Patients Ulcerative colitis
What is it really like to live with Ulcerative Colitis?
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Hi Carenity Members,
I am hoping that the community here at Carenity with Ulcerative Colitis will use this forum to post what life is really like when living it with Ulcerative Colitis.
Please post your story about living with Ulcerative Colitis.
Include information that you feel would be important for a newly diagnosed person, family member, or caregiver to know.
The goal is that this discussion turns into a useful part of the forum where new users, current users, family members, and caregivers could come for helpful information regarding what life is like for those living with Ulcerative Colitis.
Through a community we are stronger.
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I'm new to this site and I've had ulcerative colitis since I was 13 years old. I am now 60. It was pretty debilitating when I first had it and I lost so much weight and looked "ghostly." Of course at that age kids are horrible and made fun of. As I aged it went into remission and I've taken the medication "azulfadine" most of my life to keep it that way. However, I got a rare disease of the liver called "primary sclarosing cholangitis," which is almost always caused by people that have had either ulcerative colitis or chrones disease. It is a disease of the bile ducts around the liver. Most people need a transplant within 5-15 years of diognosis but I've had this for 30+ years now. I do feel the progression of symptoms currently. I also have a history since the 20's of "bipolar 2" when you speak of how ulcerative colitis has effected your moods. Well, I guess I can say my life is effected by moods as well as these other horrible diseases. It is leveled currently but this past year has been difficult as for everyone I'm sure.
I wanted to share the PSC diognosis in case anyone ever has issues that appear to be "gallbladder" like symptoms. It is only shown in a "endoscope" type procedure and of course blood work. But doesn't always show in blood.
Thanks for letting me share here.
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