Newly Diagnosed with Crohns and Scared to Bits

[laydeefly]

One major flare and three flares later - most recently this Tuesday released from ICU Friday night at NYU. I decided to join the forum. This is harder than I thought - even with my tumblr blog, research, eating, and medications I managed to end up worse than when I came out regarding my disease. I am doing everything I can to not lose my colon. I have lurked on this forum since being diagnosed and now I want to join the conversation - if possible.

Here is my story:

I was diagnosed with Crohn’s disease in late November 2012. Definitely not feeling what’s happening but due to an amazing network of friends, fam, and close associates I decided to set this up after having my 3rd visit to the emergency room today for a flare up.

There is a severe lack of information, contradictory web whatevers, and heavily western med friendly stuff out there that I am not about. I really want this to serve as something where people can share and seek out info that comes about.

This is not publicity act. I really want to control this disease. If you wanna share a personal story or medical connection please hit me via Tumblr submit. We need to help each other in 2013.

If you told me that I would be dealing with this considering the way I eat, live and workout at close to 31 yrs. old I would have laughed in your face. :ywow::ywow::ywow::rosette1::soledance::heart::heart::heart:

 

[Jim (POPS)]

welcome to the fourm, you will get alot of support in this fourm. Try coming to the chatroom to get a jump start. There are alot of really good people in there for you to start finding friends and to ask any question you have. If you go to the room and there is no one around, keep coming back. MOST of the time there is some people in there around 8PM EST. Hope to see ya there.

 

[laydeefly]

Thanks Jim - I will starting tomorrow. Means alot to get my first reply. Awesome sauce.

Respect,
Mary
@laydeefly
wheremycrohniesat.tumblr.com

 

[rollinstone]

Hope u start feeling better soon

 

[afidz]

Hey and welcome!
I would love to hear more about you, what your going through and such. Like Jim said, this is a great place for information and support. I hope you find the comfort here that so many have. Are you still in the hospital now?

 

[Teacrumb]

I know from experience that hearing "You have Crohn's Disease" is one of the scariest things that will ever be said to a person. You'll get through this, though, I promise. Good luck and keep us updated. I wish you the best.

 

[laydeefly]

I decided to name my colon Beyonce. May she get right and become famous/fab and fit and unstoppable once fixed.

Just not so ehh when it comes to public speaking - the real Beyonce lacks in this. And doesn’t like perform all the time for no reasons. No singy "runs":ytongue: please.

 

[laydeefly]

I have been documenting Crohns stuff on my private FB group and my new tumblr where my Crohnie's at. I am doing my first CCFA group this week. Meeting with my GI Doctor about Remicade on Monday, getting acupuncture, and learning how to chill the eff out.

I really wanna get my energy back and be healthy again.

I used to do Crossfit, dance, spinning, and pilates. I wanna get back to all of that again - the ultimate stress relief.

I made a tumblrlog to encourage others - we shall see what happens. Check it out - wheremycrohniesat.tumblr.com

 

[afidz]

hahaha love it! Crohn's is VERY hard to talk about. The subject matter isn't really dinner conversation! What meds are you going to try to get everything under control? I have only been on Humira and Asacol, and I recently had a bad reaction to Asacol in November so I don't think I will be trying that one again anytime soon

 

[laydeefly]

I was on Liada, Pred, Metro, Cipro
I am on Lexapro and Clonapen for anxiety
And a host of natural stuff (strong probotics, DGL, glutamine powder)


Plus refuse to stop working out - 80% of serotoin starts production in the gut.

I refuse.

 

[afidz]

Good for you! someone started a thread about serotonin and Ibd a few days ago I believe I can't link it to here right now because I'm on my phone, but when I go on my computer tomorrow I can get you the link to it if you would like. It sounds like you have a really great attitude and you're not going to let this bring you down. Its very refreshing. An attitude like yours.can go a long way around here. I really appreciate it

 

[laydeefly]

I would appreciate it!

 

[afidz]

Here is the link to that thread, hope it helps!!
http://www.crohnsforum.com/showthread.php?t=46208

 

[GotRawFoods]

Hello, you seem pretty informed about diet and exercise. That is great. I see you have tried Acupuncture. That seems like a good idea. How was your experience with that? Chiropractic care seems to help me. Have you considered visiting a N.D.? Not all Naturopaths are a good, some just want to barrage you will supplements, without knowing where the issue lies, but there are some out there that will try and pin point exactly where the deficiency is coming from in your body that is causing the GI issues to occur. Let me know if you need more information. Thanks and good luck to you!

 

[723crossroads]

Hope all goes well for you and you do accomplish all those things you used to do. With your attitude, I believe you will! As a great friend once said, Fight like a girl!!!:heart: