I am always aware of my UC, especially when eating out or around the holidays/parties and there is soo much I can't eat or I am afraid to eat. But, with my rectal inflammation, I am able to have enough time to always make it to a restroom even though I am usually red and sweaty on the way and about
to scream in pain.
Being in a long flare can really wear down a person. I think the anti-anxiety medication I take helps me stay more calm about
everything I'm going through. Also, I find comfort in knowing that Lomotil can help me in a D emergency (although it doesn't always work, it does usually).
I have made lifestyle changes that don't bother me anymore. I found the food sensitivity test especially helpful in prevent D, although at first, it was very hard to quit eating so many foods. It has helped so much so it was worth it. I avoid all restaurants that have made me sick in the past. I read ALL the ingredients when I am grocery shopping. Sometimes I cook a meal for my family that I can't eat and I eat a sandwich. It doesn't bother me much anymore. When going on vacation, I am super careful of what I eat for days before I go. I pack enemas and other emergency items. That's life now, plain and simple. There have been important events I missed due to a flare-up and I really hate it... but I have still been able to do a lot.
For me the hardest part of this has been the thought/fear of surgery and frustration with meds not working and even questions about
my diagnosis and even questioning my doctors. But I can't waste time and stress worrying about
it all, I am doing what I can and sticking with my doctor's instructions and blowing off my steam here on this forum. If you are feeling very hopeless about
having UC, you should talk with your doctor.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds:
Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm