Being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
I was released from the ER the same day I was admitted (March 3, 2015) and had to get down to the business of recovering from two consecutive UC flares. Flares Two and Three happened less than three months apart. That’s not much time. For the most part, I was incredibly ill from September 2014-March 2015.
Post ER Instructions
To help me recover from my UC flares, I was given some post ER visit instructions:
- Go on a low residue and low fiber diet
- Drink plenty of electrolyte fluids like Pedialyte or coconut water with some iodized salt
- Take 60 mg of Prednisone a day
I was ready for the Prednisone to work but I forgot that the last time I had the benefit of getting it injected straight into my veins for four days while in the hospital.
Eating and drinking were still incredibly painful for me. My desire for food was at zero percent and I was basically force-feeding myself for 2 or 3 days until the medicine finally started kicking in.
Increasing the frequency of my Remicade infusions
Luckily my follow-up appointment with my GI doctor was on March 5. She sent me to Infusion to get two bags of IV fluids and an extra dose of steroids to help me recover from my UC flares quicker.
I’m still on 60 mg of Prednisone and blood results show that I have not made antibodies to the Remicade. This means that the only part of my medication routine that is changing is how often I get Remicade infusions. Instead of every 8 weeks, I am now going to go every 6 weeks.
By the end of last week, I was still falling asleep constantly and couldn’t go on short walks without being exhausted. My blood pressure was extremely low and I have been going on daily walks to try and get it up.
This week has seen a lot of positive changes. I am able to go on long walks now or a very short run without spending the rest of the day in a dazed stupor. However, I am still extremely tired throughout parts of the day.
Post UC Flare Diet
My diet is still very boring. I can’t have that many vegetables. Carrots, spinach, parsnips, and mushrooms are pretty much all I can handle and only in very small amounts. They also have to be steamed, sautéed, or roasted. I’m in a similar place with baked and canned fruits.
I’ve added sourdough bread and saltine crackers back into my diet. They give me calories, help slow down my bowel movements, and help settle my stomach.
I was on a strict SCD diet for over a year and while it has helped me a lot, it has not cured me. I will still adhere to most of the diet but until I can add more fiber, I will stick to refined bread and crackers.
Adding Health Updates
I think how I originally set up My UC Story illustrates the kind of optimism I held in the beginning. Each part of my UC story was it’s own page. I didn’t foresee me having to continue to add pages about my healing journey because I thought I would stay in remission.
There is a limit to how many pages a blog can have, so I’ve decided to convert all My UC Story parts into Health Updates blog posts.
Being more honest about my illness
I want to get back to posting recipes and food porn pictures soon but right now, I have no energy for that. I’m struggling every day to get up, eat, not freak out, exercise, work on my thesis, and not fall asleep all the time. Also, food is not my life right now. Originally, I wanted this blog to be about so much more than food.
I realized I wasn’t painting a full picture of my life with UC when family and friends who read my blog were shocked and surprised to find out what I was going through. I didn’t mean to hide my illness.
Food and blogging had turned into a haven and place of positive thinking and creativity. But in my reality
- Food isn’t always safe
- Thinking positively is good but can sometimes be a way to lie to yourself and others
- Creativity is stifled from the trials of illness and healing
I need to be honest with myself and therefore, I need to not only write about food.
Read more about how I’m recovering from these two flares:
My story continues in Part X – Fourth UC Flare
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