My name is Nicole, and I have Crohn's Disease

I was officially diagnosed with Crohn's when I was 17. My symptoms were very strange-- although I didn't have the usual stomach issues, my upper lip swelled up...for about 7 months. I should add this was during my senior year of high school and it was awlful. No one could figure out what it was. Finally, after months of running around CHOP, UPenn and the other well-known Philadelphia hospitals, the doctors informed me I was having a very rare reaction symptomatic of Crohn's disease. They put me on LOTS of meds, approximately 17 pills/day. They injected my lip and the swelling went down almost immediately (which made me hugely annoyed that I hadn't been able to figure out the diagnosis sooner), and within about 6 months the doctor slowly weened me off the meds, and then stopped completely, and I was symptom-free for almost 9 years. Then, this past winter I started to have lots of stomach issues which I attributed to a stomach virus and personal life related stress. But I ended up in the hospital for about a week, lost about 25 pounds (which made me the skinniest girl of pretty much all of my friends which was a serious first!!), and this time the doctors said I needed a much stronger medicine, which they would NOT be weening me off of any time soon. I've been on Imuran/azathioprine for about 4-5 months and it's been doing wonders for me-- except for a serious hair loss problem. I used to have this thick, really beautiful long hair and now it is terribly thin and just keeps on falling out. My shower drain is constantly clogged and I find myself shedding all of the time. I don't want to change medicines because this is a side effect related to my vanity and not my health, but it's driving me crazy!!! Does anyone out there know if the hair loss will stop soon or if there's something I can do to make it grow back or what?? Please help!

welcome to the forum.

Ive heard of others who had hair loss, I think it does get better after time, but some others gave up on aza and tried different drugs. If the hair loss effects you too much then i'd have a word witht the docs to see what else they can give you.

Vitamine B7 or H also called Biotine might help you without having to stop your meds.

Thank you!! I just started Biotin two weeks ago so hopefully that will help a little!

Hi Nichole and welcome. In case you haven't found it, we have an Imuran support forum that may be of use to you as well. I hope to continue to see you around. Take care and all my best to you