My name is Blair and am 20 years old. I’m from the US and was diagnosed with UC four years ago in 2008. I love playing sports, specifically soccer and lacrosse! I love singing, playing my guitar and the piano. I attend a university for linguistics. Learning new languages is a passion of mine; I speak Spanish and French very well, and am still learning Russian, German and Italian.
Currently I have constant and frequent diarrhea and am anemic. Occasionally I’ll have stomach pain.
Blair’s Colitis Story:
In 2008, when I was 16, I was diagnosed with Crohn’s Disease and Primary Sclerosing Colangitis. I switched doctors about two months later and he changed the diagnosis from Crohn’s to UC. Since before I was even diagnosed I have had horrible stomach pain everyday that only recently subsided. I would get spells where I would have a fever, be freezing, shivering nonstop, and eventually throw up. My labs aren’t too bad. They were way worse when I was first diagnosed, then were completely normal, and then all of a sudden I got this flare. Right now my labs just show inflammation and anemia. It wasn’t until about seven months months ago that I started having blood in my stool and was having diarrhea everyday uncontrollably. I have tried medicine after medicine, have had allergic reactions or the medicine just hasn’t worked. Since I’ve been on a flare-up for seven months and on Prednisone for that long, my doctor thinks it’s time for the next step: infusions. He doesn’t want me on Prednisone any longer due to long-term consequences. I am also on Apriso and Azathioprine. I had an allergic reaction to Pentasa which is the same type of medicine as Apriso, so I’m thinking the reason I’m not getting any better is because I’m taking Apriso. Before I agree to these infusions I am finally starting a strict diet, going to stop Apriso and see if that helps.
I would like to know what treatments others have used.
What’s the longest anyone has been on Prednisone?
Is there any other option after the steroids besides infusions and surgery?
Does anyone have any insight on infusions?
I don’t know much about biologics except that they are expensive and have a lot of potential consequences such as Hepatitis and Cancer. I really don’t want to do these infusions. I’m willing to try anything which is why I’m on board with the change in diet. How long are flare-ups usually? Is my doctor right to be worried or could this last a year and then get better? It’s my first flare. Has anyone had luck with Probiotics? I know everyone is different, but what are some experiences with non-medicinal treatment? My family is helping me do research and are completely supportive in every way. They will help create meals I can eat, help pay for insurance and bills and do more research than I do. What we are most concerned about is stopping the pills and starting the infusions. If it was the best option I would consider it, I just feel like switching to that after only seven months is premature. Any help/feedback/advice would be greatly appreciated!
Where I’d like to be in 1 year:
In a year I would love to be symptom-free, taking medication, and on a healthy diet. I would like to be doing blood tests and seeing my doctor every three months instead of every month. I would love to either be promoted in my current job or have a job with an airline. I would love to be traveling and just enjoying life!
Colitis Medications I’m Using/Used:
Azathioprine: Works great! I have had no problem with side effects, and my labs look great and I fell well when I’m on it.
Prednisone: Worked well, allows me to go throughout the day without worrying about going to the bathroom every 20 minutes. However I have had several side effects such as weight gain, acne..
Endocort: Didn’t work for me, no side effects.
Pentasa: Had an allergic reaction of bloody diarrhea.
Apriso: Doesn’t do much for me, could possibly be making me worse and causing diarrhea.
written by Blair
submitted in the colitis venting area