Posted 3/24/2008 11:47 PM (GMT -6)
My 18 yr old son was diagnosed with UC two and a half years ago. It has been a nigtmare. He had a bad reaction to Imuran immediately (acute pancreatitis). Remicaide put him in Coronary ICU with acute pericarditis. Therapeutic doses of Asacol are toxic for him as well and give him massive headaches. He has had short periods of stability but has lost all faith in medicine really and is understandably fearful. He is drinking chinese herbal teas and juicing. He is strick with his organic diet and eats according to his blood type to reduce inflammation. He is fearful of eating out after bad experiences and is too unstable to stray far from home for any length of time. He went back on pred only when he could no longer take the pain. He is on a probiotic, 30 mg of pred unable to wean, a low dose of Asacol and a hideous concoction of chinese herbal tea before each meal. He has lost weight, is anemic, in pain, resentful and angry, angry, angry,...sad, and very isolated. Help.
Posted 3/25/2008 8:09 AM (GMT -6)
Hi Mamasita - welcome to the board. You should start a new thread with your post so more people will see it. Maybe one of the mods can come around and help you out!!
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 

Posted 3/25/2008 8:25 AM (GMT -6)
I can relate, when I'm having a flare I don't tell anyone because it results in non-stop phone calls and people 'checking on me' God leave me the hell alone!
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort

Posted 3/25/2008 2:02 PM (GMT -6)
The people who know I have UC think they are experts in my life - "you need to reduce stress", "you should eat this or that"... I love when they are having Chicken & Speghetti or Chicken pot pies, or something like that - "you should be able to eat this because it has chicken in it....why cant you eat it?" - people are very uneducated about what we have.....they have absolutely no idea what we go through - from the food problems, social anxiety about the food, bathroom phobias, etc... UC and Chrons are very cruel diseases!
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety), Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)

Posted 3/25/2008 2:14 PM (GMT -6)
I can relate to that too, everybody thinks they know how to fix it and gives stupid advice or some half-crocked home remedy.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort

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