My slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
It’s hard to pinpoint when my second UC flare started. Everything was going so well. I had been feeling normal and healthy so I stopped recording in my food journal. This is a harsh lesson and I’m trying to record consistently no matter how I feel.
Anyway, in September of 2014, I began to have issues. First, I kept getting sick. I would get a small cold and take it easy for a few days and get better. After I felt healthy again I would begin to pick up my activity levels only to catch another cold.
They were mostly head colds but I did catch one stomach virus that left me extremely nauseous for a day. Eventually, I caught a doozy of a head cold that I needed to see a doctor for. It was a sinus infection and I was prescribed antibiotics.
About a week into my round of antibiotics I got a call from Kaiser. The day I went to see the doctor, one of the technicians I interacted with had whooping cough. Because I’m on medication that reduces my ability to fight off infection, I was prescribed another short round of antibiotics.
Second UC Flare Symtoms
Increased Sensitivity to Food
I was experiencing around three bowel movements a day at this point. Apparently, this is not good and a sign of a deteriorating condition. But when for close to three months you became accustomed to going to the bathroom twice that many times, it doesn’t really seem that bad.
Foods that normally were okay for me to eat were causing me to have very painful bowel movements. So, I started cutting foods:
- I cut out coffee completely
- Reduced fruit to only half a cup a day
- Allowed myself only one almond or coconut flour food a day
- Reduced the amount of honey I consumed
These cuts didn’t change how often I went to the bathroom but they did get rid of the pain.
Part of the reason I didn’t notice the severity of my condition was because I had no joint or eye pain and was not feeling the extreme fatigue that accompanied my last UC flare.
Increase in Bowel Movements
By the end of September, the number of my bowel movements were increasing. I contacted my doctor and told her what I was going through and she ordered blood and stool tests. I was expecting to be prescribed another Colocort because my symptoms reminded me of how I was right before I reached remission.
When the tests came back they showed that my inflammatory markers were normal but that my total iron stores (ferritin) were still low. All my stool tests came back negative for the toxins and bugs that can cause trouble in your colon so my doctor scheduled me for a colonoscopy to reassess my colon. She also wanted me to take three iron pills a day to get my iron stores up.
I eventually was scheduled for a colonoscopy on October 22. I started taking the iron pills but that went bad. A lot of people suffering from ulcerative colitis have a really hard time with iron pills. I count myself as one of these people. At best they caused me really bad heartburn or nausea but they also made me vomit violently.
Starting around October 9 my condition got a lot worse. I experienced
- Stomach cramps and spasms
- Blood loss
- Weight loss
- Joint aches and pains
- Eye pain
- Severe chills.
The chills were the worst I’ve ever had. I would have heavy socks, Uggs, flannel pajama bottoms, and three layers of sweatshirts on and be under a sleeping bag with five other blankets and still be freezing cold. It would take me an hour to warm up and then the chills would be gone for the day/night.
I updated my doctor about my developing symptoms and my colonoscopy was moved up to October 16. The next few days were absolutely horrible and I don’t honestly remember much. I was looking forward to going in for the procedure for the pleasure of being knocked out for a couple of hours.
Colonoscopy for Second UC Flare
The day of the procedure came and while I was being prepped, I remember being shocked at how fast my heart rate was. It was around 120 and my blood pressure was all over the place. I was finally given anesthesia but before I knew it I was waking up. I instantly remember thinking that it felt like I had not been out for that long, and I hadn’t.
My doctor came to talk to me and told me that my colon was so swollen and inflamed that she could not scope that far in without risking perforation. She also told me that my latest blood results showed that my anti-inflammatory markers were off the charts. I was most definitely suffering from a UC flare.
She prescribed me Prednisone, a corticosteroid that prevents the release of substances that cause inflammation in the body, and sent me home. I thought the worst was over but that day and night was hell. It was like I was prepping for my colonoscopy again.
I just kept going and going or feeling an intense and painful urge to go. Even though I was drinking water, I wasn’t urinating either. I lived in the bathroom and on the floor dazed and confused and withering in pain.
The next morning I couldn’t take it anymore. I emailed my doctor about what was going on and she immediately got back to me, telling me that the best course for me, considering the severity of my condition, was to go to the ER for IV fluids, bowel rest, and IV steroids.
My story continues in Part VI – First Hospitalization
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