Life with Crohns

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Regular Member

Date Joined Aug 2008
Total Posts : 63
   Posted 9/23/2008 8:57 AM (GMT -7)   
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?

Regular Member

Date Joined Aug 2008
Total Posts : 24
   Posted 9/23/2008 9:30 AM (GMT -7)   
Hi Roxette,
I am still learning, I was diagnosed in Feb (for the second time) and am struggling with pain.  How long were you on the entocort before you switched?  Pred was working for me and they decided to put me on entocort.  I'm still waiting for it to kick in.  I'm not sure how long it is supposed to take.  The pain is back and I want pred back.  How sick is that?  LOL
Mom to 5 little ones.  First dx of crohn's in 2003 (while pg with #4), then it was changed to IBS.  2/08 I was rediagnosed with crohn's. Most of my crohn's is int he sigmoid colon and decending colon.  I'm responding to crohn's treatment, so they say it isn't my Endo.  It is very hormonally charged though.
I'm currently taking Pentasa 4 2X daily 
3mg Entocort
weaning off small dosage of Pred.

Regular Member

Date Joined Aug 2008
Total Posts : 320
   Posted 9/23/2008 11:38 AM (GMT -7)   

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.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
When I am weak, then am I strong

Regular Member

Date Joined Sep 2007
Total Posts : 246
   Posted 9/23/2008 5:51 PM (GMT -7)   
I had trouble when i first got dx,the idea of having a "illness" freaked me out i didnt want to have a label,it takes a while but you get use to the idea,taking pills everyday annoyed me too,but i got use to that too,i try to look on the bright side of things like my list of things i have had done to me,and this site helps alot too,read some of the funny threads ,makes coping with this disease easier.Don't you get sick of ppl thinking ur not sick coz u dont look ill that annoys me most.
dx 17 aug 2007
21 yrs old
23 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 9/23/2008 6:14 PM (GMT -7)   




           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 shakehead shocked 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..





Regular Member

Date Joined Aug 2008
Total Posts : 63
   Posted 9/24/2008 1:20 AM (GMT -7)   
thanks for all your input guys. Reading other peoples experiences is such a big help.
I think it is all just so new and daunting that i feel abit lost at times.
My aim is to become one of the people who go into remission and remain unaffected by crohns for most of their life; maybe im kidding myself but i suppose positive thinking should be the first thing i need to sort :) I must confess i havent changed my diet in anyway and its something i probably should look at. My doc doesnt seem to think i need to go on a special diet but im willing to try one if it offers relief. I have to say though ive never noticed any food in particular making my crohns worse or better. I do eat a fairly balance diet though and dont eat too much crap.
I guess im rambling now so thanks once again for everyones support and advice.

Regular Member

Date Joined Sep 2007
Total Posts : 246
   Posted 9/24/2008 3:26 AM (GMT -7)   
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
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa

Regular Member

Date Joined Feb 2008
Total Posts : 88
   Posted 9/24/2008 5:07 AM (GMT -7)   
Hi Roxette,

I've been where you are now and it is scarey, i still get scared 10 years on, it's a very natural reaction. I was on pred for about 3 years, gradually tapering off then flaring again. I eventually got off it completely and haven't been on it since, im now only taking mesalazine. Since having the disease ive done a biology degree, met and married my husband, bought a house, held down a high responsibilty job and am currently 16 weeks pregnant!! So there is definately life after prednisolone!

If i could give any advise for someone at the start of this journey it would be the following:

-look after yourself, nap when you need to, turn down social events if you're ill, don't try to be super woman
-look at your diet, i think this is really difficult to do when on pred as it masks your reactions to food so initially i'd say cut down on processed and fatty foods, limit sugar and consider cutting out alcohol and definately no smoking
-don't be hard on yourself, again the not being super woman part-if there's certain things you miss out on or can't achieve, that's ok, you can only do your best
-always take your medication even if you're feeling great
-get as much support around you as you can, be open with those closest to you, surround yourself with good, understanding people-you'll realise who your friends are and they'll be worth their weight in gold!
27 years old, diagnosed 1998
mercaptopurine, prednisolone, azathiaprine, actonol
currently on pentasa, calcium and folic acid

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 9/24/2008 5:49 AM (GMT -7)   
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 :)
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 9/24/2008 6:45 AM (GMT -7)   
Yes its a shock to find out you have something there is no cure for. And you feel cheated. I was just like you , glad to have a name for what was wrong after so many test that showed nothing, I had doubts about my own thoughts. I was sick of all the medical bull. I have come to terms with all this because I know there are always people with more troubles than I. I have seen children deal with war wounds and losses far worse than anything imaginable. The bottom line is, there is no normal life,,only life. We deal with what we are given ,,,,,,or we dont. I choose to enjoy each minute that I can. Tomorrow is not a given, we have only what is now. Find something good in each day you have.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 9/25/2008 4:07 PM (GMT -7)   
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
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
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Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
     Listen To Your Heart,Look Inside Yourself,Understand You

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