Just diagnosed..... need advice

Please hang in there! You may feel depressed because it is such a big adjustment to make. The experiences of those on this forum are not necessarily ones that you are doomed to repeat, and your disease may go into remission for long periods of time. It's really hard but things will get better... And you have a whole group of people right here for support. Feel better!
It also may help to talk to a counsellor or family member about how you're feeling, sometimes all I need to make myself feel better is just to be able to vent to someone and get some perspective.

I think it's normal to be scared, I know the feeling, it seemed like overnight I went from being healthy to the sickest in my life. I first got sick nearly 2 years ago (I was 19 at the time), and got diagnosed earlier this year. I wouldn't worry too much over what you read here, because everyone goes through different things and deal with things differently. A lot of the people here have VERY severe cases. If it's any reassurance, I wondered before if I'd ever feel normal again, and I'm back to leading a perfectly normal life like I did before I got diagnosed. I have some pain still, but nothing compared to before (I'm also not in remission yet). If anything, I'm almost thankful in some ways that I have this disease - it has changed me as a person for the better, and made me a lot stronger. I hope that you'll feel this way about it eventually, too!

Things WILL get better - a lot of people with Crohn's go YEARS between flare ups (there are people who have 1 flare every 10-20 years, probably more than that too!). I think the initial flare(s) are the worst - once you know what's wrong and they can treat you, it usually gets better, even if it doesn't seem like it will now. Most people will deal with some sort of health problem during their lifetime, and yes, Crohn's can be difficult to deal with at times, but it's something that can be controlled very well for the majority of people.

Trust me, things will get better. I actually was relieved when I got diagnosed, so I guess I've been lucky - everyone seemed to think I had cancer because of how sick I was, so I was grateful that it was something treatable and that isn't terminal. Before I got diagnosed, however, I remember thinking that it would be easier to just die than live the rest of my life this way and wondering if I'd ever feel normal again. There were days where I wondered if I had just forgotten what it felt like to feel normal and I was just going crazy. I was only able to stay awake for about 3-4 hours a day (max), dropped below 85 lbs, couldn't eat or even drink water, and here I am, feeling almost completely normal and enjoying life more than ever.

I hope you feel better soon, it WILL come though :) Crohn's is a fairly common disease, we just don't hear too much about it, so really, what you see here is a lot of the bad. Most people won't come and post on this forum if they're feeling great and symptom-free, most of the people here are going through really tough times or have very severe cases. This forum is great for getting information and having people to talk to though :) It really helps to not feel alone sometimes!

Don't take the experiences of others on here as typical, the people doing great etc tend not to post much or at all as they're off living their lives and not posting on forums! So don't freak if you only hear horror stories looking on the net, its a bit biased!

Look at my post count and membership date - I joined after my 3rd flare I think it was and had had 5 years in remission from diagnosis to join up date! I'm in remission now but just like to come here and see how people are or if I can help or advise in anyway and its a great community, I've been helped so much by this when I've had questions or worries.

The first year is usually the toughest as thats when your trying to find the right meds etc and get used to having the illness ,what you can and can't do, eat, that sort of thing.

You CAN get better, it might take a little time but its possible that you can get into remission and maybe be among the lucky people who only have one or two flares in their lifetime. there was a post recently on remission and theres people who have had symptom-free periods lasting 20 years! You just don't hear about these people as much because, as I said earlier, they're off living happily, healthily and 'normally'.

Its not the end, I remember when I was first diagnosed thinking I'd always need to be near a toilet and would never be like my friends. Now I'm at uni, I made the cheerleading team first year (and to think just a couple of years before that I was told my arthritis would put me in a wheelchair) and am fitter and stronger than most people I know, I go out clubbing and drinking and so many things I once thought I'd never do, people have no idea I have Crohn's unless I tell them and even then they're like "eh? you don't seem like you have anything wrong with you" well thats true - there is nothing wrong with me but occasionally I get sick, when I do yes it sucks but I have great doctors and with the right treatment within weeks I'm back to being myself again.

Just keep fighting and (I know its hard) keep positive, it can be tough but you've found the best place here to help you through.

 

Yeah most people that post here are having issues at the time. Most will go in remission and disappear for a few years then come back. So you get the worst of it on here. Don't worry man, it is nothing you can't handle.

A few things:

The people on this forum tend to come here because we have severe cases, but many other people are not here precisely because they are able to live normal lives. The point is, don't take our examples as the only ones. There is hope for a normal life, but you will have to be a lot more conscious about what you eat.

Second, look into the SCD diet or Maker's Diet. People have had great success with these. They don't work for everyone, and they can be strict, BUT there are some who have been able to live even without medicine (I do not advocate this in any way. Stay on your medication!) because of their ability to adhere to these diets. It seems to help people in general to avoid gluten, sugar (sweeten with honey or stevia instead), and/or high lactose dairy (yogurt and aged cheeses seem to be fine). HOWEVER, everyone has a different diet that works for them. There is no set Crohn's diet so try and start simple e.g. chicken, broth, diluted juice, etc., and work your way up. Keeping a food diary helps to see what bothers you. Also, for now it would be best to avoid raw fruits and vegetables.

Probiotics: These help regulate your gut flora and ease symptoms. Popular ones recommended by GI's themselves are Align, VSL#3, and Culturelle. They can make a significant difference in how you're feeling. Many studies suggest that part of the reason why we feel so terrible is an imbalance in intestinal bacteria, and that probiotics can help fix this.

Light walking helps when you are up for it, don't overdo it physically, steroids will help you, but be prepared for some silly side effects like roid rage, moonface, and insatiable appetite/weight gain.

And something to remember would be that we all feel really depressed at times. I have had thoughts of ending my life, but we have to keep in mind that these symptoms, no matter how bad they get (I have almost died twice in the past year and a half) do get better. Life is not over so do not give up! It's really difficult at first, but just hang in there and feel free to ask questions/vent here as much as you like.

This place has been a life saver for me. If you have a question, ANY kind, someone will be able to answer it.

I am a big fan of SCD but I never recommend SCD to newly diagnosed people. Most people cannot follow it perfectly either my accident or will power, it is very difficult to perfect. To use SCD you have to know your body and your level of disease. New people are better off staying with meds and not playing with foods.

I have to agree with most people who have posted. When you are first diagnosed it is always the worst. I have lived with this disease my entire life. My mother had CD and then I was diagnosed when I was 23. I am almost 45 now. I can say that there are a lot more good years than bad. Once you find out what foods are ok and what medications work for you, things will calm down. You will get your life back. You will always have to be careful about what you eat and it will be a slightly different life, but it will still be a really good life. Trust those of us who have been there, done that.

Please understand I am not saying this to be mean, I am saying it because I want you to realize you still have some real strengths. We have been there buddy and we understand. It is absolutely a normal stage of grief and I want you to get some help. Please get some help.