7+ year undocumented flare, diagnosed in ER March 8, 2014

[Harpuia]

Hello. My name is David. I was diagnosed with Crohn's Disease at an ER in Las Vegas on March 2014 (with severe anemia). You can say this has been a pretty traumatic thing for me and so far I have been on Prednisone 40mg for several months. I'm preparing to go back to work in 18 days and could use some advice. Life has been pretty random here the last few months and only the last few days have things finally started calming down between myself and my family. My family has researched tirelessly to get me a diet and I've went from 115 to 150+ pounds in a few months. Now I could use some advice as I prepare myself for work in 18 days.

They will put me on Remicade 100mg in a few days.

You could say my world has been falling apart the last month or so. My family is trying to keep me healthy and I will be on a strong organic diet that has given me many believe a miraculous recovery thus far. Lost a friend. Very much taking things one day at a time. Very nervous about going back to work in 18 days because I've never had to use public restrooms often and now... well... heh.

Very nervous that I am probably going to lose everything to get myself treated within the next year or so but I am hoping not. So, any advice?

 

[Tuff]

Hello David and welcome. It's great that your family has been so supportive. If you don't have insurance, there is a program called Remistart. I don't live in the USA so I can't give you any info. Hopefully somebody will come along that can. There is a Remicade forum in the treatment section. I just started on it, and it's been working wonders for me. :ghug:

 

[David]

Welcome to the community. I'm sorry to hear about your diagnosis and understand your anxiety. Chronic disease like Crohn's can certainly turn your world upside down.

My biggest piece of advice would be to educate yourself about all facets of Crohn's disease so that you can advocate for yourself. And we're to help you with that process.

All my best to you.

 

[Hope345]

I hope you find what helps put you into remission. After 13 treatments of Remicade, with some relief, we learned that Remicade works better with Imuran added. This comes at a slight risk, but looking back, I do regret that it was not used with the Remicade from the beginning. (just an idea since you are just starting out. But please look at the risks)

After using the Remicade and other meds for our daughter a couple of years, we have now turned to a naturalpath, which I highly recommend at some point. It is my understanding that some doctors are moving towards the building up of the immune system to fight the inflammation: use of probiotics, anti inflammatory diet, lots of good vitamins/minerals/herbs. But along with this is a antibiotic treatment which is in the process of being patented. It is called the anti-M.A.P. treatment. worth looking into, especially for Crohns Disease. All of this would be after the Remicade treatments, which brings the immune system down and may stop the Crohns that way.

I wish there was one single treatment that worked for everybody, but at this time, there is not and often it can take a few trials to find the one that works for you.

take care and let us know if you have any questions.
Julie

 

[Harpuia]

Right now I'm just hoping the strict diet I'm on plus Remicade is enough. I got another month and a half before going back to work and test out the theory that my job might make me stronger.

I can see why the early days suck so bad though.

 

[krika]

Hello and welcome.
Sorry to hear about the crohns, if you havent yet you should get all your vitamins checked and the calsium in your body. Maybe you need suppliments. Vitamin deficiancy isnt any fun and easy to threat. The best I can come up with when it comes to advice, take things as they come, listen to your body, dont pressure yourself too hard and dont be hard on yourself best of luck