I'm the one...

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B&K'smom
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 5/27/2009 9:15 AM (GMT -7)   
I'm the one at the grocery store you see buying the same thing everytime, knowing I can't eat what I want
 
I'm the one at the playground leaving in a hurry with my kids, for there is no bathroom in sight
 
I'm the one who causes the family to stop several times on a road trip, and you all know why
 
I'm the one who doesn't like to go out to eat, for nothing on the menu ever seems to fit my diet right
 
I'm the one who's loved ones don't understand what I am living with, but eager to learn and listen
 
I'm the one who has to remember to take medicine every day to keep the pains away
 
I'm the one that wishes I knew what a full remission felt like
 
I'm the one who leaves work hoping I can make that 45 min drive home without any accidents
 
I'm the one, the only one, in my family whose been Dx with this life long disease
 
I'm the one who doesn't know what the future holds and what complications may come next
 
I'm the one with the disease that not all Doctors understand and neither do I
 
I'm the one who seeks advice and information about what I'm living with
 
I'm the one that takes day by day not knowing what the next may bring
 
I'm the one with the autoimmune disease that you may have heard of
 
I'm the one who is thankful to be here, even if somedays, weeks, are hard...
 
I'm the one who knows I have to live with this disease many years to come, forever 
 
I'm the one who knows the challenges that I face, only make me stronger
 
I'm the one, among many who live life with Crohn's Disease.
 
turn
 
 
 
20 years old.
Symptoms since: 2005
Dx: 2007
Had one resection: Feb 09
Currently on Imuran.


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 5/27/2009 9:21 AM (GMT -7)   
Nice! Thanks for sharing.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/27/2009 7:10 PM (GMT -7)   
Indeed. I'm just sorry anyone has to relate to any of this.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


cindywchrones
Veteran Member


Date Joined Mar 2005
Total Posts : 1115
   Posted 5/27/2009 7:30 PM (GMT -7)   

Thank you for that post..and putting it into words I know that is how I feel.. When my son was given the same dx a couple years ago, I cried for several days..My husband was like he isn't dying.. Nobody wishs this suffering on somebody else.. I know others live with all kinds of things, but I have lived with this experience which has affected so many areas of my life..

Cindy

 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/27/2009 8:46 PM (GMT -7)   
I am moving this Monday and my 45 minute commute will become a 5 minute commute in September. Yay to no (or at least less!) bathroom stops along the way! Just got to get through a summer of 20 minute drives to bar classes, but that involves some car pooling. I'll be sure to drive the first few days so that I am "in control." For some weird reason it is so much easier to say "we have to stop here for a second" than it is to say "please stop here for a second."
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


B&K'smom
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 5/29/2009 1:20 PM (GMT -7)   
Y'all are welcome :) I just got to thinking about it, and decided to write it on here. Thought it might relate to a lot of people on here, even though that's not such a good.happy thing, but it's always nice to know your not the only one. :)

Fitzy- 5 mins? That will be really nice!! My co-workers always ask aren't you going to eat lunch, i just simply reply, you won't see me the rest of the day if i do, LOL.

Cindy- I worry a lot about my boys being Dx with CD some day, hopefully they won't. My oldest is 4 and my youngest is 4 months. But I would cry too, just to know what I have been through already and like you said not wishing this opon anyone else.
20 years old.
Symptoms since: 2005
Dx: 2007
Had one resection: Feb 09
Currently on Imuran.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/29/2009 1:46 PM (GMT -7)   
I think that is one reason why I am so hesitant to EVER become pregnant again. I would never want to pass on this disease.
But I've been reading a book called 'The Autoimmune Epidemic' that came out just last year that has all the information you could need on current research, and some of that is centered around detecting autoimmune diseases years before symptoms even begin to show in people. It's actually been working quite a bit of the time since researchers have access to a large military blood bank as well as the patients' entire medical histories to help develop this kind of testing.

Perhaps they could detect IBD in your sons before they ever started seeing symptoms and prevent it from happening at all :) I'd like to hope we're close to that.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 5/30/2009 5:26 AM (GMT -7)   
Love it
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


sickliz77
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/30/2009 7:58 AM (GMT -7)   
DEAR B&K'S MOM...IT NEEDED TO BE SAID, JUST AS YOU SAID IT. I KNOW IT HAD TO FEEL GOOD TO WRITE THAT. THERE'S POWER IN ACKNOWLEDGING THAT YOU DON'T HAVE ALL THE ANSWERS, BUT THAT YOU WILL KEEP ON KEEPIN ON, NO MATTER WHAT LIFE BRINGS...........P.S. DON'T YOU THINK OUR KIDS MAKE US STRONGER. WHEN I HAVE MY "WORST DAY EVER" MOMENTS I ALWAYS TRY TO FOCUS ON MY KIDS AND HOW MUCH THEY NEED ME. IT JUST HELPS.
Had my gallbladder out in 2001,chronic inflammatory bowel disease diagnosed(FINALLY) in August 2008, Psoriasis, Had severe eczema and asthma as a small child (now no) Psoriatic Arthritis, chronic sinusitis,allergies,  including one episode of anaphylactic shock while having one of my "bowel episodes" at my daughters pediatricians office. Current meds: Omeprazole 20mg in AM,Flonase nasal spray, Quit Bentyl since it was the only med I had taken 30 min. prior to anaphylactic shock. Quit Nexium because it is too expensive! My PCP refuses to treat me, my GI doc only prescribed Nexium, and then NEVER discussed a treatment plan with me after telling me I had chronic inflammatory bowel disease when he got the results from all of my biopsies and test results from a colonoscopy and upper endoscopy. I need a GREAT doctor!


sickliz77
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/30/2009 8:02 AM (GMT -7)   
ALSO, B&K'S MOM...I AM SORRY TO SEE THAT YOU ARE ONLY 20 YEARS OLD. I AM 31 AND CANNOT IMAGINE HAVING TO DEAL WITH THAT WHEN I WAS 20. GOD BLESS YOU DEAR. I WILL KEEP YOU IN MY PRAYERS. IT SEEMS THIS DISEASE JUST STRIKES YOUNGER AND YOUNGER ALL THE TIME. HOW SAD.
Had my gallbladder out in 2001,chronic inflammatory bowel disease diagnosed(FINALLY) in August 2008, Psoriasis, Had severe eczema and asthma as a small child (now no) Psoriatic Arthritis, chronic sinusitis,allergies,  including one episode of anaphylactic shock while having one of my "bowel episodes" at my daughters pediatricians office. Current meds: Omeprazole 20mg in AM,Flonase nasal spray, Quit Bentyl since it was the only med I had taken 30 min. prior to anaphylactic shock. Quit Nexium because it is too expensive! My PCP refuses to treat me, my GI doc only prescribed Nexium, and then NEVER discussed a treatment plan with me after telling me I had chronic inflammatory bowel disease when he got the results from all of my biopsies and test results from a colonoscopy and upper endoscopy. I need a GREAT doctor!


B&K'smom
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 6/2/2009 7:59 AM (GMT -7)   
LMills- I will have to check that book out, I haven't heard of it before, thanks

Sickliz- It did feel good to get to get it out :) And I completely agree that my kids make me stronger. I started out young having kids, if you can't tell, but I wouldn't take it back for the world, On my worse days, they seem to make it better. With my oldest I hadn't been Dx yet, but with my second, I had a horrible time. Bowel rupture, partial obstruction, etc... But the whole time I was struggling to survive, I had my boys on my mind. I would beg Kyle to make it for me(b/c they didn't know at one point if he would) and I promised him I wasn't going to give up. And when my oldest Billy would come to visit it made the worst time in my life, so much better just to see his smiling face :) And all the questions he had about what was going on, and when I would get to come home. They are just miracles :) Thanks for keeping my in ur prayers, I just keep telling myself, this has all happened for a reason, I may not understand completely why now, but one day I will. I know what I have already been through has made me learn not to take life for granted and that each day is not promised. And I'm thankful to know that, People say that all the time, but I've truely been close to not knowing if I was going to take my last breath.
20 years old.
Symptoms since: 2005
Dx: 2007
Had one resection: Feb 09
Currently on Imuran.


Acaverly
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/2/2009 9:08 AM (GMT -7)   
Thanks for posting that.

My daughter is 12 and was diagnosed when she was 11.

B&K'smom
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 6/2/2009 9:43 AM (GMT -7)   
Your welcome, it's nice to vent to people who understand, rather they are living with it or watching a loved one live with it. Wow, 11 years old? Just like sickliz said, it keeps stricking younger and younger. And I know as a mother you must have mixed feelings with ur daughter being Dx, but you will learn a lot from here and the most important thing is sticking by her side for the years to come, I know if I didn't have my mothers love and help, I would be lost, and I'm 20 married with 2 kids. But that goes back to the saying, when your sick, you want your momma :) lol and oh is that so true!!
20 years old.
Symptoms since: 2005
Dx: 2007
Had one resection: Feb 09
Currently on Imuran.

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