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Crohn's Disease
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Posted 10/20/2009 12:03 PM (GMT 0)

HI im new to this site just registered. i have had crohns since i was 10 btw im 18 now. nothing has really worked for me constantly in and out of the hospital and now i learn my disease spread to a risque spot. I start college in january and im hoping the remicade will work, last time it didnt. actually nothing has really worked and lately i have had no energy for quite awhile, literally ive just been sleeping all the time. it always hurts when i have a bm, it feels like my intestine is bout to pop out, and lately whenever i exert myself i have this persist pressure/ache on the left side of my chest plus horrible back pain. idk i feel lonely i suppose and would really like it if i could talk to other people with the disease i feel like im the only one who has it. ive never talked to anyone with crohns before.

 

thanks for reading. 

Posted 10/20/2009 12:09 PM (GMT 0)
You are not alone and many people have felt this way. I think at one point somewhere in our lives we all get depressed with this disease. The best thing to do is not let it take over. You may feel sick and week but never let it stop you from living.
I am curious what meds you have been on since you haven't had CD for that long and already Remicade isn't working. Also, always remember...if your doctor isn't helping, seek another one. There are many specialist in this world on CD. Search the boards here as there are many people that can help. I also find that www.ccfa.org is a big help in understanding the disease.
Feel better and let everyone here know how you are doing. Just remember, things will get better.
Posted 10/20/2009 12:13 PM (GMT 0)
good morning i am so glad you found us here.i dont think i have ever known a better community of ppl than u will find here....we totally get what is going on and we are here so you dont have to feel this way ,,,please know you can talk to us....post your questions issues and you will be embraced by the ppl here....here is to a good day for us all .....lyn

Post Edited By Moderator (Nanners) : 10/20/2009 7:06:09 AM (GMT-6)

Posted 10/20/2009 2:28 PM (GMT 0)
Hi Jackie. My daughter is only 9 and was diagnosed with Crohn's about six months ago, a week before her 9th birthday.  She has tummy aches off and on still, and mostly diarrhea with she has a BM.  Recently, her GI doc started her on Entecort. It is helping her tremendously. We saw a major improvement in BMs after only 3 days.  The point is this:  I have found that you must 1.) talk openly and freely to your doc, if that's not working, find a new one. 2.) do lots of research and talk to lots of people on this board to get ideas (don't assume what works for everyone will work for you, but use the ideas as things to research, talk to doc about, consider, etc.) and 3.) consider dietary changes. You didn't mention your diet.  We have found quickly that certain things will give my child a problem immediately no matter what med she is on, i.e. tomatoes, soda, McDonald's.  We avoid those things to avoid tummy aches. (Most of the stuff that bothers her is JUNK anyway so I have to admit that her diet is somewhat healthier now than before diagnosis.) Also, are you taking probiotics of any kind (capsules, powder, kefit, yogurt, kumbucha)? It is important to keep your gut colonized with healthy bacteria.

Hang in there.  Keep coming here. It helps. :-)

Posted 10/20/2009 6:25 PM (GMT 0)
Hi Jackie,
have you tried total enteral nutrition? My 12 year old daughter is on it now and it is working wonders. I understand not many try it, but if you have not, let me know and I can tell you what to do, according to what I'm reading and doing with her. Also, Writer might read your post and give you some advise. It's hard to follow, but not as hard as what you are going through now.... We went on it to avoid Remicade, and it is helping. (see my post). Gis in the US frequently dont mention. But there are many clinical trails to back it up, and you could know by the third week if it works for you.
Feel free to email me if you like, or ask here on the forum.
Posted 10/21/2009 1:20 AM (GMT 0)
Hi and welcome. You are not alone here ,,for sure.
Posted 10/21/2009 3:55 AM (GMT 0)
Welcome Jackie,
You will get lots of great support and advice here. Sorry u are having a difficult time with this nasty disease. Remember you are not alone. Take care and stay in touch
Posted 10/21/2009 2:48 PM (GMT 0)
You are definately not alone.  Check with your doctor and local hospitals to see if you can find a local Crohns support group.  The Crohns & Colitis Foundation may be able to help you find one also.  That has been my saving grace.  I can't tell you how excited I am every month to meet with people who are going through the same things that I am.  I learn so much and have made many new friends.  We have guest speakers come periodically and are able to ask lots of questions in a small setting.  It's really nice.  Besides that, keep checking in here, there are lots of people on this forum who can give you advice and support.  Again, you aren't alone!   Welcome.....
Posted 10/21/2009 3:51 PM (GMT 0)
Whats up Jackie? You have came to the right place. Hundreds of us here:) There is so much good info on this board, hope it helps you :)
Posted 10/21/2009 9:05 PM (GMT 0)
Hi Jackie,

Not to beat a dead horse, but have you tried the SCD (Specific Carbohydrate Diet)? There is a book on Amazon about it called "Breaking the Vicious Cycle." It has saved me from the knife on several occasions and induced a long meds-free remission for me from May 2005 through December 2007.

Best,
CH
Posted 10/21/2009 9:07 PM (GMT 0)
Most importantly, get a good GI. Get a woman. If she does not seem to care much about you, then move on.
Posted 10/22/2009 12:48 AM (GMT 0)
wow have I been missing something with having a guy GI?
Posted 10/22/2009 12:56 AM (GMT 0)
aocc - it's because the woman who started the thread has some "woman" issues with CD.
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