young and freaking out!

Lots of Hugs, flutterbies! I can imagine how freaky this new diagnosis of Crohn's is to you. My 19 yr old g'son was a healthy, happy, extremely "busy with life" teen last Dec, just before Xmas. Over night, he became very ill with what was 1st diagnosed as Ulcerative Colitis & later as Crohn's.

His stomach was sore for years, every time he ate anything, long before he was diagnosed. Just like you. His Fam. doc kept passing it off as "growing pains", "kid stuff"..... can you imagine! As if it was all in his head! I am ashamed to say that we, his family, were almost convinced of that! At Xmas he had a piece of Christmas cake & that did him in.... the rest is history.... Crohn's disease.

He was totally shocked that he, of all people, could get what he thought was an "old folks disease"! He'd never been sick a day in his life (other than the constant stomach aches, that is) ..... He thought he was invincible! We, his family, were also shocked! My grandson has still not totally accepted his disease even yet!

It's a crapy disease, in more ways than one, if you know what I mean! My heart goes out to you flutterbies! But, you hang in there, dear. I am told there are more good times than bad.

You say you are recently diagnosed with CD... have you been put on any medications to help keep it under control? I hope you have a loving, supportive family, dear.

I know you will get a lot of support here at his forum. I personally don't know what I would have done without the help of these "experienced" people. They are full of words of wisdom, far greater than anything you can read in books about your disease. Ask as many questions as you want... fire away... they will comfort you & support you, dear. Hope you are feeling better soon, flutterbies.

Hugs from Nana.

Hey there,

I was also diagnosed with Crohn's at a young age (15) and nothing sucks more than being told you have an incurable illness, just because you're going to have it for life doesn't mean you're going to be sick all your life. It may take a while for your doctors and you to figure out what meds are needed to get you better but try not to give up hope. It took my doctors a year to get me into remission after first being diagnosed during which time I was in a lot of pain and was very ill but they got me there eventually and I have had periods of remission lasting years during which time I was able to do absolutely everything all my friends and peers could do.There is every chance that could be you too! And there are so many more options available now compared to when I was diagnosed so you have that on your side too. Remember the majority of people who post on the internet are those that are ill, those that are in remission don't tend to post as much as they are off living their lives so try not to get too freaked out by some peoples situations here.

It is important that you come to terms with it though, devastating as it may be as emotional stress will only make symptoms worse, I've had counselling in the past when I was sick to help me deal with it and to reduce the stress on my mind and body which I really believe helped, even when I'm doing really good if I get upset over anything I get a stomach ache.

I hope you feel better soon and you found the best place to come to here, these people are fab and have helped me out so many times! Take care

Well, I was diagnosed at the age of 13 when I had major surgery where they removed half of the large colon and part of the ileum.

I am now 65 and have lived with this disease for 52 years (probably longer because I had been feeling unwell for 2 or 3 years before I was diagnosed). I am testament to the fact that you CAN live with this disease. Despite the bumps along the road that you will inevitably experience, keep a positive outlook. Remember who you are and what you want to do. And go for it.

The best of luck to you.

thank you all so much for answering me and listening to me complain and freak out im sorry it took so long to answer.... I'm taking pentasa which i feel does absolutely nothing for me at all... and im 17 and a baby when it comes to tolerating pain so i go to a pediatric gastro. My mother has chrons so i can talk to her about it but then again i cant because we have opposite symptoms. My mothers had CD since she was 18, but again she doesnt have the same symptoms and has not sympathy what so ever when i dont feel good because she really has been through so much. I know that i havent experienced half the pain that she has but idk im 17 and as soon as im in pain i freak out like im dieing. I cant stand it anymore i say i dont feel good or my stomach hurts every day. I get in these slums where i feel so emotionally down and that no one understands how i feel and my mothers always ragging on me and telling me im being dramatic.... "i also have to determine the difference between not feeling well, and being sick". My mothers right i do, but im not ready to. When i dont feel good I DONT FEEL GOOD im still going to freak out i dont want to not feel good and i dont want to accept the fact that its always gonna be like that.... this situation sucks =(

....thank you guys so much for answering me


(NANA... my situation is exactly like your Grandson's =/ )

flutterbies--We are with you. Hang on b/c things will get better and lighter, it's just really hard to even think about that right now. Yup, it does suck but there will be better times. And you are so not a baby--I'm 37 and cry a lot myself these days. Pain is not fun and when you don't feel "right" you just don't.

There is a youth/teen section on the ccfa.org website. Maybe worth checking out and hooking up with some other teens. Also, I highly suggest going to a teen crohn's camp this summer. You deserve the best care and to surround yourself with positive people who know what you are going through.

Anyway, I too was diagnosed at 13. My GI was the only one who would take a pediatric case and I'm still with him 25 years later! I'm glad your mom understands b/c mine had no clue! We're great friends now but she was clueless and not good at research. My GI insisted that he always talk to me and not her. That was the best thing--I slowly gained more ownership for my care. He always explained test results to me and gave me options in my care. Websites, forums like this one, and some books are a great way to start (I would just sit in the library or a bookstore and pull books down reading anything I could about crohn's). Just knowing where your crohn's is located and what's going on is helpful. After several years, I walked in to my doc's office one day and said, "just how bad is my crohn's?"--after all that I really didn't know. HA! As I got older, my GI gave me copies of my blood work and pictures from my colonoscopies. Maybe you'd be interested in having those.

In the meantime, any thoughts of talking to a therapist? Someone one who deals with folks with chronic illness. I'm thinking of this myself right now as i'm a new ostomate.

Thinking of you and sending positive vibes!

Has your doctor ever considered putting you on a stronger drug than Pentasa? Pentasa doesn't work for most people, and once you do find the right drug for you, you won't have to deal with the constant pain. It doesn't always have to be that way!! Once you start feeling better physically, I think that it will probably help you a lot emotionally, too. I know it has for me. I'm not in remission yet, but overall I'm feeling a lot better than I did a few months ago, and it has really almost renewed my love for life & energy! I hope you start feeling better soon!

I know exactly what you mean, the side effects of these drugs can be really scary. The stronger drugs CAN cause leukemia, but at the same time, you've got to know what the odds of getting leukemia would be, and your doctor would be checking you regularly for signs of anything going wrong I would hope, so you would most likely be able to recover from anything bad. I think I am going to have to switch to a stronger drug as well (I think that I have Crohn's in my small intestines too, and Entocort only helps your ileum&large intestine), and to me, the chances of getting better outweigh the risks. Who wants to be in pain every day? It is no way to live. You should read up about some of the other treatments and see if there is anything that sounds good to you. There are tons of drug options available now, like Remicade, Humira, 6-MP and Imuran, and lots of others!

Well since you are young and will have this forever, now is the time to learn to deal with doctors. Tell your parents you want a new one(if your spoiled it should be no problem:) There are a million out there and some just have no clue. Alot of people don't get better until they find the right match for their style. Good luck :)

i have 2 friends with crohns adn each of our experinces with this disease has been diferent mines was painful and needed surgery whre as my other frined get sores in his mouth and thats bout it and my other friend basically has no syptoms at all,they find it hard to understand how i cld be so sick and they are okish,my parents ar really suportive when im sick (driving in to the hospital at odd times) other than that people generally suck at being sympathic to this disease and gernerally think ur making stuff up (most of my old co-workers didnt believe i was in hospital) and the whole idea of being crohnically ill just freaked me out for ages before this i had never been in hospital or nething like that i find taking things one at a time and try not to tke things too serisouly can help......stupid disease

I was 18 when I got Dx with Crohn's. I was going through nursing school and had a child to take care of. It can be very emotional at times, but you just have to strive through it. And i completely understand about people not believing you or having no sympathy for your pain. Being young, I think it makes it harder too. But the most important thing for you to do is find a Dr. that you are comfortable with and a med that works. Of course there will be trial and error. And sometimes the risk of being on a med, out ways the risk of having a flare up.(which can led to multiple problems) And once you find a med that works for you, it is very very important to take it every day!! Good luck.

Thank you all so much for being so supportive and helping me to understand. What would you suggest for a diet? Remember that i am 17 and love chocolate =D but i do have eat better ive found that it actually does help when i stick to it... i really don't know what to exactly eat... I have like opposite symptoms of most people with crohns i can't go to the bathroom. I eat alot of fiber and yogurt. It hurts i get alot of internal gasses, flares, headaches, and neasuha. I also understand that with CD weight fluctuates in the beggining i lost 11 pounds and i look sickly im 5"0 and i weight 114 pounds i gained the 11 pounds back and i feel like i gained more i havent been on the scale but im pretty sure im 117 now =(

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Thank you all so much for being so supportive and helping me to understand. What would you suggest for a diet? Remember that i am 17 and love chocolate =D but i do have eat better ive found that it actually does help when i stick to it... i really don't know what to exactly eat... I have like opposite symptoms of most people with crohns i can't go to the bathroom. I eat alot of fiber and yogurt. It hurts i get alot of internal gasses, flares, headaches, and neasuha. I also understand that with CD weight fluctuates in the beggining i lost 11 pounds and i look sickly im 5"0 and i weight 114 pounds i gained the 11 pounds back and i feel like i gained more i havent been on the scale but im pretty sure im 117 now =(

...?