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My first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema
Although my first hospitalization happened on October 17, 2014, I’m just getting to writing about it now. Healing is hard. And it’s even harder when you almost immediately go into another flare. But more on that later.
My First Hospitalization, October 17th-21st 2014
I was in the ER for about five hours and then admitted to the hospital. This was my first experience being hospitalized and I hope I don’t have to repeat it. It wasn’t a nightmare and I loved my nurses and the fact that I had a room to myself but never again.
For three days I could not have anything by mouth. This was to facilitate bowel rest and it was absolute torture. I am someone who drinks the recommended amount of water per day because I’m always thirsty. Not being able to sip on water throughout the day was a constant nagging annoyance that drove me crazy.
Also, my lips began to get really chapped and they would stick to my teeth. So I would smile sometimes and then try to close my mouth and part of my lip would get stuck. It was funny and a little creepy looking.
I did catch up on a lot of sleep though. Every time the nurses shot me up with steroids and opioids I would get really sleepy and drift off to la-la land. The stress on my body was greatly reduced while in the hospital so that’s why it wasn’t so horrible. My body was hydrated for once, not having anything by mouth really gave my bowels a rest, and pain medication made it possible to sleep.
I had to record all the times I went to the bathroom. Once the number fell to an acceptable level (three) they let me have liquids again. Hallelujah. To prove I could have solids, I had to go through the same process.
Midway through my five-day stay, I noticed that I was swelling up. The wrist band was getting really tight, my hands were swollen, and my knees were gargantuan. When I would get up to walk around I felt like a water bed.
My nurses kept encouraging me to get up and walk around. But I didn’t want to. I can’t remember if any of them explained why walking was so important. Every time the nurses would go through a shift change, they’d lift up my bed covers and gown to check my ankles and knees. They would also listen to my lungs.
Eventually, I learned that they were checking for signs of edema, a medical term for swelling. Excess fluid collects in the tissues of your body as a result of leakage from capillaries. When this happens in the lungs, or pulmonary edema, it can be very dangerous and life-threatening.
Towards the end of my stay, I often felt like someone was sitting on my chest and it was more difficult to breathe. It also felt…wet. Being released from the hospital on the fifth-day mid-afternoon prevented the situation from getting worse.
And during my other hospitalizations, I listened to my nurses and walked. I walk so much when I’m hospitalized that nurses tease me and ask how many laps I’ve done. Because it really is the best protection against edema and makes the overall recovery easier.
After I was released, I spent the whole rest of the week sleeping and losing all the excess water. And then the prednisone started kicking in.
My story continues in Part VII – Being on Prednisone for My Second UC Flare Recovery
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