The Nightmare of Ulcerative Colitis

I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis

When I was small, my mom tucked me into bed as a nightly ritual. I had to choose one of my favorite stuffed animals, hug it close, and listen as she stroked my hair, describing an adventure that I would go on in my dreams.

As she wove her tales I waited in anticipation for the magic. She formed a loose fist with one hand, placed it in the center of my forehead, and puffed warm air into it. After taking her fist away, she would say “Seal it with a kiss,” kissing me where my forehead was still warm from her breathe.

Every morning I woke up feeling like I had actually gone on the adventures. It was the special kind of magic that moms have and I will always blame Murder She Wrote for ruining it.

Childhood Nightmare

Murder She Wrote isn’t even scary, but there was one episode that snuck into my subconscious mind. I don’t even remember the plot clearly but Jessica Fletcher ended up getting locked in an Irish castle’s ancient dungeon, where it was heavily implied she would be eaten alive by rats if she didn’t get out by the end of the episode.

After, a black door began to appear in all my dreams. There actually was no door: it was just a doorframe filled with absolute darkness. And I never saw it at the beginning of the dream, but I felt it in my gut.

I would be jumping on a trampoline of jello with all my stuffed animals and feel its presence. I would be frolicking through fields of flowers, running free, and be weighed down by it. Eventually, in the dream, I would begin to see it. And even though I told myself not to, I continually glanced in its direction.

I was drawn to it in an almost biological way like monarch butterflies are drawn north on their great migration. Eventually, I found myself closer and closer to it. The closer I got, the more everything else in my dream faded, until it was like watching the television on mute.

Finally, I would walk through the doorframe and that was it. I wouldn’t jerk awake. It was scarier. I had this terrifying feeling that I didn’t exist anymore, that I had been absorbed into the darkness. There were no more dreams after I walked into the darkness. Everything ended and I existed in a state of non-existence until I woke up.

The Nightmare of Ulcerative Colitis

For me, ulcerative colitis is like that doorframe of absolute darkness from my childhood nightmares. When I’m completely healthy, I still feel it in my gut, in the back of my mind, and it weighs me down. The feeling of absolute freedom is gone for good.

Small declines in health are me drawing closer to the doorframe of darkness. It feels inevitable that I will eventually be absorbed by it. As my health declines more, I feel myself getting closer and closer to that doorframe of absolute darkness, and everything begins to blur together, connected only by pain and fatigue.

When I finally pass the threshold, that is when I cease to be me. I’m just a seizing mass of raw nerve endings waiting for the sun to rise. Waiting because I can’t do anything. Not because I’m weak, not because I’m not trying, not because I don’t care but because there is nothing I can do. I just have to wait for healing, for my body to stop attacking itself.

Read more about UC and PTSD and how I compare it to being haunted in Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years

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