Newly diagnosed with Crohn's, what to expect?

[Rissssssaahhhhh]

I'm 22 and was just diagnosed in December with Crohn's after months of sickness and diarrhea and weight loss. I'm on Pentasa and tapering off entocort. I'm just worried because everything is as normal as normal gets for me with eating, working out and being healthy again but I'm worried once I'm off the steroid entocort I'll be back to sick in no time. Not sure if I'm just paranoid or what. Had a few questions about somethings...I've seen threads on here of people going to the hospital but am concerned as to why that is and when you know to go? What is life like with crohns really like? I just want to manage it the best I can and feel still overwhelmed and dont wana be depressed. and how do you best manage it (ie working out, diet, etc.)? I try and workout three times a week or more but since I'm still in school during midterms and finals (stress is inevitable). I guess I just need help to grasp this difficult time and feel almost hopeless. I like to travel and go out with friends but almost feel like it wont be possible anymore

 

[mdd]

Hi! It's overwhelming it's ok your ok! One day. I've had crohns for 20 years. I travel, on a plane. I know every bathroom from home to down south. Their will be time when you will better. Lots of doctors visits, I bring word search, or head phones. I need to relax and focus on good stuff! Everyone is different. Keep going depression comes with it. At times I just cry and I need it. To move on !my family knows this and understand. I usually cry on the way home from the doctors office. Never know they are going to say or find. Lots of test blood work ect. I hope I help you let me know how's it's going :smile: maria

 

[AK2323]

You should be able to manage the disease outpatient with your doctor. You'll only go to the hospital when you're having a flare up. That's when you'll need IV steroids to reduce severe inflammation or, if things get really bad, surgery to remove an obstruction. Just be sure to stay on top of your medicine, find out what foods aggravate your stomach and avoid them, and try to keep your head up. There are much worse illnesses out there. There are times when the disease is going to be frustrating and limit you in some ways, but you'll be able to live a normal life, for the most part. Good luck!

 

[littlemama1]

I think there is a huge spectrum of what people experience after being diagnosed. There are people with mild disease or who respond well to meds who will never have comPlications or need to be hospitalized, and there are people with severe disease who will have many surgeries, hospitalizations, and spend a lot of time suffering. Unfortunately no one can predict what the course of their disease will be.

But if you're feeling good, embrace it! Don't let fear of the "what-ifs" hold you back from doing what you want to do. The best advice I can offer is to find a GI that listens to you and you feel good about.

 

[littlemama1]

Also... This isn't for everyone, but I started an online diary a few weeks before I was diagnosed (online diaries were the thing back in 2001...man I feel so old) and it really became a lifeline for me. It was do theraputic to have a place where I could sort through my feelings and I wrote in it regularly for a good 7 or 8 years. That and online forums like this got me through some dark days when I felt like no one I knew in 'real life' could understand.

 

[Rissssssaahhhhh]

Thanks so much everyone! Littlemama1 thank you! I'm still in shock a little with everything and trying to figure everything out with work and college is ridiculous right now! But I'm hoping I can control it since my doctor said we found it in an extremely early stage!