- CASE FILE
Doctors believe that I have an autoimmune disorder that cannot be tested for, which has attacked my GI system for the past 11 years.
ABOUT THIS CASE FILE
I have been dealing with chronic illness for almost 11 years now, from 2008-2013 I had severe idiopathic chronic pancreatitis. Spent almost ½ of each year in the hospital for TPN and pain control. In 2013 I was the 6th patient to have a total pancreatectomy with auto islet cell transplant at UCLA. The auto islet cell transplant only partially took, which has left me now to be a brittle type 1 diabetic. After that I lost G.I. motility and was constantly constipated and kept being admitted to the hospital for blockages, colonic inertia, and colonic pseudo obstruction. Because of this I had an ileostomy in 2018 and now wear an ostomy bag. On May 24, 2019 I had a total colectomy.
I deal with a great amount of chronic pain in my abdomen. Some days are better than others. I used to be very active but now I get winded and dizzy very easily, even when I’m feeling “healthier”. My skin is very sensitive and I break out in hives for no apparent reason. I have hypothyroidism that was diagnosed 8 years ago. My hands also tend to get purple and cramp up when I’m exerting myself or its cold out, my primary doctor said it is Raynaud's disease.
I’ve seen a countless number of specialists over the past 10 years. For 9 years I was primarily seen at UCSF. In 2018 my care was transferred to Stanford, and that is where I am now followed by many teams. Both UCSF and Stanford believe that I have an autoimmune disease that they can’t test for. My doctor referred me to the rheumatology clinic at Stanford, but they said they won’t see me until I have a formal diagnosis.
This condition has basically hijacked my life. I have spent so much of the past 10 years in the hospital that it now has become my new normal. I call my hospitalizations “tune ups” because I have come to realize that my body can’t function normally for very long before I need to go back in for 2-4 weeks of inpatient care. Because of this I have missed many family events, holidays, and vacations. I have had a lot of serious complications. My drivers license was suspended for over a year because of hypoglycemic seizures. I now wear an insulin pump and and ostomy bag. My ileostomy is very overactive, producing over 3000ml of output every 24 hrs. Because of this I have to set alarms for every 2 hours during the night so I can go to the bathroom to empty it. If I sleep through an alarm my bag will burst, which ends up being unfortunate for both my fiancee and myself. I am constantly having to worry about taking care of myself in order for my body to semi function. All of this trauma and stress has taken a toll on my mental health as well.
I am getting married this fall and I am ready for a happy, healthy life. But in the meantime I have to worry about things that most brides don’t have to think about. For example, will my ostomy bag leak during the ceremony? How will I empty my bag every hour while in a big wedding dress? How will I pack all of my medication, insulin pump supplies, and ostomy supplies on my honeymoon? What if I end up in a hospital while I’m there? I feel like I can’t relax or fully enjoy this exciting time in my life.
I am seeking help from Chasing the Cure because I want to know what is this mysterious autoimmune disease I'm dealing with and what are the other complications or symptoms I might have in store for me. I want to fight back against this disease and gain control over my life again.