Help with teenage son- just got crohn's diagnosis

amother

Emerald

Sun, Jun 21 2020, 11:11 pm

Our_life_with_crohns
People send questions anonymously I post them anonymously
: And everyone response in the comment section
HI I have got crohns plus had surgery 23
Years ago bh I lead a, regular life besides going on the toilet often in the day
Mu daughter was diagnosed when she was 17she takes different medication she has more joint pains which is difficult some days
I posted her Instagram page if that's any help u can post anomously and people will try help u don't worry wants he's controlled with diet or medication he will lead a regular life

amother

Slategray ↓

Sun, Jun 21 2020, 11:42 pm

My 10 yr old dd was diagnosed at age 7.
She is on meds
She went from being a weak frail child in constant pain (stomach and joint) to a child full of energy, healthy, pain free. Her hair Is finally growing. She has the energy to ride her bike. She doesn’t miss school.

May you also be able to go forward from this diagnoses to find your answers.

(I have 2 siblings diagnosed as teens and 20 years later they are both healthy med free parents).

amother

Magenta

Mon, Jun 22 2020, 9:05 am

amother [ Jetblack ] wrote:

I have 2 siblings with chrons. Check out JCC organization. They will give you best advice. And also, my mother tried natural and that almost killed one of my brothers so be aware.

If by natural you mean diet, diet can be very helpful. I would just do it WITH meds, despite what some people will tell you.
My son was a little younger and bH is doing great. the new GI we saw thinks BECAUSE he went on a meds cocktail with the diet. And the diet's hard for kids.
Crohns hits multiple parts of the system in different ways. There are several classifications of drugs. Similar cocktails will be prescribed but there will be some differences.

What you doctor is likely to do is prescribe steroids and another drug so that as your son is weaned off the steroids, the other drug will keep things under control. I've heard that Imuran - that class of drugs - with the biologics can be dangerous in the long term. Something to look into.

What is BH amazing is that there are new options. I might have the science wrong. Biologics like Remicaide are TNF inhibitors. There are similar drugs that are JAK something or other that are more targeted with fewer possible reactions or side effects. You can ask your doctor about the options.

People have normal lives with Crohns. Right now, this is big for your son, and get his whatever support he needs. If there's someone in your town with Chai Lifeline, pick their brains or call Chai Lifeline for how you can help him. (They deal with chronic conditions too.)

Hatzlacha!

amother

↑ Slategray

Mon, Jun 22 2020, 9:09 am

Also going natural if there is colon damage isn’t the solution on its own.
My dr offered us a mess free solution that my dd could go on a liquid diet until her colon and esophagus healed and then eat a diet similar to SCD to maintain but warned there will be occasional flare ups.

You have to be extra careful with teens and preteens. If crohns isn’t handled correctly it can delay or stunt puberty and permanently stunt growth. (My sister didn’t get her Period until she was 16 and they got a handle on her crohns). During the development years you have to be extra on top of their health.

For us we chose not to go the natural route because we felt after suffering and missing so much school my dd has to be normal. Not on a liquid diet and hooking herself up at night. And not eating food at siyums and parties with her friends. It was important for us for her to be as ‘normal’ as possible. She eats everything now.

She recently had a follow up colonoscopy and her colon and esophagus is that of a healthy person bH. For us meds was 100% the right choice.

You may also want to decide who to tell. We keep it semi private.