Life with Crohns

So im fairly new here and im having a bit of a bad week emotionally!

My crohns which was undiagnosed for ages and last week i started prednisone (after unsuccessfull treatment with entocort)

For the first time in years i actually feel "well". I have the energy that a normal 25yr should have, ive no pain, everything is working like a dream with the prednison.

Ive started to realise though that crohns is with me for life; and its scaring the crap out of me to be honest.When i was diagnosed in April i was so relieved that they finally knew the cause of my woes and that i wasnt going mental like my previous doc thought.Now the reality is starting to sink in.

I am thankful that it is not cancer or anything like that but all the same ive really struglled to live any sort of a normal life the past year and Im already dreading tapering off the steroids because  they make me feel like me again. Im scared my significant other will eventually get fed up of living with me and crohns. How do you all cope? Is there life available off steroids?

 

Roxette,

I have had Crohn's for 30 yrs. Yes, there is life after pred. Some people do become pred dependant, which calls for eventual surgery. Others do not. I have had short periods where I had to remain on pred for longer than we wanted, but I've always been able to come off at some point. I have spend more of my 30yrs off pred than on it. Everyone is different though.

I have had 2 resections, and it looks like the 3rd is coming up quick. I have never achieved full remission. Many people ahev remissions lasting 20 yrs or more. I have a stricture that has been there for several years. It has now gotten too narrow, with too much inflammation.

You can live with this. Sometimes it feels impossible, like you can't bear another spasm; but you do. If you keep a good diet of things that don't hurt, and stick to it most of the time (most people cheat sometimes), that will be a huge help in cotrolling it. Some can almost completely keep CD under wraps by diet alone. With others diet is only a small part of control.

Start off by eliminating everything that causes a flare, and that will be a great headstart. You can do this, because you must.

     Roxette,

           This is the reaction we all have after realizing our illness will be with us for life. I've actually had docs play down the CD just so they won't upset me. A little late for that..

        I was origionally dxed with UC, so I figured if I got worse or failed to get remission, I always had surgery as a last resort & I could be rid of my illness. Then I was told I had CD roughly 1.5 years later Not a happy time in my life, worse because at that time, my roomate was going back to Maryland & I would soon be totally alone. Alone with this crap which was devestating my life at the time. I knew it was a life sentence. So now I had to go through the whole stages of grief thing again that I had just been through with the UC label.

      However, while I still have CD related problems, I don't have frequent flares anymore & I've been off steroids for over 13 years approx.

     BTW, I've had this most of my adult life & I'm now 46 years of age..

      Sincerely,

    Matthew

yeah diet change is one of the hardest things to do especially if your use to no restrictions,if you dont have anything that really bothers you then ur sweet i haf quite a few things that bother my crohns found a new one today sasuage rolls from bakery's,much more fatter than the pre frozen ones at the supermarket :( and fizzy drinks sadly

It is a very frightening thing, and I think something that many of us will never come to terms with completely. I think one of the most important things to remember to do is to scream and cry. Catharsis in a quiet moment when you're alone, in that form, really does help.
And don't stop doing things you love. Find time everyday to do something like read a really inspiring book or music that provokes thought.
Cheat sometimes with food too because, and I don't care what anyone else says, you HAVE to have comfort food in your life. Cheating every once in a while, while you find alternatives to make you feel just as good, I think is all right.

Sometimes I wish that I didn't have this disease, but then I think back on all of the good things it has given me that I might otherwise not have had.
My nihilistic, fatalistic view of the world has not become my dominant philosophy for example. I still believe in a chaotic universe, but I no longer fill that 'emo' stereotype and point out every singe thing I deem an injustice in the world.

I see the world and it's now a beautiful place; not one I want to force myself to leave.

I've also become closer to my family..something that would not have happened had there been no excuse for them to swoop in and help take care of me. I couldn't even touch my mother before, but now I'm able to at least let her get close enough to hold my hand when I am in the hospital.

Food definitely tastes a lot better now that I have had those horrible periods we call flares and I couldn't eat any of it. I still remember how good even ensure tasted after going through my last bad flare.

And then there is the ability to appreciate the things that most normal people not only take for granted but dread: Being able to wash dishes, do laundry, cook everyone else's dinner, etc. etc. Basically work...

It doesn't take much time to write out the bad things this disease has brought us. Many of us do it on here in less than half an hour and more than once. But the good things, those are innumerable I think. We may suffer horribly sometimes, but there are really wonderful rewards hidden beneath it.

I won't lie. I know you will have a hard time, and I know that I will too(I admit I have wanted to kill myself so many times, or simply give up and let the disease finish its job). But this really is a case where, if you don't allow it to kill you, it WILL make you stronger, and you will be able to get so much more out of life than you would have without it.

Hang in there. I know you'll be fine :)

I too was the same way
I KNEW i had crohns but my old doc said I did "not present" as a CD person
No tests nothing

I changed docs immediately had the scopes done
and I was given the news

I have to say even at 99% sure I knew it was CD I was still in denial for a bit

I learn new things each day from this forum and my CD...........

STAY with us
YES YES there is life and a light at the end of the tunnel.........LYN