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buffymoon
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 6/22/2010 5:04 PM (GMT -7)   
Hello all, I joined this to gain info for my 29 year old daughter who was newly diagnosed with crohns disease in April. She has no internet connection right now. she comes here sometimes or to her sisters to get online. She was diagnosed with fistulating crohns. (not sure of correct terminology) smilewinkgrin and today she got her first infusion of Remicade; it went well for her,so far. I'm still questioning the whole diagnosis and rapid onset of treatment. sounds like it's a lifelong treatment, am I correct? she's on short term disability now, will have to return to work in 3-4 weeks, anyway, thanks for being here! LOL.... I also will check out the celiac disease forum as I have that, bad guts in this family I guess.... shocked Buffy

grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 6/22/2010 9:58 PM (GMT -7)   
Hello Buffymoon, and welcome! I also have fistulizing crohn's and Remicade is one of the best meds out there to heal the fistulas. How did she find out she had it? You were questioning the rapid onset...some people experience symptoms for months or even years before they are diagnosed and with others it comes on suddenly. If she suddenly started experiencing symptoms and was diagnosed right away, she is very lucky to be getting the help she needs. :-)

You can learn a lot from these forums so I hope you keep coming by!
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/22/2010 10:00 PM (GMT -7)   
welcome! i was diagnosed 22 years ago and wish this forum had been around that long...since i found it i've been so impressed with the empathy, understanding, support and info. you've found a great space! make sure your daughter gets on too! good luck with her treatments. i have had my 1st three doses of remicade. not noticing much so far but still keeping up hope!
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/23/2010 6:39 AM (GMT -7)   
Hi Buffymom and welcome to the best Crohns forum out there. I agree with the above that Remicade is the best med for fistulizing Crohns. Also since Crohns is a uncurable disease, medications should be taken at all times. If when you are feeling better the meds help to keep the disease under control. I once learned a very difficult lesson from not taking my meds, and wound up with emergency surgery. Your daughter does not want to go that route, believe me!

With Crohns disease it can attack without you even knowing it. It likes to continue to do its damage on a microscopic level until you eventually become totally obstructed and need surgery. But by taking your maintenance meds at all times, you can help to avoid that situation.

Please ask any and all questions you might have. One of our supportive members will surely have an answer for you. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

buffymoon
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 6/27/2010 7:03 PM (GMT -7)   
I am so glad to be here! thanks for the welcome... the onset seemed rapid to me; she had been having some pain issues off and on for awhile,pcp had been treating her for reflux, she must have some incredibly high pain threshold! diarrhea had been bothersome for awhile, but she thought it was 2/2 gallbladder removal 3 years ago and that it was a normal side effect, eeek!
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