Part IX – Recovering From Two Consecutive UC Flares

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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:

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:

UC Planning Realities: Trying to Write and Defend a Thesis

Post UC Flare Routine

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:

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