My third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
It’s hard to pin down when my third UC flare started. My parents record my current downfall as starting as soon as I took my last Prednisone pill. And if I flip through my food and bowel journal, then I guess they are right. But hindsight helps in making that call.
November through January I felt good. In February 2015 I started having some problems again. I wasn’t having bowel movements every day but a pattern started to develop. For a week and a half, I would have somewhat normal bowel movements but then I would have a very painful day where I would be going every 30 minutes for 6 to 8 hours.
Constipation with Painful Overflow
I described my symptoms to my doctor and she thought I was experiencing constipation with painful overflow every 2 weeks. Both of us did not think it was a flare yet because even though I was occasionally having painful bowel movements,
- My joints weren’t hurting
- I would recover and feel perfectly fine the next day
- My inflammatory markers were still at acceptable levels
She suggested I start taking a dose of Miralax every day and 25 grams of fiber, like Metamucil. The Metamucil made my gas really bad and I was rushing to the bathroom a lot in fear of going in my pants. Eventually, I felt like it was maybe working a little. But I was still on a strange two-week schedule so it was always hard to judge the results.
I had been taking the Miralax and Metamucil fiber supplements for about a week and on February 12, I had a Remicade infusion. The day after the infusion, I got a head cold that lasted for about 4 days (February 13-16). I took Mucinex night time cold and flu once each night and recovered pretty quickly.
Around February 17, 2015, my bowel movements got progressively worse. By the 23rd, I was rushing to the bathroom 15 to 20 times a day with extremely painful cramps and spasms or bowel movements. Because my symptoms continued, my doctor ordered an x-ray of my abdomen to see if I had an obstruction or large stool burden in my colon.
Trying a Flush
On February 27th the results of the x-ray came back. It showed that 50% of my colon had stool in it. My doctor asked if I wanted to try a flush over the weekend to get most of the stool out and I said yes. I figured, better out than in.
I did the dreaded Miralax-Gatorade flush over the weekend, which is when I started experiencing other symptoms such as
- Joint and muscle aches and pains.
Fever and Extreme Pain
By Monday, March 2, 2015, my symptoms had worsened even more:
- I had a 101-degree Fahrenheit fever
- Was going to the bathroom every 30 minutes with either bloody mucus or fully formed stools
- My anus and rectum was burning
- I had constant pressure from my lower back to my anus
- My lower abdomen hurt to touch.
Summary: PAIN PAIN PAIN PAIN. The last two weeks of February and the beginning of March I was basically a quivering mass of raw nerve endings.
The fevers made everything even more painful. At one point, I was huddled in my layers of clothes and electric blankets crying that I just wanted to be normal.
Second ER Visit
It is not often that I break down to self-pity and despair but I had about all I could take. I went to the ER on March 3, 2015, but unfortunately, I didn’t get much help.
I was there all day and even though I was set up to receive IV fluids, I was never given any. My blood was, however, spectacularly splattered everywhere because the nurse dropped some part of the set-up after she stuck me. Each time someone came into my room they would say, “Oh you don’t have an IV, we’ll have to get you one.”
Tests and Procedures
Despite not getting any IV fluids, throughout the day I had various tests and procedures done.
- My blood was drawn and tested
- Urine and stool samples were taken
- A CT scan was done
- A GI doctor performed a proctoscopy on me
I was fully awake and conscious during the proctoscopy, where I got to see all the white ulcers all over my colon. The nerd in me has to admit that actually seeing it live was kind of cool. But it was extremely uncomfortable-especially whenever they took biopsies.
The proctoscopy made it pretty obvious I was in my third UC flare, what with the ulcers and all. The blood results, which came back after I was released from the ER, showed that my inflammation markers were way off the charts.
When it comes down to it, lab results are always the most frustrating for me because they contribute to me not getting help sooner.
I had been getting my blood tested periodically every two weeks. The last blood test I had, two weeks before, during the time when things were starting to get bad, my inflammation markers were still within an acceptable range. To my doctor, this meant that I was not in a flare. But I definitely was.
I should have gone to the ER earlier and being hospitalized would have helped me recover better from my third UC flare. Bowel rest works wonders but can’t really be done properly without being hospitalized.
It wasn’t until I was in the ER that my condition became more clear. The CT scan showed that my whole colon was inflamed and I saw the ulcers myself during the proctoscopy. The GI doctor who did the procedure said, “Yep, you’re in a flare.”
I said-in my head- “NO SHIT-I HAD NO IDEA!” Heavy on the sarcasm.
My story continues in Part IX – Recovering From Two Consecutive Flares
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