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*~jackie~
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/20/2009 5:03 AM (GMT -7)   
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. 

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/20/2009 5:09 AM (GMT -7)   
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.
Crohn's Disease since '88
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/20/2009 5:13 AM (GMT -7)   
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)


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 10/20/2009 7:28 AM (GMT -7)   
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. :-)

  • Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/20/2009 11:25 AM (GMT -7)   
    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.
    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    Sniper
    Veteran Member


    Date Joined Feb 2004
    Total Posts : 6518
       Posted 10/20/2009 6:20 PM (GMT -7)   
    Hi and welcome. You are not alone here ,,for sure.
    If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


    andorable
    Veteran Member


    Date Joined Jun 2005
    Total Posts : 981
       Posted 10/20/2009 8:55 PM (GMT -7)   
    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

    ISF13+
    Regular Member


    Date Joined Jun 2009
    Total Posts : 202
       Posted 10/21/2009 7:48 AM (GMT -7)   
    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..... :-)
    Crohn's Disease. 
    Diagnosed 13+ years ago. 
    Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
    Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Calcium, Acidophilus & Potassium
    Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl, Vancomycin & Entocort
    "LIFE IS NOT HOW YOU SURVIVE THE STORM, BUT HOW YOU DANCE IN THE RAIN...."


    aoccc
    Regular Member


    Date Joined Feb 2005
    Total Posts : 455
       Posted 10/21/2009 8:51 AM (GMT -7)   
    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 :)
    SCD since 01, remission since 01, occasional random junk food breaks :)
    No meds ever.


    Carnival Huckster
    Regular Member


    Date Joined Oct 2009
    Total Posts : 159
       Posted 10/21/2009 2:05 PM (GMT -7)   
    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
    34 Year Old Male
    Crohn's Disease for 12 Years
    Current Medications: 9mg entocort (budesonide)
    100% SCD for past 90 days (on and off for 10 years)
    4,000 mg MSM for 30 days
    No surgeries
     


    NostraHistoria
    Regular Member


    Date Joined Nov 2008
    Total Posts : 351
       Posted 10/21/2009 2:07 PM (GMT -7)   
    Most importantly, get a good GI. Get a woman. If she does not seem to care much about you, then move on.
    27m - Dx January 2005: UC/Crohn's
    Entocort 9 mg, Asacol 4 x 3, Flagyl 500mg x 3


    aoccc
    Regular Member


    Date Joined Feb 2005
    Total Posts : 455
       Posted 10/21/2009 5:48 PM (GMT -7)   
    wow have I been missing something with having a guy GI?
    SCD since 01, remission since 01, occasional random junk food breaks :)
    No meds ever.


    Former58D
    Regular Member


    Date Joined May 2009
    Total Posts : 173
       Posted 10/21/2009 5:56 PM (GMT -7)   
    aocc - it's because the woman who started the thread has some "woman" issues with CD.
    "What can't be changed must be endured" - unknown

    DX with distal Crohn's colitis Oct 2007, predominantly in rectum
    Colozal (750mg): 3 pills 3xdaily
    Cortifoam - 1 nightly
    6MP - currently at 100mg and waiting for response......

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