My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
I’ve not posted these past two weeks because I was experiencing my fourth UC flare. The first Tuesday I missed (January 19th), I was really sick and unable to do anything productive, even write about how I was feeling.
On the second Tuesday, January 26, I was getting discharged from a stay in the hospital. Needless to say, I definitely fell through the doorframe of absolute darkness (see The Nightmare of Ulcerative Colitis).
My UC Timeline
While in the hospital, a lot of the nurses asked me how long I’ve had ulcerative colitis, and I found myself a little blurry on the details. So for my benefit, I’ve made a little timeline.
November, 2013: First flare (I had no idea what was happening to me)
January, 2014: Diagnosed with ulcerative colitis
October 17-21 2014: Second flare, hospitalization, prednisone
February/March 2015: Third flare, ER, and prednisone
November/December 2015: slow decline in health
January 2016: Fourth flare
January 22-26 2016: hospitalization and prednisone
And now here I am, at 4 o’clock in the morning (but I’ve been up since 2:30), writing because my prednisone brain is back in action. Let me tell you a little about how weird and different this flare was.
My Fourth UC Flare
The slow decline in my health and my colonoscopy
My fourth UC flare started with a very slow decline in health over an extended period of time. It started in November and things really started to go downhill after my December 28th colonoscopy. My colon was in good shape and only the tail end of it was slightly inflamed and suffering from colitis.
The day after my colonoscopy I had to go to the lab for a previous order to check on my 6MP levels (which were above therapeutic) and my ESR (an inflammatory marker) was only slightly elevated at 28 (standard range is 1-20).
The steroid retention enemas helped at first but then I felt like they started making me go more and I was unable to get any sleep.
My bowel movements went up to 15 a day with a lot of pain. They were a weird mix of contradictions. I had extreme urges to go, would release a lot of painful gas and pink mucus and that was it. Then I would have extreme stomach cramps, urgency, and my body would painfully push and spasm by itself and only get out a small amount of stool.
The stomach cramps were so bad and I started taking MiraLax twice a day because it seemed to help with them. However, that would cause me to have two or three extremely urgent and also painful liquid bowel movements.
Then I started to get chills, fevers, and joint and muscle aches. This is what really concerned my doctor, because of the type of medications I’m on. I had a Remicade infusion the week before so I could have created antibodies to it or be having an allergic reaction to the serum.
Almost all the medication I’m on also lowers my immune system’s ability to fight off infection, so I could have also caught a simple cold or virus that was instigating my ulcerative colitis flare. My doctor ordered stool samples, urine samples, and a huge blood lab that covered a lot of things, including testing for lupus.
ESR Blood Test
One of the tests I personally always go by and actually understand is the ESR. It makes sense to me, it’s easy to understand, and for the most part, it matches and confirms what my body and mind feel. I know I was suffering from a fever when I had my labs were drawn, which might explain the 63 ESR reading. That is the highest it has ever been for me.
But it also confused me, because despite me being in a lot of pain, I still wasn’t as bad off as the last two flares. During those, I was up to the screaming, crying, and hitting the bathtub hard enough to bruise my hand kind of pain level. This time, I was still in just the moaning, groaning, and whimpering stage.
I then informed my doctor of my recurring fevers and my difficulty in urinating, which had developed over the past two days. Because of this, she decided to have me hospitalized for hydration, pain management, and bowel rest. I skipped the ER and was directly admitted.
While in the hospital I had a sigmoidoscopy done to assess at least part of my colon and so the doctors could collect biopsies to rule out any viruses or bugs that could be causing my symptoms. They didn’t want to put me on prednisone until they were sure it was strictly ulcerative colitis.
This is the part that was weird, confusing, and caused me a little bit of stress and panic. Because apparently, that part of my colon looked pretty good. In fact, it was no worse than when I had my colonoscopy. What!? As soon as the words mild colitis came out of their mouths, my drugged up mind panicked. Yes, I felt I wasn’t as bad off as the last two flares. But mild? My symptoms weren’t mild.
You might ask why this would worry or panic me. I mean isn’t it good that it wasn’t that bad? And yes it is but it also left me with no answers and feeling like I could be classified as the girl who cried wolf.
My GI doctor has said many times, she has to be careful with me because she feels like she doesn’t get the full picture of how much pain I’m in because I’m very clinical about it and have a high tolerance for it.
These results made me feel like I would once more be in a position where doctors would not believe me. This is because of my past experiences with my back. My mom tried to calm me down by saying the sigmoidoscopy only shows the tail end of the colon, not the full picture, and that my doctor would not have hospitalized me if she didn’t think I needed it. But still, I worry now.
Next steps in my UC treatment
I stand at the crossroads now in terms of my treatment. At my last Remicade infusion, my doctor increased the dose to the maximum to try and rein in my colitis. I can’t go any higher but I flared anyway and have to be on prednisone again.
My GI doctor thought it was time to give me the only other option: Vedolizumab (ENTYVIO). In some ways it works similar to Remicade and Humira only it is gut-selective, blocking gut-directed white blood cells that are attacking the GI tract.
It has only been used for 3 years so the long term effects haven’t been studied like Remicade, which has been used for 20 years, resulting in long term studies. But so far, it is considered to have less serious side effects than Remicade and Humira.
However, it does not treat my sacroiliitis. Because of my ulcerative colitis, the only options available to treat it are Remicade or Humira, which can not be used in conjunction with Vedolizumab. Curses.
So that is my dilemma. My GI doctor said she would be in communication with my rheumatologist in order to discover if there are any other treatments, but I’m not overly optimistic. I still have some time, but I’m 98% sure I’m going to give Remicade another go. I almost went a full year without getting a serious flare. Maybe the fifth time will be the charm?
What I’m focusing on now
After my fourth UC flare, I am focusing on:
- Creating food I can eat and digest easily
- Maintaining a balanced diet
- Regaining my strength
I’ve already made a couple of successful recipes but I don’t know if I am up to taking pictures and blogging about them yet.
The featured image at the beginning of the post is part of a hike I do in the hills close to my house. Every time I go through a flare, I lose a lot of strength and it can sometimes be a struggle to walk a block.
I’m not so bad off this time, but tackling this hill has always been the measure of my healing progress. I go at it in sections, doing only parts of it, adding to it when I gain strength until I can do the whole thing and not feel completely exhausted.
Right now though it is so wet even my heavy duty hiking shoes would get stuck in the mud. Because of the weather and cold, I’m going to look at joining a gym to help with my recovery. Last time I focused on walking, running, and hiking, but the weather was nicer then and my knees didn’t hurt as much.
I know this was long so congratulations if you read it all. Here’s to making the next steps, choosing paths, and forging ever forward on the path to healing. Thank you for reading about my fourth UC flare!
Read more about what it’s like waiting for experts to weigh in on my situation in Hanging Out in Limbo
My story continues in Part XI – How Losing My Colon is a Transformation and Not a Loss
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