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

In the last health update I did, I was stuck in limbo and I’m still there. But April 5^th is looming in the distance, getting closer and closer.

Upcoming UCSF Medical Center Appointment

What’s April 5^th? It’s the day I go to UCSF Medical Center to get the opinion of a GI expert whose research specializes in fertility and new medications. Because Remicade failed on the ulcerative colitis end, my GI doctor wants to switch to a new medication, Entyvio. In her mind, there is nothing more Remicade can do for me.

Unfortunately, Entyvio does not treat my sacroiliitis and other biologics can’t be used in conjunction with it. I’m in a bind and my doctor is hoping that another opinion might open some doors for me.

So while I’ve been waiting to find out the next path to take, I’ve been super busy cooking, baking, and blogging. As always, this blog serves as an outlet for me. In a flurry of creative energy, I’m able to forget about being stuck, I’m able to rediscover my love of food and overcome my fear of it, and I get to say “Fuck You Ulcerative Colitis.”

But here is the glorious contradiction, the bitter irony, the double dilemma. The very things that allow me to say “Fuck You” to ulcerative colitis, that feeds my dreams and aspirations, that gives me hope I can create a job for myself that is flexible to my ulcerative colitis, are the absolute worst for my sacroiliitis.

Sacroiliitis and the specter of pain

Photography and cooking require a lot of time spent on your feet. And I can’t help but remember the time I had an internship at the Cal Academy of Sciences in the Anthropology department.

I was responsible for taking pictures of ethnographic artifacts and doing work in Photoshop on them. My back had been acting up. This was before I knew what was actually wrong with it. I was kneeling, taking a photograph, and in so much pain.

I paused for a moment and felt my molars grinding together because I was concentrating so hard on how to get up off the floor. My mentor asked if I was okay and I answered with a high-pitched, overly happy “aha!” As soon as she left the room I sobbed as I got up.

Choosing which disease I’ll live with

My nightmare is that I’ll have to choose one of my diseases to live with. Pick your poison. Would you rather live your life close to a toilet and be afraid of food or would you rather be immobilized and unable to walk? I flip flop on my answer a lot but I truly believe I’m more afraid of my sacroiliitis.

I’ve felt such freedom not having to worry about it. But the threat of its reappearance in my life is making me take stock of all the activities I love to do. In my imagination I see a red marker striking out almost all of them.

That’s where I am right now. Just waiting and distracting myself by creating recipes, testing them, taking photos, and trying to learn how to do everything better. You’ll be seeing some of the end products soon!

Read about the verdict in Part XI – How Losing My Colon is a Transformation and Not a Loss

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