Part I – The Beginning of My UC Story

What my symptoms were and the struggles I had getting health care

The Beginning: Symptoms

In the beginning, I started experiencing abdominal cramps and every time I ate, I felt intense pain and had to immediately rush to the bathroom. Visiting a doctor began looking like a good idea, but I was too busy.

For three days before Thanksgiving, I didn’t eat so I could continue to work. But not eating doesn’t make you the smartest cookie in the cookie jar and I was starting to feel the effects. I managed to drive to Vacaville, my hometown, the night before Thanksgiving.

The next day my family told me that it looked like I lost weight. I feel like most people are so used to seeing themselves a certain way. It can be hard to see the changes in your own body without other people pointing them out.

I had lost seven pounds and I never lose weight. To say I was shocked would be an understatement. The weight loss confirmed to me that there was definitely something wrong. I started eating again because I realized that not eating was not helping anything. 

Worsening Symptoms

But after Thanksgiving, for a two-week period, things got a lot worse and I was still loosing weight. My joints felt like they were on fire, my eyes hurt, I was nauseous, and I was having 15 to 20 bowel movements a day, with the worst occurring at night. 

I would go to sleep for a maximum of two hours and then every hour of the night I would have to rush to the bathroom. I used a whole cupboard of toilet paper! That’s expensive. Because of my lack of sleep, I developed a really bad head cold, so my nose felt like it was broken as well.

For those two weeks, the toilet bowl was also red from bleeding in my colon. My stomach cramps and spasms were so bad that my parents were beginning to think my colon had perforated. It was time to get help. But this started the most frustrating and confusing part of my story. Health Care.

The Beginning: The Health Care Fiasco

As an undergrad, I had gone to UCSC (Banana Slugs!!!). In the University of California systems, the school health insurance was required. Because I was a graduate student at a California State University, I assumed I was covered by the school’s insurance. But I was dead wrong. State schools do not offer health insurance.

I tried getting insurance and was sold a crappy policy that did not even apply in California. Being out of my mind with pain didn’t allow for me to be the very best judge of scammers. My dad took over after this fiasco since I was obviously an easy mark. Kaiser Permanente was chosen but because of the new Affordable Care Act, nothing was starting until January 1.

Paying Out of Pocket

Finally my family decided that we would just pay out of pocket at Sutter Regional, the place I used to go when I was under their insurance. 

• It was $100 per visit
• On my first appointment, I had to take blood and stool tests at $525
• The tests all came back negative but I had to pay another $100 for an appointment to learn that
• I saw a GI specialist a week later ($100 again)
• The whole process took 3 weeks

By the time I saw the GI specialist I had gotten over the worst of my symptoms on my own. But I was still not able to eat without going to the bathroom soon after. 

He asked really good questions, listened closely, and said it could be one of two things. I could have had an undetected virus that attacked my digestive tract and I was suffering from Post-IBS. Or it could be a more chronic condition like Crohn’s disease, ulcerative colitis, or colon cancer. 

The only way to diagnose me was to get a colonoscopy done. He recommended, because of my health care situation, waiting until I was covered by insurance, especially since I had been getting better. So I waited to get the ball rolling.

My story continues in Part II – UC Diagnosis and Adjustment

My Whole UC Story

You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:

• My UC Story: where and when my ulcerative colitis symptoms first started
• Part I – The Beginning of My UC Story: what my symptoms were and the struggles I had getting health care
• Part II – UC Diagnosis and Adjustment: how I was diagnosed and how I struggled to adjust to living with ulcerative colitis (including diet experiments, and getting frustrated with doctors not listening to me)
• Part III – UC and Severe Back Pain: my ongoing struggle with severe back pain + getting a new GI doctor that listened to me and who sent me to a  rheumatologist
• Part IV – Sacroiliitis Diagnosis and UC Remission: getting diagnosed with sacroiliitis, getting on Remicade, and finally going into remission (with both my UC and joint disease)
• Part V – The Second UC Flare: my slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
• Part VI – First Hospitalization: my first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema (swelling from fluid).
• Part VII – Being on Prednisone for My Second UC Flare Recovery: being on Prednisone for the first time and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
• Part VIII – Third UC Flare and Second ER Visit: my third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
• Part IX – Recovering From Two Consecutive Flares: being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
• UC Planning Realities: Trying to Write and Defend a Thesis: the difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
• Post UC Flare Routine: my post UC flare routine that helped me manage my physical and emotional symptoms
• Body Image and Mental Health with UC: Stop telling me I look great: the connection between body image and mental health and how my experience with ulcerative colitis has complicated my relationship with the two
• Making Travel Plans with UC: the difficulties in making travel plans with UC
• The Nightmare of Ulcerative Colitis: I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis
• Part X – Fourth UC Flare: My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
• Hanging Out in Limbo: waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds
• Part XI – How Losing My Colon is a Transformation and Not a Loss: I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
• You’ve Just Crossed Over into the Prednisone: Being on prednisone is a lot like being in the Twilight Zone. Things aren’t always what they seem, it can be hard to navigate and understand your surroundings, and often times you feel like you might never come back. Or the even scarier thought: that you might not ever want to come back.
• Recovery Reads: a list of some of my favorite books to read while recovering from UC flares, hospitalizations, and surgeries
• Pre-Surgery Jitters: my pre-surgery jitters in the days leading up to my j-pouch surgery on May 20, 2016, and how I distracted and pampered myself
• Part XII – J-Pouch Surgery: what my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
• J-Pouch Surgery Recovery: j-pouch surgery recovery is a full-time job with lots of road bumps along the way including bladder problems, dehydration, exhaustion, healing stitches and scars, pain and emotions, and adjusting to life with a stoma and ostomy bag
• Stoma Life: what my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like
• Part XIII – Pancreatitis: my struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
• Part XIV – Ileostomy Takedown Surgery: how my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications
• Part XV – Post Operative Ileus Complications: my painful and scary experience with post operative ileus complications left me very weak, under 100 pounds, malnourished, and very close to death’s door
• Surgery Recovery and Diet Problems: Physical and diet difficulties from post-surgery recovery and complications from pancreatitis, post-operative ileus, and pouchitis
• Everything is Shiny and New
• Hitting the Wall and The Privilege of Scars and Wrinkles
• Experiencing Loss and The Power and Comfort of Creativity
• Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years