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:
- Peanut butter
- White bread
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:
- 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