Wednesday, February 4, 2009

RETRO 11.30.2005

Hey guys, another update from meee! haha! I'm so proud of myself about being good about posting on Wednesdays. Now I just gotta get back into making videos and we're all set huh? A quick note about this next Retro entry. I refused Remicade back in 2005. I have never taken it in my life. It was recommended to me at one time because my doctor is very impatient and only wants to see quick results. He wouldn't hesitate to switch my medication. Every time there is a new drug he brings it up and wants me to try it even if I'm on remission. I don't want to be a test subject. If I had taken his advice, I would've gone from Asacol, to Colazal, to Remicade, SURGERY, and now there's a new one that they asked if I wanted to try. I forget what its called but it starts with an "L" and the dosage is only once daily. His reasoning is, "its better because you just have to take it once so you won't forget to take your pills". I'm not going to take a drug just because its more convenient for my lifestyle. What if one pill is more potent than the 9 pills that I already take? Please remember: this is MY body!

Just because a drug is new, it doesn't mean that its better. Besides, back then I didn't really have a choice. Without insurance I could barely afford anything so I put all my effort into the drugs I was already taking and the Specific Carbohydrate Diet. Luckily it works for me.

And on a personal note. I hate my doctor. He's a turd. I need to find a doctor that I'm comfortable with. Are there still doctors like that? I don't want another person that is quick to give me pills and send me away. I want someone who actually cares to see me get better.

Retro 11.30.2005
Ok… I did some research on a new medication that they might start me on. I don’t know… I don’t think I want to do it. With every new medicine that is tried on me, I just get progressively worse. I stopped my very first medication because my hair was falling out. That was a bad idea because a few months down the road, stopping my maintenance drugs and a bad diet landed me in the hospital. I switched doctors and was put on even more medication. At one point I was taking thirty pills a day! It was so awful. I felt terrible all the time. Now I’m only on one drug and my hair is falling out again!

The doctor wants to start me on monthly Remicade injections that will cost $4,000+ for each injection. The side effects include certain cancers, pneumonia, liver damage, tuberculosis….

The treatment is probably worse than the disease! I think I’ll take my chances going bald. I’ll stick to the diet I’ve been on for months now too, that seems to be working and the only treatment that I can trust.

Most of all, I have to stay positive, but its getting really hard to do so…


Anonymous said...

Fern, how long did it take for your symptoms with UC to start clearing up once you started the SCD? I know I should expect a drastic change overnight since I just started the diet last Friday, but I was just curious when the pain and bleeding starting subsiding for you.

fernpixel said...

well... for me, I never had drastic changes overnight. I saw results from week to week. Little things start changing like in the first couple of days I stopped passing gas. Even to this day I struggle with loose stools, but I only go once, maybe twice daily.

As far as the pain and bleeding. That will take a much longer time. It might be months depending on your condition. Patience is key young grasshopper ;)

I'm not the food police, but just some advice: might want to take it easy on certain veggies. I read your blog that you bought saurkraut and that's not supposed to be eaten early in the diet. Even if you're eating the right things... it could hurt you if you eat them too soon.

you can check out the notes on this website as a general guide on what you can and can't have and when to eat them. Its listed alphabetically

best of luck! :)

Anonymous said...

Thank you for letting me know about the sauerkraut! I didn't realize I wasn't supposed to eat that yet! I've read the book, but there's so much to remember, I knew I'd probably make a mistake somewhere, lol. Oh well, trial and error right? Thanks for the response!

Katie said...

My GI is such a turd as well. Im not taking any medication but I have decided to cut all dairy from my diet (my only diet modification). My doctor told me that Im ridiculous and that I should just take the pills and keep eating dairy. Hes also the doctor that couldnt wait for the anesthesia to kick in and started uncovering my backside during my colonoscopy. the really sweet anesthesiologist kept saying "give me 1 more minute, 1 more minute" because my iv had shifted and I wasnt getting the Propofol. The jerky GI was yanking the gown and I felt so naked and embarrassed. I haven't gone back to him since, but I dont have another doc so I dont know what I will do if I flare, go back to jerky or find another.

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