I am almost 27 years old, and was just diagnosed the end of January 2012.
I am the full time mommy of a very active 20 month old little boy, while at the same time a student and a full time phlebotomist at a hospital in my area.
Currently I have been experiencing alot of blood and mucous in my stool… yuck I cannot believe I am putting this online for all to read.
My son was born in February 2011 and all throughout my pregnancy I had blood in my stool, which actually started well before I got pregnant, but got worse with the pregnancy. I told my OBGYN about it and she said “Oh you are pregnant, you probably have a hemorrhoid” I tried to explain to her that this was not blood like with a hemorrhoid, but she didn’t seem to get it.
After I gave birth, I was pretty anemic, but when I was discharged from the hospital they didn’t really say anything about it. I had gone to a WIC appointment and they counseled me on how low my Hgb was, which was a high 9 at the time.
Throughout the next couple of months I had on and off blood in my stool, and began going to the bathroom more and more during the day. By Christmas 2011 I was in the bathroom more than I was out, and I was seeing more and more red, but it was the holidays, and I knew, if I went to the doctor I was going to be headed for a colonoscopy.. exactly what I did not want!
By the end of January, I could not take it anymore. I woke up one morning, so tired, it took everything to get myself out of bed… I went into work and had them run a behind the scenes CBC on me… it came back as pretty low, so I counseled my sister who is an RN and she said I needed a transfusion.
So I called my PCP and made an appointment for that afternoon, and yup, my sister guessed it… admitted for a transfusion of 2 units, plus a lovely drink for that evening to prepare for the dreaded colonoscopy waiting for me in the morning!
Since then, I have had small periods of remission, but alot of flaring.
My mother thinks this is a death sentence, but at the same time she thinks that it is somehow a misdiagnosis.
My one weakness is caffeine… I am tired all the time…
I start for at 4am one day, 530am the next, and then 2 days later 930am… I am bumped all around… so I have to have my caffeine. I try to alternate between 5hour energy, coffee, and red bull.
Is there anyone out there that can tolerate caffeine?
I don’t notice that the consumption of caffeine makes me see red, but it usually makes me end up in the bathroom, but not like diarrhea level bathroom-ing, just like once the morning that I drink it.
Does anyone have anything that helps give them more energy but doesn’t have the caffeine?
Where I’d like to be in 1 year:
Not in the red!
I’d like to be able to have a less stressful life, done with school, in a job where I am happy, and about to support myself and my son!
When I was discharged from the hospital last January I was on a tapering dose of Prednisone, and 2) 800mg Asacol 3x a day. Plus some Iron supplements
I had a flare in April and we added 50mg 6MP to the mix and doubled my iron supplement.
I am currently flaring again and am on another tapering dose of Prednisone starting 40mg this week and tapering down 5mg a week for 8 weeks, and have bumped the 6MP up to 75mg… I am going to get a metabolite level drawn in 4 weeks to see if my body is metabolizing the 6MP too well, and determine if I need to bump up to 100mg. So far I have tolerated the 6MP well, not neutropenia… Oh and Im still on my Asacol dose too.
written by Amber
submitted in the colitis venting area