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UC completely changed me

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Posted 9/4/2013 7:20 PM (GMT 0)
You can not just drop off prednisone. You have to taper slowly, no wonder you are feeling so bad. Also, I wanted to say that a heating pad on my left side does help me with the pain. And gary is right.....lemonade is good. Next time they "forget" to call in your script, call the dr.'s emergency line and get that fixed. Bad things can happen if you stop pred. suddenly. Feel better
Posted 9/4/2013 7:28 PM (GMT 0)
Gary, I tried very hard to live a normal life. I went back to college and ended up flaring up. I fell so far behind because of how ill I was that I ended up dropping the course. I didn't give up there. I'd always feel a little optimistic. I am a very driving person. I'd keep working and saving my money so I could go to school to only end up flaring up again. I read that surgery doesn't always fix the problem. People still deal with pain and illness after. Believe me, if I could just keep moving forward I would. It's just easier said than done. Although, I think you are right to some degree. I think getting disabilty is my best bet now. I'll take computer science, and teach myself web design.

Would you walk into the cancer wing in a hospital and tell everyone they are giving up to easily when they are all barely capable of functioning. I know cancer isn't colitis, but the point is that. There is a reality we have to face, and no amount of optimism can change that. Like that part in batman where bane breaks batman's body, because he can't break his mind. Batman's mind was strong, but that only goes so far.

Thanks
Posted 9/4/2013 7:31 PM (GMT 0)
It sounds to me as if you've been DRASTICALLY under-treated for your UC. There are many, many medication options other than prednisone and it's WRONG that you were never given anything else, except that one time.
Posted 9/4/2013 7:34 PM (GMT 0)
Nex,

I did have to delete your one message but I am  very happy you continued to talk with the members and that you are feeling better today.

We have a forum for A & P as well as Depression.  Chronic illnesses and mental health issues often go together. 

I have a hubby with a 36 year history of Crohn's and I have Stage IV Colon Cancer so I can empathize with your low points, your  wondering how you are going to keep going, but I have faith that you will make it through this crisis. I cannot say I completely understand how you feel as each person's problems are unique to them but I am one of your cheering squad and want only the best for you.

Take care.

Gentle Hugs,

Kitt 

 

Posted 9/4/2013 7:35 PM (GMT 0)
ya, what fruitfirl says -

and screw that surgery sheet!

if you can get disability that would enable you to go to school in order to get a job that is less physically taxing on your body, that would be awesome -

hang on there nex nuthor :-)

Post Edited (soystud) : 9/4/2013 2:11:49 PM (GMT-6)

Posted 9/4/2013 10:18 PM (GMT 0)
I read that surgery doesn't always fix the problem. People still deal with pain and illness after.

They really don't.

There are issues, sure there are issues with surgery. But go to the Ostomy board and read up there how everyone says surgery changed their life for the better. I had a colectomy six months ago and even I am forced to admit I can eat what I like, don't have the fevers of death anymore, and am not curled up on the floor with pain. My life is still crap but that's because I've always been depressed. If you have mental issues, those issues will still be with you after surgery. But you won't be 1% as ill as you sound now.
Posted 9/5/2013 12:37 AM (GMT 0)
Yeah, I'll consider surgery in the future. I want to try a few things first. I talked to the doctor today, and he said he will get me on aish. That is a huge relief. In going to change my diet, and educate myself a lot more about this disease. Give it some good effort before I it the surgery route.

I just met with this doctor today, and he agreed I should get on disabilty. I feel like a huge amount of weight it off my shoulders. I was very nervous, because I dealt with a lot of not do understand doctors. I guess there is a little hope after.

Thanks for all your comments. If anyone is in my situation, get disabilty. There is no reason you should struggle for any type of pride/self worth. I wish I did something sooner.

As far as depression goes, it has always been something I have struggled with, also, even before I had my first flare up. The disease has pushed me far over the edge. At this point all I can do is look forward.

Take care all
Posted 9/5/2013 2:40 AM (GMT 0)
You're in Alberta eh Nex....you should apply for CPP disability, as long as you've paid enough into it, you're entitled to it, and it's better than AISH. You should check with welfare about affordable housing too.

Best of luck to you!
Posted 9/5/2013 2:35 PM (GMT 0)
Thanks pb4, I will look into that. That is the first I heard of it. I may have a chance. I started working when I was twelve, and became ill when I was twenty-one, so maybe I'll qualify.

As far as housing goes, I think the subsidize if the rent is too high. I mean, if you are going to be on disability, you might as well live in the est places :P jk.. Well, at least affordable, and somewhat decent weather. Let's face it, you will have to walk a lot, unless you buy a beater. I'll probably try to find something in decent shape for cheap. We'll see.

Yeah, I live in Alberta. Are you from here?

Once I am astablished, I am going to take some online courses. I don't know if I'll have to go to school for all of computer science. I know that you can be self taught, and still get a job, just because a lot of big companies are looking for problem solvers.
Posted 9/6/2013 5:20 PM (GMT 0)
Nex - Your tone sounds miles different in those last two posts, almost like you're a different person. Just wanted to say I think you're right to give other things before surgery a try first. I hope something pans out for you; best of luck.

I've always struggled with depression, too :-/ It's absolutely s...t, I sometimes think I'd rather deal with UC or Crohn's than the mind f... that is depression. Anyway, you seem to be on a good path for feeling better, both physically and mentally.
Posted 9/6/2013 5:47 PM (GMT 0)
Yes Nex, I'm in/from AB as well...you can go down to the Harry Hays building (Calgary, if that's where you live by chance) and they can check and see if you've paid enough into CPP in order to receive CPP disability...I think they supply the forms for you and forms for your doc to fill out...they tend to deny people the first go around but many found that re-applying along with a written letter (preferably from a GI) the second time around generally gets approval (each case is different of course).

There is low cost housing you can apply for and if you let them know you have a medical condition that limits you from working/making enough money then they may be able to help you for sure...check with Calgary housing authority/welfare (assuming you're in Calgary that is).

Good luck with everything and I'm glad you're sounding better about life.
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