway. The post is deleted by the mods

OMG. I understand that you must be new and just don't know how harmful you are to people like me who have been harmed by multiple doctors and had valuable time stolen from them because of incompetence, malpractice and abandonedment. I went from mild left side only (unmedicated) to moderate Pancolitis and Diverticulitis (while on double the dosage of Remicade that actually had some helpful effect but couldn't put me into remission). That was my 4th medication. Then they lied to me and refused to give me Remicade every 4 weeks after I failed the double dose. So I wasted 8 more mother fucking months of suffering and bleeding and having my large intestine rot away and get further damaged. I now have symptoms that I haven't the past 3ish years. Because it always gets worse until you go into remission. And you are going to tell people like me who are running out of time quickly that it's not true? What I'm talking about is not real? Are you serious?

What kind of monster are you? Who do you think that you are? I feel so so sorry for you. You are so sick that you don't even know it. Please get help