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Forum -> Children's Health

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amother

Mon, Feb 19 2024, 10:05 am

My child is in hospital with similar symptoms. Hoping it’s just a one time episode. Waiting on test results. But my heart is in pain. I am terrified of future. They said if it’s one of IBD then it’s meds daily. God forbid

Please help me alleviate my fear. I cannot function or eat. I am so worried.
How do you manage if you have one of above?
How did you find out( what symptoms tests)?
Are you on daily meds? How long?
Diet?
Can it be healed and cured completely? Wee you successfully able to and how?
Anything else you can share to help me understand and navigate this. Please 🙏🏻 please

amother

Powderblue

Mon, Feb 19 2024, 10:10 am

Not me but my husband has crohns. He was diagnosed in 5th grade and it took them some time to find the right treatment. He gets remicade every 8 weeks (Iv infusion, done at home with a home health nurse) and lives pretty much symptom free and is not restricted in his diet bh. He doesn’t have such a severe case but definitely moderate and it’s very manageable. Hope you find the thing that works for you!

amother

Powderblue

Mon, Feb 19 2024, 10:12 am

Also it’s a chronic condition which means it can’t be healed but the symptoms can be managed. I’m sure it’s scary not to know but many many people (like a lot of Jews lol) live perfectly normal functional lives with these conditions.

amother

Wine

Mon, Feb 19 2024, 10:15 am

My child has Chrons, diagnosed pretty young after having chronic diarrhea, after a course of steroids which was rough he is on daily meds now which is annoying but no side affects bh and is living symptom free since. It’s a hard road but bh a manageable condition today

amother

Glitter

Mon, Feb 19 2024, 10:17 am

I’m so sorry you’re going through this. It is so difficult to watch your child go through this and worrying about the future.
Do yourself and your child a favor- keep an open mind. Be open to ALL types of treatment. Be open to hear alternatives of conventional medicine and treatment.

amother

Lavender

Mon, Feb 19 2024, 11:18 am

If you're looking for a more natural approach, try Breaking the Vicious Cycle by Elaine Gottschall.

BUT.

It's a hard diet. My father opted for meds instead of following the diet. That being said he does know people who do follow the diet and don't need to take meds anymore.

ETA it's chronic. It doesn't go away but it can be managed.

amother

Hosta

Mon, Feb 19 2024, 11:56 am

My child was not diagnosed with chrons or colitis but has very similar symptoms. She takes medication daily to alleviate stomach pain/cramps. She started taking meds when she was 12. Now she’s 16. At one point she got frustrated and tried to stop taking medication but her stomach got so much worse over those few weeks that she never tried that again. Unfortunately we don’t have a diagnosis. They just call it ibs. At least we have a medication that works for her.

amother

Nemesia

Mon, Feb 19 2024, 11:57 am

My dh had a moderate-severe case of Crohn's. He was scheduled for surgery to cut out part of his intestines that doctors believed was too diseased to ever heal. He has been on the Specific Carbohydrate Diet for years, never ended up having that surgery, and is med-free bh. There are many pathways to healing. Diet is one piece.

amother

Junglegreen

Mon, Feb 19 2024, 12:39 pm

Lots of koach on your journey going forward!

I have crohn’s- diagnosed in 6th grade -11 yrs old. Extremely severe. Started off on strong steroids, some other meds as well. Added on the SCD diet as well. Diet needs extreme discipline and takes a lot of willpower. Worked wonders and went into remission after 3 yrs or so.

But, it is chronic and life happens so my journey isn’t linear- lots of bumps and curves along the way. Had a flare a bit later, restarted diet, low dose of meds etc..

Worked for many more years.

Recently switched to remicade infusions - diet was becoming a bit much to maintain. Bh reacted well.

There are many resources and help out there.

Good luck!!

amother

NeonYellow

Mon, Feb 19 2024, 12:47 pm

It’s not daily medications it’s usually injections or infusions every 2 weeks or up to 8 weeks depending on the protocol. And that excludes celiac, for that you ‘just’ need a gluten free diet no medication typically.
We got the diagnosis through blood work, stool test then colonoscopy/endoscopy.
We were comfortable going to the medication route and chose not to explore lifestyle/diet changes becaue it was too overwhelming and too much trial and error until you maybe get results but it is something people do if medication is really something you want to avoid.
It was very upsetting to get a diagnosis but in the frum world it’s extremely common and having support helped a lot.

amother

Slateblue

Mon, Feb 19 2024, 12:56 pm

BH not me, but I have siblings with celiac and colitis. If you follow a strict diet, celiac is usually totally manageable for most. Crohn's and Colitis are more tricky. My sibling with severe colitis often has flare-ups, totally not controllable just by diet. I think a lot of it is stress-related, actually. And trying to keep all inflammation down. However, when it's not a flare time, sibling is totally able to function.
I don't know their specific medication regimens, but honestly that is NOT the biggest thing to worry about.
Hatzlacha and refuah shleimah to your child!

amother

Mon, Feb 19 2024, 1:30 pm

amother Nemesia wrote:

How did you avoid surgery. And please explain more about this diet. Was he under care of someone while following this diet to monitor flare ups ?
Thankyou

amother

Nemesia

Mon, Feb 19 2024, 2:36 pm

amother OP wrote:

How did you avoid surgery. And please explain more about this diet. Was he under care of someone while following this diet to monitor flare ups ?
Thankyou

He avoided the surgery with the diet. He basically eats most fruits and vegetables, nuts, some soaked legumes and seeds, honey, chicken, meat, eggs, and some dairy.
Yes, he was followed by his gi while starting the diet. Bh the flare ups were few and far between.
Over the years, he has done other things toward healing like sarno to address stress and how it affects his body, craniosacral therapy to promote better digestion and reduce inflammation in the body, supplements/herbs/healing teas.
But the main thing that healed him was the diet.

pizzapie

Mon, Feb 19 2024, 2:53 pm

There is a huge range of how severe IBD (crohns or UC) can be and how well it can be controlled. By the way that your child is presenting- with an acute flare that landed him/her in the hospital, this sounds very severe and will likely not be able to be controlled (at least initially) through diet alone. Your concern at this point needs to be primarily on recovery from the flare through whatever means is determined to be the most efficient. If your child's doctors are discussing surgery as an option that means it's pretty severe. Medication is a must at this point. Likely not just daily meds (like prednisone) but IV infusions as well to control the flare. Now is NOT the time to refuse medications that can potentially save your child's bowel and prevent surgery.

Wishing your child a complete refuah sheleima!

amother

Dimgray

Mon, Feb 19 2024, 3:18 pm

I have crohns- diagnosed at 25. I was on various medications for 4/5 years and the last two and a half I have been symptom free on no medication at all BH. So yes remission is possible but I also know it could flare up any time.
I don’t know if adult diagnosis is different to childhood though.

amother

NeonYellow

Mon, Feb 19 2024, 3:26 pm

amother OP wrote:

How did you avoid surgery. And please explain more about this diet. Was he under care of someone while following this diet to monitor flare ups ?
Thankyou

This explains the diet. Scroll down you’ll see what is and isn’t allowed. I know adults who’ve had success with it but it’s extremely limiting.
https://my.clevelandclinic.org.....-diet

amother

Mint

Mon, Feb 19 2024, 3:40 pm

pizzapie wrote:

Yes, huge range. But my son was first diagnosed at age almost 17 when he had acute pain and was hospitalized. He does not have severe Crohn's, his case is mild-moderate and is completely controlled BH BH by Humira which he self injects every other week. After his initial diagnosis he was monitored for 2 years and then began using medication when it was clear that he would not go into remission without it. He never had a moment of pain since the initial episode bli ayin harah and he is in complete remission bli ayin harah. If you are in New York I highly recommend Dr. Marla Dubinsky at Mt. Sinai's IBD center. She is top in the field, very compassionate and open minded to try to avoid medication. This is not the end of the world, though I know it feels that way to you today. I was in your shoes. Now, my son is happy and healthy, married with his first child on the way iyH! No problem with shidduchim like I dreaded for years!

amother

Ballota

Mon, Feb 19 2024, 4:05 pm

My daughter has crohns disease. I believe that stress causes flare-ups. Whenever my daughter was having exams or any stress related period in her life, she had terrible symptoms. I enrolled her in a gym with a pool, and swimming helped her a lot.

amother

Mon, Feb 19 2024, 10:15 pm

Thankyou every one who responded. It brings lots of clarity to me. Thankyou for sharing doctor names.

anonymous mom

Mon, Feb 19 2024, 10:41 pm

Hi OP (and anyone else here), I don't know if this is relevant or useful to you, but I wanted to share a frum heimish resource for girls with chronic health conditions. I know someone who is part of this organization and benefits tremendously.

https://myteamsupports.org/about-us/

Besoros tovos!

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