I experienced my first ulcerative colitis symptoms in November of 2013. These symptoms included:
- Excessive and painful gas and upper digestive issues such as
verping (my definition of a mix between vomiting and burping) and acid reflux - An increase in bathroom frequency (15-20 bowel movements a day) with explosive diarrhea
- Weight loss
- Bloody stools
- Intense abdominal pain and cramps, especially after eating
- Joint and eye pain
- Chills and occasionally fevers
- Brain fog, irritability, and mood swings
In January of 2014, I was officially diagnosed with a colonoscopy and upper GI tract endoscopy. A couple of months later I was also diagnosed with sacroiliitis or inflammatory arthritis of the sacroiliac joints.
Many people who suffer from IBD (inflammatory bowel disease; Crohn’s and ulcerative colitis) also have other autoimmune diseases like rheumatoid arthritis, fibromyalgia, and lupus.
As I was going through this whole process, I got tired of keeping everyone updated on my condition. I was also not very good at explaining:
- What ulcerative colitis is
- Why I was experimenting with diet
- How scary food was for me
Mostly, I felt like I was not very good at educating people. But a small part of me was also angry. How could people not know what ulcerative colitis was?
Commercial breaks are littered with ads pertaining to ulcerative colitis. Were these ads just going over people’s heads? And the answer is, yes. As usual, we don’t notice things that don’t affect us.
How I Processed My Ulcerative Colitis Diagnoses
I was getting tongue-tied while trying to describe ulcerative colitis and my experience. And a big reason for that is information overload.
Reading medical descriptions of ulcerative colitis told me what was going on scientifically, but it was cold. I felt like my experience was so much more than what was being described.
I thought writing a summary or synthesis of the different information I was wading through would help me visualize what was happening to my body.
By writing it out in simple language I would also make it easier for others (hello readers!) to understand. So here is my breakdown of ulcerative colitis.
My Understanding of Ulcerative Colitis
Ulcerative colitis is believed to be caused by the interaction of:
- Genes you have inherited. 20-25% of individuals have a close relative with IBD. Damn you, ancestors!
- The immune system’s inappropriate response to healthy and normal tissue. Your immune system is waging war on perfectly healthy organs.
- Environmental triggers such as early childhood diet, smoking, antibiotic exposure, and infections. Early childhood vaccines are NOT associated with IBD development. Anti-vaccinators shut up.
- Gut Microbiome
Once that unique combination of factors triggers the immune system, there’s no turning it off.
Inflammation is the body’s response to what it perceives as a threat. But because the immune system is continually fighting an imaginary threat, damage begins to set in.
Open sores (ulcers) develop on the surface of the colon, which
Malnutrition and dehydration increase until either the flare subsides or medical intervention is needed (aka hospitalization).
Diet and Ulcerative Colitis
In the beginning, I really struggled to find anything I could eat. And I wasn’t getting any diet or nutritional advice from my doctors.
Back when I was first diagnosed, I feel like the medical field did not consider diet a major factor in keeping ulcerative colitis under control and in remission.
But with recent studies on how important the Microbiome is to all systems of the
Among IBD sufferers, opinions vary on the role of diet. Some people swear by diet, others scorn it, and some people fall in the middle. I’m an
My Experiments with Diet
Reading Elaine Gottschall’s book “Breaking the Vicious Cycle” was extremely useful after coming home with a diagnosis.
It helped me understand some of the science behind ulcerative colitis and it gave me a pathway to follow in the Specific Carbohydrate Diet.
One of the allures about a diet is that it sets out rules and steps for you to follow that led to certain results. It helps you feel like you’re in control.
I was desperate for both a path and a feeling of control. Everything I ate bothered me and I was lost on what to try next.
Clinging to Diet
I clung to this diet. Desperately. I wanted it to work. Desperately. To me, it seemed like so many people were able to live medication free lives with diet. And I was determined to be one of them.
I felt like if I gave up I would somehow be bad. Like I was
Most of my time was spent in the kitchen because I made everything from scratch. Traveling and going to restaurants was no fun because there was no food that stuck to the diets I was following.
And with all that work and feelings of isolation, I was still malnourished and having really bad flares that resulted in hospitalizations.
What Works for Me Now
Eventually, I finally decided to stop judging myself and listened to my body. I believe diet has a role in managing ulcerative colitis. But for me, it does not mean excluding a lot of specific types of food.
This means sometimes I shouldn’t eat sweets until my bowel movements have returned to normal. Sometimes this means I need to eat more fiber or none at all. It just depends.
This is how I understand ulcerative colitis. But one of the most important things I have learned is that everyone has a different experience of the disease just as everyone experiences a diet differently.
I try to eat a balanced diet, I go with what works with me, and I pay very close attention to my body because what works or not can change.
My Ulcerative Colitis Story
I have a detailed narrative of my story up in the form of blog posts. Check out my Health Updates if you would like to read a more personal and descriptive illustration of the type of symptoms and emotions I’ve gone through in my struggles.
- 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
