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Ulcerative Colitis
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Posted 3/7/2010 3:35 AM (GMT 0)
I greatly appreciate both (suebear/notsosicklygirl) of your thoughts, but everywhere you look you see people who are now diagnosed with either Chrones or Colitis. America's diets are worse than ever and I truly believe a lot of this was brought on myself through eating garbage as a kid and a ton of processed foods as a young adult. I am now 32 and have found a love for juicing along with exercising (which I have always done) and I just think my body wasn't running properly because I didn't feed it the proper foods for a very long time. Take that along with a whole lot of stress from a family business and there you have a recipe for disaster :)

Im definitely gonna talk with my doctor later this month before I make any decisions, but my hope is to stay away from all medicines. I have become very uncomfortable with the whole health care industry and government. They are supposed to look out for us, but yet we still have tons of ingredients that are clearly bad for us in all of our foods. And why...MONEY! How long did it take to finally get rid of Trans fats? How long will it take to rid all food of high fructose corn syrup? Apartame and on and on. I like my doctor who is regarded as one of the best in the country (out of Chicago), but I cannot help but think is there a bigger problem with funding money and this is the way to do it? Cigarettes???? Why in the world do we live in the greatest country in the world where we are allowed to sell products that are proven to slowly kill us? MONEY.

I don;t want to turn this into politics, but please understand why I am skeptical. I read others had come off and were unsuccessful, but I don't know if they kept the same diet I intend on continuing. Green foods are by far the best foods anyone could eat with our disease. I truly believe I can cure myself with proper nutrition and a less stress environment. I am worried and I will explore all options, but mother in law told me to take charge of my own health and not rely solely on doctors. Most doctors don't even care to try and understand natural healing. It's all about medicine. And you are dead on when you say that Remicade is a "bandaid". The key for me is to find the solution through natural healing if possible.

I don't want to be 50 years old taking another medicine because remicade caused damage to other organs while protecting my intestine. That may sound ignorant to those of you who are sick because im sure if I got sick again I would regret my decision, but I just feel this is right. I know my doctor will NOT approve, but I want to make sure he will take me back because it was hard enough to get with him in the first place.

I will pray for those of you who are sick because I know what that is like and I'll never forget being in Disney World where I couldn't make it to the bathroom in the hotel. Nothing more embarrassing than that. But that doesnt top the sick feeling and not having the strength of getting out of bed or even feeling the need to sleep on the bathroom floor. I feel I have experienced the worst of colitis, but I won't let it control my life either. I lived an ignorant lifestyle for the longest time, but I am more educated than ever. Knowledge is power! And remember...doctors are wrong a lot of the time, but i doubt we will ever see anything that shows how many mistakes doctors make every year. I have had 4 different GI doctors before I got healthy...it's a big chance I am taking, but I just believe I will live a longer life because of it.

I appreciate your thoughts...truly!
Posted 3/7/2010 4:14 PM (GMT 0)
I wish you the best and I completely understand wanting to be off drugs and the political side of things. I would love to be free of all the medication but every time I try to decrease my meds, even by one pill, I notice flare symptoms. I eat very healthy, a lot of organic, I cook a lot, I've tried the SCD Diet, I don't eat a lot of fats, sugars or processed foods... Last time I started flaring, I was in very healthy condition, eating right and doing cardio workouts daily. I don't think living "healthy" is enough to keep this disease under control. It wasn't for me. I work with a woman who has been in remission for 5 years, she thought she was cured. A few weeks ago, she started having symptoms. She has a very mild case and has never been as bad as you describe yourself in the past and she is able to control it somewhat with rectal meds. I've been the way you were, barely making it to the bathroom, scared to go out... Long remission doesn't mean you're better and flares seem to get harder and harder to control. I would be appreciative of a long remission but I wouldn't start thinking the disease is gone. That's just my opinion. Surgery is the only way to eliminate the disease. Maybe you should see how you do without medicine but also look into surgical options just in case. You could be med free forever without a colon! Please keep us updated. Wishing you a long remission and healthy future!
Posted 3/7/2010 4:22 PM (GMT 0)
Thanks for that response. It is an eye opener to me to hear that you seem to be doing exactly what I am doing too. Eating well and exercising. That single post will definitely make me think twice. My appointment is at the end of the month so we will see.

That's why I love these forums. You get to hear from real people and not just doctors. I like to hear real life experiences from people who have lived through it. I greatly appreciate the time you have taken. You may have opened my eyes...we will see ;)

Thanks,
Shawn
Posted 3/7/2010 4:51 PM (GMT 0)
I too wish you well, Shawn. I can tell you that my friends couldn't believe when I was dx'd with UC. I was very health conscious, and seriously, I don't remember the last time I ate fast food. People still come to me for advice on healthy eating. I incorporate greens into at least two meals a day, and eat several small meals a day. I workout on a daily basis. I use Remi to control my symptoms. My last colonoscopy in August showed that my colon was clear of ulcers and that I was healed. I remain on Remi for maintenance reasons, although I'm looking to reduce back down to oral meds; although it's getting the courage up to do so. I feel so well on Remi because I can live a normal life and I still have the energy to keep up my busy lifestyle, job, and workout. Everytime I think about the possibility of going back to being so sick, it makes me stay on Remi. I've talked with my doc about it, and he says it's my decision. Good luck with your decision, and maybe we'll hear from Debbie -- I'd love to know how she is doing! ;-)
Posted 3/7/2010 6:21 PM (GMT 0)
Lonie, I'm right where you are. My last two colonoscopies have been entirely normal. But after suffering through a five year long flare from Hades, I'm too scared to go off Remi. I'm continuing it as a maintenance medication for as long as I can take it.
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