A Little bit about Me:
26 year old Financial Analyst. Diagnosed at age 24. Every medicine I have tried has seemed to be unsuccessful. Few options left- stem cell study, surgery, SCD. Started SCD diet last week and am just hoping this all works out
My GI Symptoms:
Last week it was 8-12 movements/day (2-3 times in the middle of the night). Blood. Movements looked like small crumbles or dust.
After starting SCD Diet + 40 mg/prednisone
4-6 movements/day. Very little blood if any. Some diarrhea. Movements are a little bit better but I wouldn’t say they are where I want them to be yet.
In 2008 after 4 years of living a typical college life, I found myself leaving my hometown for a my first job- overweight and with high cholesterol. To avoid going on medicine, I completely changed my diet and started working out regularly. By the end of the year I went from 200lbs to 175 lbs. I was proud of myself and loving my new life. I moved again for work (part of rotation program), and decided I would start training for a half marathon. Life was good, I was healthy, enjoyed my work and my friends and in May of 2010 completed the half marathon I had set out for.
Literally 7 days later,
I woke up in the middle of the night
with sharp sharp pains in my stomach.
I went to the bathroom. My movement felt weird but didn’t think to look in the bowl ignored and went to bed. Only to wake up a few more times. That pattern continued throughout the day and following weeks. I couldn’t put any food down without running to the restroom. I was finally able to see a GI doctor who thought it might be UC but needed to do a colonoscopy to be certain. He scheduled it on the day of my 24th birthday (what a gift).
He confirmed it was UC. He gave me prednisone, lialda, and rowassa. Within 6 weeks, I felt like I was in remission, only to get another flair up in September. By then I had moved to Chicago. I was able to get a doctor at University of Chicago Gastroenterology center (great center and doctors). We added 6mp, stopped the prednisone and tried rowasaa. That worked on and off again for a few months, until I had a horrible flair up in May that lasted until September. Started Remicade. That worked for a month and then worked on and off again like the other medicine but never put me in Remission.
That brings me to today. My doctor, who I really like working with and trust, said I have two options left. A stem cell study or surgery. I am meeting with a surgeon in a few weeks to learn more, but I really don’t want go that route. I know people can live an amazing life afterwards, but I am not sure if I am ready to make that jump yet.
The stem cell study sounds interesting (http://www.athersys.com/Home/ProductCandidates/MultiStemforInflammatoryandImmuneConditions/MultiStemforInflammatoryBowelDisease/tabid/105/Default.aspx) in case you are interested in reading about it. It is only in phase 2, so not all the side effects are known yet.
I haven’t made up my mind on what I want to do yet, but I just started the SCD diet last week. I think it is working, but I am also on 40mg of Pred.
I don’t know where I am really going with all of this, but I am thankful for the site. This disease just sucks. I am single in my mid 20’s, all I want to do is enjoy life but I feel like I have already wasted two years being trapped in my apartment like a jail cell. Thinking of excuses for not being able to meet friends is mentally draining and depressing.
I am moving again in a month to start my MBA, I REALLLLY need the SCD to provide some relief otherwise, I don’t even want to imagine what school will be like. I am hoping for the best, not only for me but also for all of us who suffer with this disease. Hopefully we all reach remission sooner rather later.
Thanks for listening to me vent and best of luck to all!!
P.S- If any of you have had experience with the multistem drug, please let me know, I am curious to hear your thoughts.
Where I’d Like to be in 1 year:
written by Rohun
submitted in the colitis venting area