What medication for Crohns. Please answer asap

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Forum -> Health & Wellness -> Crohn's & Colitis

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amother

Whitesmoke

Wed, Feb 21 2024, 10:58 pm

My son was diagnosed the beginning of last winter. He’s been on Humira injected every second week. In the beginning he might’ve caught colds and things more often, but other than that there were no side effects. He feels great, gained 25 pounds (he was very underweight) and bh his bloodwork is perfect, as are his stool samples he is no longer anemic. He has energy. A repeat colonoscopy showed everything perfect except for one tiny area, so he’s almost in remission. We hope he’ll be in full remission soon.

amother

Emerald

Wed, Feb 21 2024, 11:05 pm

Was diagnosed with crohns twenty years ago. Started with 6 mp, steroids etc. been on Remicade for last fifteen yrs five pregnancies without any issues. Dosage and time between each infusion vary based on test results.
I do remember my doc telling me once I discussed the SCD diet with him that he had a patient who went on it and was feeling great went off all meds and had no complaints came back to get scoped to prove he was healed and doctor said he doesn’t remember the last time he saw such a bad colonoscopy results. He couldn’t even explain how the guy wasn’t feeling any pain.
I do know that they recently released Remicade as a shot which y doctor was suggesting maybe switching to which might make life much easier
If someone has healed themselves I would love to hear how it has been done and try it out as well.

amother

Oatmeal

Wed, Feb 21 2024, 11:12 pm

OP- is this for a child or an adult? For an adult there are more medication options, for pediatrics you will likely have to start from either Remicade or Humira and go from there. A huge consideration here is going to be insurance coverage. Many insurances won't cover the more expensive medications unless you have failed the other ones. My child started out on Remicade and went to Entyvio after she failed Remicade.

You need to have a doctor who you trust; your doctor should be able to explain the options. Yes, everything has side effects and it does sound scary. But most people don't have severe side effects to these medications.

twogees

Wed, Feb 21 2024, 11:21 pm

My husband has Crohn's. Took years to get a diagnosis... BH since getting the diagnosis 2 years ago and going on Humera every other week, he's been feeling great. It's very important to follow the every other week part. There have been times that he misses his dose and he has a ton of pain, other times he's good for a few days post original day of injection. Also, staying off certain foods helped- specifically tomatoes and nuts. The occasional tomatoes and nuts don't bother him as bad as they used to.

amother

↑ OP ↓

Wed, Feb 21 2024, 11:24 pm

amother Eggshell wrote:

With Crohn's, it's important to get the inflammation under control before trying other methods -Otherwise you can be left with scar tissue. Once on medication, under guidance of a good Dr., you can wean off the medication if you want.
Just want to add in - biologics are a lifesaver.
I am going to a Dr who is open to a diet to wean off, so I know I have that option for when I am ready, we have discussed it.

Please share the name of the dr. Is the dr in nyc. Contact number please

amother

Eggplant

Wed, Feb 21 2024, 11:40 pm

amother OP wrote:

Please share the name of the dr. Is the dr in nyc. Contact number please

Doctors who will work with you with scd
Dr. James George in mt. Sinai
Pediatric-Dr. Beth Lenza in Jersey Shore, near Lakewood

amother

↑ Eggshell ↓

Wed, Feb 21 2024, 11:41 pm

amother OP wrote:

Please share the name of the dr. Is the dr in nyc. Contact number please

Dr Kornbluth's practice in Manhattan, there are associate doctors that are more open to diet - Dr. George and Legnani. I think it is adult, though. I just realized you are posting in Children's Health.

amother

↑ Eggshell

Wed, Feb 21 2024, 11:44 pm

amother Eggplant wrote:

Doctors who will work with you with scd
Dr. James George in mt. Sinai
Pediatric-Dr. Beth Lenza in Jersey Shore, near Lakewood

Latest information is that the Mediterranean diet is seeing the same results, and is so much easier and less restrictive than the SCD.

amother

↑ OP ↓

Thu, Feb 22 2024, 12:12 am

Right now is is a child. I am not going to take any risk and follow dr advice. Once she is stabilized and gains weight. And becomes an adult. I want her to have other options. Even if its diet with very low dose of meds is fine. But not meds and eat all the garbage just because it passes through. BHashem May HaShem bring clarity and refuah to all. May moshia come fast and bring cure with him.

amother

↑ OP ↓

Thu, Feb 22 2024, 12:13 am

amother Eggshell wrote:

Thankyou very much

amother

↑ Tan

Thu, Feb 22 2024, 12:32 am

amother OP wrote:

Amen!!!

I love your levelheaded thinking. May Hashem guide you and may your daughter feel better and get to a point of remission. Don't forget to give yourself the time for some self care amidst this.

Hatzlacha!

amother

Blueberry

Thu, Feb 22 2024, 12:36 am

I was off meds completely for 12 years but eventually I had a flare and have been on meds again since. I won't try going off again even though my doctor had mentioned it as a possibility because it's just not worth it. Almost all patients will eventually flare again if they are not on meds and it can be harder to control the second time. It can also take a while to get through testing, get the right meds, and get it under control and it's not worth it for me to take the risk.

The most important thing is for you to be using a doctor that you trust and will listen to. If you need help with that there are medical referral organizations that help with this.

amother

↑ OP ↓

Thu, Feb 22 2024, 6:27 am

amother Tan wrote:

OP- This not a contradiction to my previous post. I used and still use the medications when need be.

Which medication can be used as needed and does not cause body to build antibodies against it? Which are you using as needed?

amother

↑ OP

Thu, Feb 22 2024, 6:28 am

amother Tan wrote:

Amen
Thankyou

amother

↑ Begonia ↓

Thu, Feb 22 2024, 7:24 am

amother Skyblue wrote:

So I told you that I didn't take scans so I can't answer you for myself. But I have worked with children with autoimmune diseases who HAVE totally healed. It is NOT part of their makeup. Autoimmune disease is NOT part of their genetic makeup. You absolutely can stop the body from fighting itself.

I personally don't believe that Hashem created people's bodies to self inflict harm. I believe that if that happens there is a root and a reason and once it is discovered the body will function optimally. If you choose to believe that it is a part of you and that belief serves you. Then by all means. Keep it. The belief that my body is doomed and that the only way it knows how to live is by fighting itself does not in any way serve me and I choose not to believe it.
And waddaya know. I am seeing more and more people following what I believe in.

You will only see what you believe in. Hence I am telling you that no matter what I say You will only believe what you want to until you decide that the belief doesn't serve you and you are open to finding a new one. But like I said, I am a big believer in if it aint broke don't fix it. So if your life is working even with your autoimmune disease, then you're good and there's nothing to discuss.

Listen. I believe that stress and trauma cause a lot of diseases. I believe Hashem wants our best too, but unfortunately there’s galus and diseases that sometimes the body cannot fix on its own.

When you say that you have worked with children with autoimmune diseases and they were healed you’re not being specific so I can’t respond. But autoimmune diseases are not cured- they go into remission.
I really am not knowledgeable in genetics and such, but when u say completely healed you need to come with proof of scans and bloodwork. before and after. Not just feeling better, as clearly indicated by the poster above whose doctor said he saw such a terrible colonoscopy after a patient went off meds but was feeling great.

It’s totally not a shocker that you are seeing more and more people believe in this. Our society has a lot of this natural stuff spreading and we think we know it all. It doesn’t mean that the rate of belief we see corresponds to increasing health.

I know someone who followed different naturalists and ended up needed to resect a part of her intestines. A Teenager! And it could have been avoided!
If it’s not an autoimmune disease then yes, it can be completely healed.

Bh my husbands crohns is in remission and we daven that it should continue this way for always.

The reason why I feel the need to respond to you is because op is vulnerable right now, as are others that may be following. And I feel a duty to clarify information that can be damaging.

amother

↑ Skyblue ↓

Thu, Feb 22 2024, 8:39 am

You are right amother Begonia. You are 100% right. Over night I was feeling terrible that I posted this on this thread. This should have been a discussion for some other time. OP, I personally would not recommend starting natural things at this point. For sure you would continue to medically treat the child until he/she is out of danger and ONLY under the care of a doctor.
I had come on from a place of passion watching others say that it is incurable and therefore responded. I realized that it probably was misplaced because I do not want to have any part in OP trying out energy work - I don't believe that is the right thing at this time.
The only time to try energy work is if medicine is not helping or once stabilized if you want to wean off and only under a doctors care.
I just got bothered by the fact that people think it's not possible to heal but this was not the time or place to discuss it here. I was responding to others on the thread and not the OP.
I apologize OP. I actually appreciate how balanced you are on what you mentioned your plan of action is. I hope you have hazlacha and see results FAST so that you and your son can get out of this place.

amother

↑ Begonia ↓

Thu, Feb 22 2024, 8:51 am

Skyblue wow, I’m inspired by your message🙏🏻
May Hashem heal all cholei yisrael with moshiach now

amother

↑ Skyblue ↓

Thu, Feb 22 2024, 9:18 am

amother Begonia wrote:

Skyblue wow, I’m inspired by your message🙏🏻
May Hashem heal all cholei yisrael with moshiach now

Glad it inspired you. Smile

My message in one sentence was that crohns and autoimmune is curable. I have helped people who have been cured. BUT and it's a big one, I only help people who have exhausted the medical route. And therefore this message was not for OP. It was for people who are on medicine or diets but for some reason it's not working for them. And it was to inspire hope for those people. It was never meant for OP.

amother

↑ Begonia ↓

Thu, Feb 22 2024, 9:23 am

amother Skyblue wrote:

Glad it inspired you. Smile

Yes, it was inspiring to see that we can have passion and also see beyond it and the circumstances 😍

I would say remission but that’s where we disagree 😉
Scans and bloodwork showing no signs of the disease post stopping meds and diets are needed to prove cured. It hasn’t happened to anyone in the yachi Moskowitz following and it hasn’t been proven yet.
Hatzlacha in your work!

amother

↑ Skyblue

Thu, Feb 22 2024, 9:27 am

amother Begonia wrote:

I believe it's possible that we are both saying the same thing and calling it something different. What do you mean when you say remission? Is the inflammation gone and there is always a chance of a flareup - meaning the inflammation coming back? Or are you saying the inflammation is always there but just under control?

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