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The more Crohn's stories I read, the more depressed I get
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JavaMamma27 posted:
I am still new to this disease. And the more I read, the more depressed I get. This is a horrible, nasty, unfair disease. Is there any winning situation? I go on Facebook, and the stories there are even more discouraging. I see lots of people on biologics- but they stop working after a relative short amount of time. My family seems to think that once I start mine, I'll be up and feeling great in a matter of days and my life will be happy ever after. I would LOVE that to be the case. Has that happened to anyone? I want to go back to the days where asthma was my biggest issue.....

***sigh***

Steph
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OyWithThePoodlesAlready responded:
Steph, I know its so frustrating. I do think that more people are doing well than you hear - I think the tendency is to write when we're feeling crappy or anxious. I am feeling overall great ATM (had a hint of a flare this AM but think it'll pass - fingers crossed), but I feel bad sharing that too much when I read how much others are going through. I have a friend w/ moderate - severe crohn's who has managed for 10 years pretty successfully with Imuran, and a friend of a friend is on remicade and does triathlons. Talk about inspiration so it happens, even if you don't hear about it

Try to hang in there, I know the uncertainty can drive me nuts
~Ali
 
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sheba_q replied to OyWithThePoodlesAlready's response:
I second that. I tend to lurk more than post, partly because what am I going to write - that I feel pretty good while most of the messages on here are from people feeling like crap. That can just make people feel even worse, 'cause why isn't it true for them...

You're in the early days and you're still trying to wrap your head around everything. I've had ulcerative colitis for 18 years now. If nothing else I've learned to take things one day at a time because tomorrow I may feel different than I did today, and I'm not going to know that until tomorrow.

Don't think that every day is going to be like the crappy day you just had. Once you settle into a treatment plan that works you'll feel so much better than you do now. You just have to have the patience to get there - instant gratification isn't going to happen.
 
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miserable_sob responded:
Steph I understand how much this no win situation sucks and how you feel it's not fair. I agree with you, it's anything but fair. The problem is that's life for you, as much as we want to believe it's fair, it will never be. Ever since day one this world has been divided into the "haves" and "have nots" This cute little emoticon sums up how I feel about the whole situation too
 
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larsstarscanary responded:
I don't know if you've tried Lee Swanson Signature Line Ultimate Probiotic Formula, but it has had me in remission from ulcerative colitis for over a year now.

WebMD, www.ccfa.org and my gastroenterologist all got me interested in probiotics, and I'd tried others, but the Lee Swanson type I mentioned above really changed my life--I had diarrhea 4 years, and this stuff stopped it like that. (I also take medication for the ulcerative colitis, but it couldn't stop the diarrhea, for some reason, but the probiotic did.)


It has worked on one person with crohn's that I know of and 3 others with u.c.

(When I was in college, there was a girl there who had crohn's, but somehow she was in remission for years. I wish I could tell you what she did to make it go away. Like me, she was too skinny back then.)
 
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jaimem92 replied to larsstarscanary's response:
JavaMamma...
I've had problems with the same thing for quite awhile. Sometimes I didn't know if it was better coming on this board or not, because it just seemed so depressing. But it is good to have others that understand what you're going through. I just got married, and sometimes I wonder if my husband knew what he was getting himself into.. haha. But.. everyday he reassures me that he loves me even if my bowels don't. I have been very successful on Remicade. Like i've said- I've been on it for 3 years and have had no major flareups since then. I mean I still have the occasional stomach pain or bout of diarrhea or constipation.. But, I would much rather deal with the side effects of Remicade and stuff than the alternative. It's been a life saver. I'm still able to run everyday for the most part and almost eat the things I like. I still have to be careful on certain days but I live a pretty normal life. I work as a Rad Tech in a hospital, am married, planning on having kids someday. All of the above


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