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How is Crohn's going to effect me

Im a 16 year old male and i just learned that i have Crohn's disease i don't know much about it and my doctor isn't very helpful and almost seems like he doesn't like me. i have lots of questions and i feel like im kind of alone in this one. i went about 3 months thinking that i had IBS because i haven't had any severe problems yet really. i have no idea what to expect and im kinda scared. im just wondering how is this going to effect me as it progresses and what kind of problems do you guys have and what kind of tips can you give me, it'd be great to here from people who experience this.
 
I want you to know you're not alone. I'm also recently in the early stages of being diagnosed to and it's scary and it feels like people aren't listening (and maybe they really aren't sometimes we have to keep that in mind.) I'm 32 and I am still sometimes a mess of tears lately with everything medical that has been going on for me, and it's ok to be upset.

I haven't had severe problems yet either (being evaluated for more inflammation of my right side currently just got back from the GI actually!) but I know it can be terrifying to see all of the things that can happen.

I know for me finding this forum and finding CCFA helped a lot. There's also a link to a particular site blog post I found (but I can't link it yet because I'm really new!) but the title of the article is Who Am I Now?: Living with an Autoimmune Disease.

I know others with more experience will talk about how Crohns affects everyone differently and there are so many tips and things to try. I'm going to assume that you working with your doctor to find the best treatment will be the best option for you, but reading other's experiences as well is a wonderful way for all of us to gain an understanding of what we might expect to help lessen the fears. A bit of vicarious learning so to speak.
 
my doctor isnt much help he pretty much just told me i have it and then prescribed me some medication and that was it. gotta love the feeling that you cant talk to the person supposed to be helping you :/
 
I don't know what your support system is like so I don't want to make assumptions, but are you able to enlist a family member or support to help advocate for getting more patient education? It might be that your GI (is it a GI or PCP?) is so used to this experience, particularly with someone who may have a "mild case" (right being told you have a chronic disease even if it's mild feels amazing pants right?! but I digress about bedside manner) that he might forget to provide you with more extensive information.

One of the things I have done recently is I am signing up for a case manager through my insurance company and also demanding specific "patient education " appointments with my providers. I don't know if that's something you can plan for (maybe seeing an FNP or medical assistant at your doctors).
 

kiny

Well-known member
There's not really much to predict for you or others. You know those machines where you drop a ball from the top and it keeps hitting pins and can go left or right, that's pretty much how crohn's disease goes.

Some people stay well without much medication. Some do not.
Some people get strictures. Some do not.
Some people get fistulas. Some do not.
Some people have ileal disease. Some have also colon involvement.

You can start reading about all of those things if you like, but just don't get worked up about it. It's pretty much out of your hands, the best advice I can give is to follow your doctor's advice so you can avoid some of those issues.
 

DJW

Forum Monitor
Hi. I agree with kiny. It easy to get worked up over things that may never happen. Some have mild symptoms some moderate and some sever. Keep us posted. We're all here to support each other.
 
he's a GI and he made it very clear that he normally wont see kids my age but my doctor who happens to be friends with him referred me to him. and ive talked to my mom about it and she seems to think that theres not really a problem so im just kind of thinking that ill have to learn what i want through the internet
 
You wrote
i don't know much about it and my doctor isn't very helpful and almost seems like he doesn't like me.
Can you change doctors?

It's important that you have a good doctor who 1) is knowledgeable about Crohn's 2) takes time to answer your questions and gives you all the information that you need and 3) responds in a timely way to calls/emails and 4) is someone you feel comfortable with and preferably like!
 
You wrote

Can you change doctors?

i talked to my mom about him and told her how i feel but she doesn't think its necessary. she thinks its just me being a certain way and since im so young things like that are out of my hands
 

Tesscorm

Moderator
Staff member
Hey jaedon

My son was diagnosed when he was 16. As was said above, everyone is different... crohns is very frustrating in this sense... it effects people differently, meds prescribed can be different, your experience with a med can be different! :ybatty:

My experience with my son is that it hasn't changed his lifestyle very much. He did enteral nutrition (a nutritional formula treatment) to induce remission and stayed with the formula as a supplement for 18 months. In February, he started remicade as not all inflammation had disappeared.

For the most part, he has continued on with his life without 'much' change. He does have his remicade infusions now, takes some supplements and is a bit more careful with his nutrition.

What medication are you on? Where is your crohns located?

It's very common for crohns to have a genetic component - do you have any relatives who also have crohns or ulcerative colitis? They may be helpful to you when you have questions.

You're right in that at 16 it's a bit difficult to simply change doctors but you can certainly start to educate yourself about crohns. This is a great forum - LOTS of knowledgeable and helpful members! And, look through the various subforums - lots of info on treatments, diets, tests, etc.

There is also a teen subforum - you might find that helpful as well!

Good luck!! :)
 
my doctor isnt much help he pretty much just told me i have it and then prescribed me some medication and that was it. gotta love the feeling that you cant talk to the person supposed to be helping you :/
If you don't like your doctor's bedside manner, I urge you to seek out a new GI! I mad the mistake of just going along with the doctor that my GP referred me to assuming he knew which doctor would be best for me. I was diagnosed with Crohn's disease in my early 20's. that first doctor told me nothing about my illness, and he made me feel uncomfortable and stupid. Thankfully he retired. The 2nd GI told me, you're a smart girl" and gave me medical journals to read (I hate to say this, but back then,there was no Internet.:eek2:)

I was medication free after being pronounced in remission for 4 years, and then had flare ups of inflammation after each of my 2 pregnancies. Unfortunately, due to some moves and changing of GPs, I got lost in the system and have sufferred needlessly for the past 18 months-2years accommodating my Crohn's and not realizing that I needed medical intervention. I have learned more in the past 4 months about Crohn's then my previous knowledge base over 20 years of living with this illness.

So again, I urge you to actively seek out a doctor that will take the time to answer your questions and help you feel confident in their knowledge on how to treat you. I wish I had the courage as a 20 something to do so.
 
Tesscorm im on pentasa and dycyclomine and its in my stomach
and thanks to everyone for being so supportive it really means alot to me to finally learn about this
 
I would INSIST on changing GI's. it sounds like your disease is not too bad right now - if you can find a doctor that you feel comfortable with and you can talk to, ask questions, be open with etc. it will be a huge advantage for you. With a good doctor you can keep your body under control and carry on like nothing ever happened.
 
I would ask your mom to let you change doctors. You need someone who will listen. I got it when I was 14 you will be some weaker and sick but just keep living life like normal. I have had it 22 yrs
 
I too am newly diagnosed Crohn's disease at the ileum. My journey has been long and ONLY when I changed GI doctors did I finally get the answer to my illness. I can't believe all the time money and testing my other GI doc put me thru but never ever considered Crohn's.

Now I have the same questions as you. I go for more testing on Thursday to see how bad things are in my small intestine. Can't wean from the 40mg prednisone yet, hoping to start weaning at a smaller taper than before. Other meds? All the same questions you have, so you are not alone.

I think I am older than most because I am 54 yrs. young and most seem to get it younger in life. What is the prognosis for older people? Lots and lots of questions. I'm right there with you.
 
I would look for a support group in your area, you can look under the CCFA website. Not a lot changes I have it bad but don't let it rule my life. You will have good and bad days. Having a good GI helps
 
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