Part II – UC Diagnosis and Adjustment


How I was diagnosed and how I struggled to adjust to living with ulcerative colitis

When I was able, I left the comfort of my parent’s home and went back to living on my own. Kaiser Permanente really put me on a fast track. More tests were done that were left out previously because of cost. And they also scheduled me to see a GI specialist right away.

Within two weeks I got a colonoscopy and upper GI tract endoscopy done and was officially given a UC diagnosis in January of 2014. I was put on LIALDA and sent home with the instructions that six months later I would get another colonoscopy to see how much I had progressed.

Life Difficulties After Getting a UC Diagnosis

Living on my own with a UC diagnosis was hard. Luckily, my responsibilities at school and work were small. I had finished all my graduate classes and had entered my thesis units, meaning I just had to write. No classes. My part-time job had been a temporary one, so I did not leave the museum in a lurch.

I still tried to work but I was sent home a lot because I would often “crash” while doing any kind of activity. While working, running errands, doing chores, or cooking I would be fine for a little while. But then I would start feeling horrible with:

  • Achy joints and joint pain
  • Ice cold thighs and back that required a scalding hot shower for me to get warm again
  • Lose of all color in my face
  • Fumbling, lack of coordination, and confusion
  • Difficulty speaking
  • Feeling short-tempered and frustrated

Starting the SCD Diet

I had a very difficult time eating and the amount of food I could eat was very limited and included:

  • Apples
  • Peanut butter
  • White bread
  • Rice
  • Eggs
  • Avocados
  • Honey
  • Broth

My attempts to add more food failed miserably. I was at my wit’s end so about two weeks after I was diagnosed, I decided to try the SCD diet.

The beginning of the diet was really hard. Smells induced intense cravings and I had some cruel dreams. My dream self would eat food seductively in front of me, like a Carl’s Junior commercial. I hated her and wanted to kill her but I was not sure of the consequences of offing my dream self so I let her be.

After two weeks the cravings disappeared and I was able to add food successfully by following the different stages of the diet. By the end of March, the frequency of my crashes began to shrink but I still experienced them and I was also still having some painful digestive issues.

GI Doctor Frustration

I was keeping a food journal that tracked my progress and I brought my problems to the attention of my GI doctor but she shut me down. She said I was experiencing irritable bowel syndrome and that my colitis was in remission. I felt pretty frustrated by this. I know my body and I know my symptoms and I felt like the doctor did not listen to me at all.

Blood tests were ordered that eventually showed I still had significant inflammation and was still in an ulcerative colitis flare. But by the time the results came in I had already moved back to Vacaville and was making an appointment with a new GI doctor.

I had many reasons for moving. I was no longer taking classes at SSU and I was still struggling with getting myself well. My parents thought it would help me to have some support by living with them.

The owner of the place I was renting had also decided she wanted to sell the house and gave me until May 15 to get out. Rather than stressing out and trying to find housing within a very short period, I immediately began preparing to move back to my hometown.

My story continues in Part III – UC and Severe Back Pain

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:

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