I have posted in the forum before, but simply asking about Uceris. Today i'd like to share my story and see if anyone has a similar path with any recommendations.
I had a really bad case of strep throat in 2006. Since I was only 19, I went to my pediatrician and got an antibiotic. a day after i started taking it, I had bloody diarrhea and terrible stomach pain. Since i was laying on the couch, doubled over in pain, my dad took me to the ER. I'm not 100% sure what they did there...but they made it stop.
fast forward to a few months later, the bleeding started happening again, even though I wasn't on any medication. I went to the ER because I was crying of stomach pain again, they gave me an IV and some muscle relaxers (doesn't even make sense) and sent me in for a Barium CT scan. The scan showed inflammation, so the next day they had me go to a Gastro for a colonoscopy. The scope showed that I had mild inflammation and they basically told me to take a probiotic and some pepto when i felt bad.
I dealt with this until 2009 when I couldn't deal anymore. I came home from college after graduation, and saw a gastro here. Another colonoscopy showed inflammation, but the doctor told me just to take Acidophilus and watch what i eat.
The blood starting coming pretty much everyday, non-stop D, and muscus. I eventually stopped having solid bowel movements. I went to another doctor at the University of Illinois at Chicago Center for Digestive Diseases. He did a Colonscopy and Endoscopy. Diagnosed me with Ulcerative Proctitis and put me on Asacold HD. It helped for a few months, but didn't "cure" it. He also gave me Canasa suppositories and told me nothing except those EVER go up there--not a problem.
I eventually lost my insurance, and by the time i got it back there was a 9 month wait list to see him. This is the end of 2011 now. Pretty much worse than I had ever been, due to no medication at all. I also was not taking care of myself and drank a lot of alcohol. Being 22 was probably the worst thing I could have ever done to my rectum! I finally got around to finding a Gastro in my area that my neighbor recommended, and I have been with her ever since.
The only issue I had was that it took her an entire year (until Friday) to do a scope. she was going off of reports from 2010. The reports showed severe rectal inflammation. Since i've been with my current doctor, I've been on Asacol HD (three 800mg pills twice a day) Uceris (one a day) Imuran (100mg) Canasa, and an 8 month cycle of 20mg of Pred. I begged her to take me off Pred. When I would take it, i didn't have D, but i didn't have any BMs at all. so we'd fluctuate between 10mg, 15mg and 20mg...never being able to get a good flow.
My scope last week showed severe ulcers and inflammation, internal hemorrhoids and a nodule. The biopsy results came back saying that i show chronic proctitis, and my nodule is just granulated tissue. At first my doctor wanted to bump me up to 150mg of Imuran, but my metabolic blood test showed 5100/5700, so bumping me up would put my liver into failure. my last month's test showed that my metabolic rate actually lowered, so that's why it was okay. Now, she called, today, and said stay at 100mg and then called in a special compound suppository that i will use once a day...and we'll go from there.
we have been talking about biologics--I'm favoring Humira. I know that it's a tough decision because it's such a commitment, but i'm wondering why my doctor hasn't just put me on it, since nothing else works. If it "100% works" like she says it does, with side effects less than liver damage...why wouldn't she just prescribe it?
Does anyone have any thoughts/experiences/insight? I'm only 26 years old, and I just want my life back.
I had a really bad case of strep throat in 2006. Since I was only 19, I went to my pediatrician and got an antibiotic. a day after i started taking it, I had bloody diarrhea and terrible stomach pain. Since i was laying on the couch, doubled over in pain, my dad took me to the ER. I'm not 100% sure what they did there...but they made it stop.
fast forward to a few months later, the bleeding started happening again, even though I wasn't on any medication. I went to the ER because I was crying of stomach pain again, they gave me an IV and some muscle relaxers (doesn't even make sense) and sent me in for a Barium CT scan. The scan showed inflammation, so the next day they had me go to a Gastro for a colonoscopy. The scope showed that I had mild inflammation and they basically told me to take a probiotic and some pepto when i felt bad.
I dealt with this until 2009 when I couldn't deal anymore. I came home from college after graduation, and saw a gastro here. Another colonoscopy showed inflammation, but the doctor told me just to take Acidophilus and watch what i eat.
The blood starting coming pretty much everyday, non-stop D, and muscus. I eventually stopped having solid bowel movements. I went to another doctor at the University of Illinois at Chicago Center for Digestive Diseases. He did a Colonscopy and Endoscopy. Diagnosed me with Ulcerative Proctitis and put me on Asacold HD. It helped for a few months, but didn't "cure" it. He also gave me Canasa suppositories and told me nothing except those EVER go up there--not a problem.
I eventually lost my insurance, and by the time i got it back there was a 9 month wait list to see him. This is the end of 2011 now. Pretty much worse than I had ever been, due to no medication at all. I also was not taking care of myself and drank a lot of alcohol. Being 22 was probably the worst thing I could have ever done to my rectum! I finally got around to finding a Gastro in my area that my neighbor recommended, and I have been with her ever since.
The only issue I had was that it took her an entire year (until Friday) to do a scope. she was going off of reports from 2010. The reports showed severe rectal inflammation. Since i've been with my current doctor, I've been on Asacol HD (three 800mg pills twice a day) Uceris (one a day) Imuran (100mg) Canasa, and an 8 month cycle of 20mg of Pred. I begged her to take me off Pred. When I would take it, i didn't have D, but i didn't have any BMs at all. so we'd fluctuate between 10mg, 15mg and 20mg...never being able to get a good flow.
My scope last week showed severe ulcers and inflammation, internal hemorrhoids and a nodule. The biopsy results came back saying that i show chronic proctitis, and my nodule is just granulated tissue. At first my doctor wanted to bump me up to 150mg of Imuran, but my metabolic blood test showed 5100/5700, so bumping me up would put my liver into failure. my last month's test showed that my metabolic rate actually lowered, so that's why it was okay. Now, she called, today, and said stay at 100mg and then called in a special compound suppository that i will use once a day...and we'll go from there.
we have been talking about biologics--I'm favoring Humira. I know that it's a tough decision because it's such a commitment, but i'm wondering why my doctor hasn't just put me on it, since nothing else works. If it "100% works" like she says it does, with side effects less than liver damage...why wouldn't she just prescribe it?
Does anyone have any thoughts/experiences/insight? I'm only 26 years old, and I just want my life back.
