[21, F, US] Just Diagnosed with Crohn's and Very Afraid!

[MirrorBride]

Hello everyone! :sign0144:

My name is Jade. I'm 21 years old and have just been diagnosed with Crohn's Disease after a colonoscopy to confirm IBS. Clearly, IBD was found in my ileum instead.

I'll be going to the GI doctor soon, and she started me on budesonide.

I have low ferritin, vitamin D, and vitamin b12.

My symptoms became more obvious about 6 weeks ago, in which I thought I had a virus. I have always had a sensitive GI system, so anything before I pushed aside. It should probably be noted that my mom has an undetermined IBD and my dad has UC. My GI doc says that my current flare is moderate.

Of course, as soon as I got the diagnosis I went home and searched online. Big mistake. Now, I'm terrified because all I see are people who have multiple surgeries, abscesses, fistula, etc. It seems like there's two extremes to this — those who have multiple issues and hardly experience remission, and those who easily obtain and maintain remission for years at a time. I'm terrified which one I'm going to be.

Anyway, that's about all, I guess! I would love some reassurance, tips, and anything else. :sign0085:

 

[DJW]

Hi and welcome.

Sorry about your new DX. In the words of my GI specialist, if you have to have it, now is the time. Lots of treatment options.

Going forward I'd suggest keeping a food and symptom journal to pinpoint problem foods. There is also a grieving process with a diagnosis of IBD. Give yourself lots of time to process it. Check out the Crohn's and Colitis Foundation of America.

Finally, keep in mind the people doing well are not posting on the net. They are out enjoying life.
Sending you my support.

 

[Fi'sMom]

Hi Jade,

I was the same age as you when I got diagnosed. I remember being terrified too, by my symptoms and the stuff I read online. I didn't have any family members with CD/UC, so I was the first and I didn't know anyone else that had it (although that changed quickly- you would be surprised how many people you might know that have it that you had no idea about). It really got in the way of my social life at times, which was miserable. I found ways around it over time- like I am more comfortable driving myself places than going with others, not eating before certain events, etc.

The course of my illness was mild to moderate for 7 years, sometimes in remission. Budesonide helped me out of any flare- I used it off and on for 4 years. I loved Budesonide- no nasty steroid effects! The first few years I was on Pentasa, but I don't think it was helpful or harmful, so we stopped it. Otherwise I managed with Pepto and Immodium. I had 7 mostly good years until this November, which I am blessed and grateful for.

Remember the course of the illness is different for everyone. I won't sugar coat it though (and you probably read it already)- 75% of people with CD will have to have surgery (of some sort, could be minor) at some point. Just something to be aware of, not to dwell on. It also means 25% don't. With this disease I try to find the positive in everything; it helps me survive. For example, I had to take my first hospital trip in November and I was pretty sick- got IV Prednisone then oral Prednisone- and a bunch of other meds- Humira too. As I sat in the hospital I focused on the fact that I still had my wits about me and could communicate with my healthcare providers, that I didn't have any fissures or abscesses, and when I left I was happy I didn't have to have surgery. I hate taking Humira because it hurts, but I don't have side effects. I feel like CD can suck you in and make you focus on all the bad, but there is a silver lining with most things. I wish you well and I hope budesonide helps you like it helped me!

 

[my little penguin]

Take breath
My Ds was dx at age 7.
If I read all the internet horror stories -I wouldn't believe my eyes .
He is now 11. Doesn't miss much school is active in sports and you wouldn't know he was sick at all.
It did take a year to find him the right meds ( biologics for him)
But once we did things took off
He gained 36 pounds and grew 8 inches in less than three years .
So not all doom and gloom.
Good luck

 

[araceli]

My daughter was dx at 14, she is 18 now, in remission and doing great in college and living life at her fullest. Like everybody else when a read all the stories I was very scare since not a lot of people who is doing good post on forums. Take it one day at the time and focus on getting in remission, learn everything you can about the disease and about the treatments available. This forum is great for questions and for support. Sending hugs and support your way.

 

[MirrorBride]

You all have been a big help!

I'm trying hard to stay positive about this, but it's hard sometimes. I know it could be so much worse and be something terminal.

Definitely hoping I can achieve remission and stay there!