Wednesday, September 17, 2008

RETRO 10.26.2004

Hey everyone! Thanks to everyone who left a comment in my last post. I saw some great suggestions from Tim and Yas2be so I'm already planning on what I'm going to say about those :) Please feel free to leave more comments/suggestions on videos. yay!

The videos will come eventually. Just keep watching for it... but at the very least I'll be updating my blog more frequently.

And now its RETRO time!

Ulcerative Colitis is a debilitating disease. What is the doctor's attitude towards it? Here you go:

Take your medication and deal with it. Its lifelong.

Hm... sorry that answer is not good enough for me. Today is another bad day. I spent most of the night uncomfortable and constipated. When I finally went to the bathroom I could not sleep.

I really wish I could clean my room but that requires a lot of bending down. The pain today is awful and I don't want to crumple my abdomen. Even sitting in a chair for a while is painful. I am dying to go outside for a walk to stretch my legs at least.

5 comments:

Timothy said...

Hi again, I see you are quite frustrated - as you should be. I never got much pity either when I was under the care of a doctor. Don't have health insurance anymore - it is SO expensive living in NYC. Hope things change like soon, health care etc. I had to get Pred from my sister in Cali "Illegally" Have you been on Immunomodulators or Biologic therapies? I have not been on either of these and the Aminosalicylates don't seem to do so well for my chemistry. Prednisone has been the one that's put me back together when necessary. I am no "doctor" though after 3 years of research and listening to "my body" I feel like I could be - concerning IBD anyway. It sounds like to me you are not healed inside enough to cross over to the colazal alone? When were you on steroid last, how long and at what increments? How did you tweak down (at what increments) If you don't want to answer I will understand, I feel I may have some knowledge to help. If you prefer we could communicate via E- mail it might be easier or maybe someone can gain from this feedback.

I will write more later

Tim - Razornyc@Gmail.com

Razor = I am a hairdresser...

Hope your feeling ok - I know how bad those cramps can be...

You are strong...

fernpixel said...

Hi Tim,

Thanks for your replies... um... I hope you realize when I label things as "RETRO" entries, they are things I wrote 4 years ago (I always place the date of when I originally wrote those things).

I'm just writing these out for you guys so you can see how bad things were for me in the beginning. Because I want to show that I started out the same as everyone else.

I'm actually in remission now. Hardly any symptoms. I am on Colazal alone and have been on the SCD diet for more than two years. Just wanted to clear that up.

Its very nice of you to be concerned... but you're replying to old issues of mine. :) but thank you

Timothy said...

I feel like an idiot... I'm glad you're doing well. The diet is great but I feel like I'm loosing so much weight. Better weight than feeling awful.

fernpixel said...

No worries Tim :) its an honest mistake hehe.

Its great that the diet is working out for you!! I wouldn't worry about the weight. I think you'll eventually gain it back once your symptoms clear up a bit more. I think its mostly because during a flare you're going to the bathroom more than you're able to keep food inside. So just keep at it. I believe in your confidence to get better. yay!!

Rory said...

I'm loosing TONS of weight and have been for maybe... 3 years!!!!! I'm not on any medications, food ristrictions or anything! It's just having colitis that's making me practically anorexic! Does anybody have weight gain suggestions????????

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