Ulcerative Colitis

In March of 2012 I was diagnosed with Ulcerative Colitis (UC), an auto immune inflammatory disease that affects the large intestine, or colon.  I was familiar with the disease, since it seems to run in my family.  My mother, 2 aunts, and we think my maternal grandfather all suffer(ed) from this debilitating disease.  There is no cure for UC, though many people can achieve "remission" for varying periods of time.  Some people believe in healing the colon through diet, while others believe it can only be achieved with medication.  Unfortunately for me, neither seemed to work.  A lot of people think that gut bacteria may play a role, as well as stress levels.  But no one really knows for sure - my theory is that it's actually several different diseases currently grouped together based on their symptoms.

I was diagnosed while pregnant with my first child, after the onset of severe pain and blood coming from places that it shouldn't, way too often.  After she was born I improved a bit, had another very rough patch where I took some steroids to get better, and then seemed to be heading slowly toward remission.  Unfortunately I got very sick again in late Fall 2013... and found out I was pregnant again.  Clearly hormones affect my UC.  I remained very sick throughout my 2nd pregnancy despite the heavy use of steroids, and even spent a week in the hospital.  After my 2nd child was born we were hopeful that my hormones would level out and my UC would back off, but although we tried many different state-of-the-art treatments and added intense dietary restrictions, I remained quite sick.

In June of 2015 I woke up one morning with intense pain, fatigue, nausea and fevers... so we went to the emergency room.  3 days later my large intestine was removed, and I have technically been "cured" of UC now that I have no colon.  If you have no colon, you can't have ulcerative colitis... though I think I will always consider myself to have this disease after the way it has impacted my life.

I've written at length about my recent experience in the hospital, my surgery, and my recovery:

Part 1

Part 2

Part 3

Part 4

I now (Summer 2015) have an ileostomy that has given me back my freedom (I am no longer chained to the toilet!), and plan to have more surgeries in 6 months to a year to "reverse" my ileostomy with a new "J pouch", or in other words, the doctors will go in and connect my small intestine directly to my back end so that I can use the toilet like a normal person again.  Fingers crossed that will all work out!

I have also written quite a few blog posts about my attempt at the SCD diet, as well as some attempts at various treatments like Remicade and Entyvio.  I don't know how to include search results here, but if you're interested in finding those posts try out the search bar or look for posts tagged with "SCD" or "Ulcerative Colitis".  I hope that reading about some of my experiences can prove helpful to other folks experiencing similar struggles.