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sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 12/30/2009 12:19 PM (GMT -7)   
hi all! I'm 22, was diagnosed with Ulcerative Colitis in feb 09, no sign of crohns. Had a colonoscopy this morning, results show both UC and Crohns in my colon, UC is left sided and i'm not exactly sure where the crohns was (I was still out of it) but from what I understood I have a fistula leading to my bladder. (what do they do for that?)

I'm absolutely overwhelmed. I could live with my UC, but adding crohn's to the mixture, I don't know. I just want to die. This is going to be a huge financial drain on us. Starting the new year I have a different insurance and it's not going to cover any of this. I don't know what to do. I've been trying to find a regular insurance plan, but because of my UC nobody will take me. I'm stressed... and now this... :(

My dr has put me on Pentasa (6 daily), immuran (100 mg), and a hydrocodon (?) enema. If none of this work then he wants me on remicade. I'll be seeing my dr again in 4 weeks.

How does one cope with this?
Diagnosed with UC in February 2009, has had an ongoing flare up since October 2008.


Medication: tapering off Prednisone


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/30/2009 1:00 PM (GMT -7)   
First off take a deep breathe!! This is not a death sentence. Once you find the right medication for you (which I think your doc is starting you off right), you will see better days. I have lived with disease for almost 35 years and you learn to adapt to it. I also recommend trying a low residue diet and see if that helps some too. Sending healing prayers your way.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Lizard99
Regular Member


Date Joined Apr 2006
Total Posts : 192
   Posted 12/30/2009 1:29 PM (GMT -7)   
sgirl,

First off I'm very sorry that you have this disease. You will find a ton of support on this forum. It is a very tough thing to deal with. You asked "how to cope?" well, I find that there is no other way to live. Either pick myself up or live miserably. So I try to stay as positive as I can. Sure I have horrible day where my attitude of it all just sucks! But then time passes and I learned that I just have to live the best I can, as hard as it can be. I think of all the other people out there who are suffering far worse than I am, or those that don't even have food. Always remember it can be worse. At first its hard (I've only been diagnosed about 4 years ago) and you will always be learning, but as time passes you just kind learn to live with it, and I just apologize when I'm being a complete jerk because of it!

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 12/30/2009 2:07 PM (GMT -7)   

sgirl,

First off..sorry to hear about the dx and your insurance problems.  The thing to remember though, like Nanners said, it isn't a death sentence.  I have had CD for 21 years now.  I have my good days and I have my bad days.  Right now I have horrible pain in my rear and I sit most of the day for work.  But I always remember that things could be worse. 

The thing to remember is there are a lot of people out there like you, and a bunch of us are here to support you.  It is ok to be stressed and worry about it..so go ahead and be stressed for a little bit.  You have to go through that process some times.  Next, remember that it can be managed and things will come together.  It seems like you are on top of things.  You have a doc that seems to be on top of your illness and will try to help you.

I hope you feel and get better soon and don't be afraid to come on here to vent.  Things will get better..don't worry.


36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 12/30/2009 3:40 PM (GMT -7)   
Hi sgirl. Sorry you're going through all this now. Just try to breathe through it - this is a disease that you just have to learn to adjust to, and accept, and all that of course comes with time. For now, just try to take it one day at a time. My husband was diagnosed with ulcerative proctitis for 4 years, before his diagnosis changed to Crohn's. Crohn's is not that much different from UC, except that with UC you have a surgical cure. Thankfully though, even if you do have both crohn's and UC, the treatment for both is the same. It would be much worse, if you had UC, and another disease for which the treatment could have a detrimental effect on the UC and vice versa. So, try to look on the bright side; at least this is an adversary you are somewhat familiar with already.

As others have said, it sounds like your doc is doing all the right things. I hope you'll feel better really soon. Try to face each day as it comes, and try not to think too much about all the what ifs. That's how you cope with this disease - easier said than done, I know. But do try to do that - take each day as it comes, focus on the now, and not about all the unknowns in the future.

In addition to following doctor's advice, also start taking some probiotics if you aren't already. Also, as Nanners said, stick to a low residue diet, to prevent the food from irritating the bowels. Keep yourself well hydrated. Avoid sugars and caffeine. Good health insurance is a must - that's the only thing I'd worry about - hopefully, you can get it sorted out to where you have adequate coverage. If you have energy, focus on that, and see what options you have. Some states have high risk pools that you may qualify for.

Hugs. Hang in there. It will get better, and you will find a new normal, and you will be happy again.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/30/2009 4:19 PM (GMT -7)   
All great advise! I'll just say sorry to hear you have this disease and I wish you you good health.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 12/31/2009 8:11 AM (GMT -7)   
thanks everyone for your encouraging words. I'm feeling better today with everything, still feeling overwhelmed though, which I guess is normal.
Diagnosed with UC in February 2009, has had an ongoing flare up since October 2008.


Medication: tapering off Prednisone


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/31/2009 7:28 PM (GMT -7)   
Just stay with us here and you will get answers support caring and lots of understanding..so sorry you hv to deal with this but as was said it is not a death sentence sp and we will help you all we can...lyn
                          
                                Co Mod for Crohns, Anxiety/Panic, Alzheimers
   Crohns..Pyoderma gangrenosum,..Anxiety / panic..Fibromyalgia,,Neuropathy...Deaf...Seizures
 
                        I DONT COMPLAIN...OTHERS ARE WORSE OFF THAN I AM                                   
                                                     .....LYN.......
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