Being on Prednisone for the first time for my second UC flare and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
At first, I didn’t notice any symptoms from being on Prednisone. But by October 27, 2014, my brain would not shut up. It moved a mile a minute and I had so much excess energy. My family got exhausted watching me. I would sleep for two hours and then be back up, mind and body racing a mile a minute.
This blog actually started with all that excess energy. I researched blogging and photography non-stop for a month and then started creating recipes, photographing food, and writing. It was a great outlet for me but my focus was slightly obsessive.
Psychiatric Adverse Effects of Prednisone
Even though I had excess energy, the Prednisone turned it into a complicated obsessive and emotional stew that was constantly boiling over. I could not for the life of me direct the energy and drive to other aspects of my life. Working on my blog was the only thing I could do.
I was extremely sensitive and would have emotional break downs, instigated by something that interrupted my routine. For example:
- A grocery store not having a specific ingredient
- Not being able to finish a project
- Being unable to run the errands I needed to, etc
All of these things would set me off. I would walk around looking for what I needed or I would stare into space. And a heavy pressure in my throat would build and build and I wouldn’t be able to talk. It felt like I was literally choking on my words. I could only step back, cry in my room, breathe deeply, and then rejoin the world.
Mercaptopurine (6MP) and Allopurinol
You can’t be on Prednisone for a long time because of the side-effects. But you can’t go cold turkey on it either. My doctor slowly reduced the amount of Prednisone I was on and added new medications to bolster the Remicade.
When you go into a flare while on Remicade and have to take steroids to get better, more medication has to be added. Once the steroids are taken away, your body struggles to maintain remission. I was put on Mercaptopurine (6MP) and eventually on Allopurinol as well. 6MP can cause uric acid levels to increase and Allopurinol helps the body metabolize the toxins faster so that you don’t get a toxic build-up.
So there I was, blogging, creating recipes, and taking pictures while healing and monitoring my health through food journals and bi-weekly blood tests. I was focused on the positive but sometimes it’s hard to see your symptoms creep back into your daily life.
My story continues in Part VIII – Third UC Flare and Second ER Visit
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