Diagnosed with crohn's at 16

[Rasdaan]

A few days ago I was diagnosed with crohn's disease. I was sick for months, so I was so happy to finally know what was wrong, and I thought that all I would have to do was take my pills for the rest of my life, and everything would be fine...Boy was I wrong. I have horrid anxiety issues so when the doctor told me some things, I lost it and started crying. I'm scared of my pills side effects, I'm scared about getting multiple blood tests, and i'm extremely scared about the possibility of getting surgery from time to time.

I have been freaking out all day, guess im just taking it all in. :/ How do you guys deal with the anxiety? And do you guys know if it is possible to prevent ever needing surgery?

Sorry, guess i'm just paranoid

 

[Jennifer]

Hi Rasdaan and welcome to the forum!

I'm glad you got a diagnosis but am sorry that it is Crohn's. Just remember that Crohn's is treatable. Yes the possible (I say possible because there's no guarantee that you will get any) side effects from medications are scary sounding for sure but many times the medication is stopped before any permanent damage is done if any. I've been taking meds since I was 9 years old so maybe I'm a little more relaxed when it comes to taking medication but I've personally never had anything scary happen to me. I've even had meds where I had no side effects at all (Asacol, 6MP (when not at a high dose) and Entocort for example) and the ones I did have side effects from weren't terrible and I was able to stop them and switch to something else.

The trial and error of meds is not fun. I'm doing that again myself but it is possible to find the right combination for you and go into remission for a long time and there are many people who have never had surgery. After having Crohn's for 22 years I've only had one resection and it put me in remission for 14 years. There are many on the forum who have been in remission longer than that. While avoiding surgery is a wonderful goal to aim for just know that surgery is only done when needed and it can definitely give you a better quality of life (hopefully you wont ever have to).

As for blood tests, needles never bothered me to begin with so I got used to having it done pretty quickly. I've always had blood work done once a month so its just become part of my life really. Sometime you can go up to 3 months or more without blood work but it really depends on what medications you're on. With certain ones you'll want to have blood work done often to make sure that everything is ok. If you're concerned or scared, maybe you could have someone come with you when you have your blood work done until you become a little more used to it?

How do I deal with the anxiety? I come on here and talk it out. Before I became a member of this forum I had no one to talk to. Now I have thousands of people from all over the world to talk to who have been there and done that. We're all here for each other 24/7. :ghug:

We have a section for teens and a section for mental health support if you'd like to check them out.

Did your GI suggest a treatment plan that they'd like you to consider? Do you have meds in front of you that you're afraid to take?

 

[Rasdaan]

Thank you so much for taking the time to post Jennifer! Your words helped me a bit in calming down.

I have had this about 4 months before reaching a diagnosis...So on the positive side...it can only get better from here right?

Another thing that I'm a tiny bit worried about is bowel movements. They are somewhat painful for me, and my doctor told me no more stool softeners...and on top of that, I now cannot have high amounts of fiber...what exactly do you do for that?

 

[Jennifer]

So you're dealing with constipation more or do you have a narrowing that's slowing everything down?

For me if things start to slow down I usually have some of one of my trigger foods (one of the foods that I know triggers diarrhea for me). I only have a little bit so things don't get crazy.

But there are other things you can do like drinking a lot more water, limiting foods that contain a lot of sugar, cheese and processed foods which can add to the constipation and a little more exercise to get things moving along. This is mainly for constipation though.

If its a narrowing that's slowing things down then definitely increase your fluids and try smaller meals more often to see if that helps. If its a narrowing then laxatives and fiber tend to have a negative effect (instead of going out the right way, you may wind up throwing up instead because everything bottlenecks and builds up and we don't want that).

What other symptoms do you have?

So on the positive side...it can only get better from here right?

Stay positive. :hug:

 

[Skymama]

my doctor told me no more stool softeners...and on top of that, I now cannot have high amounts of fiber...what exactly do you do for that?

My son who is also 16 has had the same problem. He found drinking a lot of water will help but sometimes he has to have Miralax.

 

[Rasdaan]

My son who is also 16 has had the same problem. He found drinking a lot of water will help but sometimes he has to have Miralax.

Water seems to be key for many things I think I should probably add apple juice, or prune juice into the mix and hope that it helps.