Just feeling defeated right now...

Hi All. I was diagnosed with UC 20 years ago. My symptoms worsened until I had j-pouch surgery in '00. For the last 10 years, I've been battling multiple fistulae, abscesses, infections, and plenty of pain. I've had close to 2 dozen surgeries in the last 3 years, and finally had to get an ileostomy placed in March of this year. The ostomy's working great, but the fistulae have shown no change.

I know all the platitudes; that the sun will come up tomorrow, that we're only given what we can handle, yada yada yada. I know that I can't give up, or lose hope, and I try hard to be grateful for what I do have. I just need to talk to somebody who knows what it feels like. My heart is breaking because I'm so exhausted and tired of feeling terrible. I can't even remember when I last had a day without pain. I feel defeated.

Thank you, Will. Did you go thru a "grieving period" or feel depressed when you lost your sports? I'm a hard-driving, A-type personality who always derived my identity from how hard I could work, and how much I could accomplish. Now, the flare-ups and infections and surgeries have made it impossible to commit to things, or when I do, I often cancel.

You are a strong individual, Will Larson. Did you have a guru to help you find your way? It's very enlightened to channel that energy into other things. Maybe that's what I'm starting today. I have spent the last few months hunkering down in a foxhole, hoping that something would change if I waited out the blitz...

This is true. I knew not of kryptonite until I was in my 30s ;) Thanks, Will

Please forgive the gap in my story. I typed on multiple posts today. I was rediagnosed with penetrating Crohn's in '03 when my fistulae issues began. My fistulae stem from the couple of inches of rectum that I have left after my j-pouch resection and terminate to various places between my anus and vagina. I've had 7 total, 4 are blind, but have not closed externally and 3 are still active and have setons.

What meds have you tried? Sorry that you've had a rough go.

Just try to keep your head up and stay as positive as you can, I know it's hard.

Hello all I was diagnosed with severe crohns disease with colitus in oct of 1988 after the loss of a child born still born. I have had one surgery six years ago i lost two ft small and 4 inches large wich was part of my elium. I have a b 12 defficiancy because of it. I am just at a major point to were i am about to give up on it all just suffer. Dr had me on Hydrocodones and I moved new dr took me off i take tylonal but no help at all. Some one please tell me what you can take for pain with this painful disease dr dont want to give me nothing and i just cant hardly bare the pain. You know the kind of pain that makes your mouth water and feel nausious so bad my back hurts and spasms a have so many bm on chlosterium for it slows it down but nothing ever stops it. Fixen to go through a battery of test have gerd really bad food gets stuck cant go into my stomach painful to. And our favorite colon scope in Jan. They saw some abnormallities in my colon wich is more than likely scare tissue been told that several times. Its like every dr i go to has to redo all these test what to prove the other dr wrong if you have crohns disease you usually know it and your body better than a dr.
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I to have a great personality always said would never ever let this disease beat me or get me down i am on disability now loved working loved being around people the one person who has to make every one laugh no one ever knows when im in cronic pain i dont complain except to my sisters lol Here lately i just wish there was a magic pill I could take to make all the pain and symtoms away. I take the Humira pen twice a month dr says i shouldnt be having no symtoms while on it. But i am bad ones. Thank you for listening to me whine

I've lived with Crohn's for over 18 years, and after the bowel resection to remove my ileum, cecium and a foot of bowel, I felt better. I had a second child. I was doing fine until about 4 years later, when I developed joint pain. I always though the arthritis was not related, but now know that it is just part of this auto-immune disease. The arthritis got so bad, I had both knees replaced. With me, the complications have been worse than the CD... arthritis, fistulas, and now a stricture that is blocking me up. It has made me a bit of a recluse. I don't socialize much because I'm in pain quite a bit, or my GI symptoms are bad and I don't like to use other's bathrooms. But the worse part is, I'm not the same girl my husband married 22 years ago. Everyday, my goal is to just try to make it through, take care of my family and hurt maybe a little less than the day before. It is what it is.