Recently Diagnosed With Crohns

I am a 17 year old girl, who has just been diagnosed with crohns. I guess I don't really understand the disease, how it happened, why to me. I had a colonoscopy that determined the diagnoses, then started on prednisone and have been on it for more than 3 months. It's caused my face to break out horribly to the point where I don't really like to even leave the house. My GI started me on some type of medication that started with an M, I don't remember exactly. It made me extremely sick, was in the ER for several hours with a fever that lasted 4 days. This is when reality really sunk in for me. I know it was the medication that made me that sick and not the crohn's, but it was a huge slap in the face. I am now starting Humira, and the at home injections are even more or a reality check. I can't believe I have to deal with this for the rest of my life. I know so little about this disease that I don't know how to make myself better and get control of it. That's why I am here, on this site, posting. I want to gain control and understanding of Crohns. If anyone has any tips on how they came to turns with their diagnoses and coping skills they used to deal with the depression of it all, that would be extremely helpful. Also, ways that you personally learned what foods worked for you and what didn't. I am having a hard time controlling my diet. Pretty much, any advice you could possibly give would be extremely appreciated. thank you.

I'm sorry about your diagnosis. You've had a rough introduction which would make somebody twice your age depressed. I'm hoping that the Humira will put you in remission and you can get on with your pre-Crohn's life.

Don't fret too much about diet. There's a lot of shysters out there who claim you can heal Crohn's with diet. You can't. Just do the best you can and don't beat yourself up for eating the 'wrong' things. Eventually you'll find the diet which works best for you in minimising symptoms, but in the meantime you can't make the actual disease itself any better or worse.

As depressing as this may sound, Crohn's will eventually become your new 'normal'. If you're lucky that normal will be pretty close to your old life (if never exactly the same); if not, well, you will still adapt anyway, because people do. You will probably better appreciate the good times than people who have never known what it's like to be sick or ill for a prolonged period of time.

As to why the Crohn's happened, it just did. You drew the genetic short straw and were so prone to getting Crohn's when the conditions were right. Even if you had known you were genetically susceptible, there is little you could have done to have prevented it from happening.

The depression will get better. Don't give into it completely, but don't try to fight it too strenuously either: it's there for a reason. But if you think it's reached a point where you can't cope with life anymore (e.g. you're skipping classes or work, avoiding people, having suicidal thoughts, constantly numb or crying etc.), then go to your GP.

Finally, if you've got any sympathetic family members or friends, then do talk to them. You shouldn't have to face this all alone.

The way you're feeling right now, (especially after being diagnosed at the age you're at right now), is very normal. Right now, it's almost like a state of shock having such a huge weight dropped on you.

The good news is, they've made tremendous advances in treating this disease, and in your lifetime, there will be many more.

Before diagnosis, Crohn's can get out of control, and make you feel pretty bad. Then the diagnosis hits, and it feels like you've been run over by a bus. Once the meds get working, and your symptoms lessen, you'll transition to a maintenance medication, (Humira), and you'll then feel a whole lot more normal.

Don't worry about the side effects from Prednisone that you're experiencing. They'll all resolve once you wean off. Usually, you're on a descending dosage for about 8 weeks, then there a half life for a couple of months. After that if will be out of your system.

The only other thing I want to tell you is, while the internet is a massive resource for anything, it can be filled with misinformation, and outdated information. Don't let it scare you. You've come to a fantastic forum here for guidance and advice. Try not to worry, things WILL get better. You WILL resume a very normal life. Keep asking questions here. There's a lot of really good people here with a lot of experience in dealing with this disease.

Best thing you can do is exactly what you are trying to do here- keep learning about it. You can't make yourself better on your own. Follow the directions of your doctors and get a second opinion if you don't feel confident in the treatment plan. It takes time to grieve over your life changes and a long time to adjust. It takes time to sort out the facts from myths on the internet so you must be careful. Look for websites like the CCFA, The Great Bowel Movement and Inflamed and Untamed. All are good resources. Be careful of anyone that suggest quick fixes and diets they can do more harm than good. I took 6mp which was probably the one you felt sick on. I did as well and only take half a dose along with remicade. Once the humira works you should be able to get off the prednisone and many of its effects should go away. I was on humira for about a year but developed problems with it and switched. It's part of life with the disease is also knowing that side effects happen. Not frequently but they happen and you deal with them as they come. I see life with crohns like a surfer. First you learn how not to drown, then how to go with the waves of life, then stand and really take control of things but this is a cycle and we all inevitably fall down every so often and have to start over. Find things you enjoy doing even when your not well that can feed your soul whether it is reading, writing, art or crafts. Spend some time investing in yourself so that you can weather the bad days. Not everyone will understand but you will find those that do and they are your real friends.

Hi there,
I'm so sorry you are going through this. I was diagnosed at age 15 and I remember the whole thing being very overwhelming and scary. I'm 22 now and have been in remission most of the time I've been diagnosed. It wasn't an easy ride to get there, many trials of medications but humira was what did the trick for me. It's normal to feel down and overwhelmed about this new diagnosis but just know you aren't alone, talk to your friends and family about it. I had a great support system and I think that honestly helps a ton. Since finding out I have crohns it has pursed me to become a nurse to help others going through chronic diseases. Ultimately it's an awful thing to be diagnosed with an illness that doesn't go away, but it doesn't define who you are. Don't worry, you will get through this.

I was diagnosed the summer before HS so I feel your pain (now 31)

I would stay away from alcohol and coffee if you can - for me those two things were the worst

I have been on Humira for 8 years 1 injection per week and it has worked very well thus far

Its a tough road and it wont be easy but just know you have support and the doctor will figure out what works best for you - not sure you need to be taking steroids AND humira - once it begins to work it should work (it did for me) without the assistance of other drugs

Feel free to ask any questions as I know it sucks being so young and watching your friends live what you perceive to be a care free lifestyle

Good luck!