bloodbrainblog-blog

[bloodbrainblog-blog]

Living With Ulcerative Colitis: Onset, Diagnosis, and Goals

The Onset: What It Was Like Developing Ulcerative Colitis

Disclaimer: I will be talking open and honestly about my bowel movements, colon, and other not-so-fun symptoms of uclerative colitis (UC). If you think that is inappropriate or do not want the following information invading your brain, please leave this site. You have been warned.

Early this February, I turned into a stink bomb, but the prank was on me. The excessive smelly gas, which I shrugged off, only got worse. At first, the doctor thought it might be the Norovirus, but my ass was in for surprise (literally)!

After a week or so of gas, the bathroom became my linoleum hell. Without a minutes notice, a sudden heaviness and cramping in my lower abdomen sent me running to the bathroom. The feeling of urgency is of complete uncertainty and doubt. It’s like having an active volcano irrupting inside your body. You feel like you could blow at any moment. “Can I make it? Can I make it?” The question races through your mind and body like a hell-bent mantra.

Confined in the small stall, pushing my hands against the walls, I battled with the cramping and tried to breathe just so something would come out and give me relief. When the cramping was at its peak, I would bring my snapback to the bathroom with me just so I could grunt into it in a cathartic attempt to release the agony. But I had to breathe and stay calm unless I wanted to make it worse, but it was hard. The stools were loose, bloody, mucousy, and left me smelling like rotten eggs. I would often be in the bathroom for 15 minutes to a half an hour, just waiting to see if I was done. I could easily stand up and have to go again in the time it takes to wash your hands. So I sat and waited for the heaviness and cramps to recede. This happened anywhere from 10 to 20 times a day, and I would wake up 4-5 times in the middle of the night with severe symptoms.

You learn to map out the nearest restrooms quickly when you have urgency problems. You think about your proximity, the size of the bathroom, and the possibility that it’s occupied. And sometimes you can’t make it, so you carry underwear and toilet paper with you. Or sometimes you wake up with urgency so agonizing you renovate your one bedroom home into a two bathroom home by putting a trash bag inside of a bucket. Yup, I’ve had to shit into a bucket. It was embarrassing at first, but in the end, it was a life-saver. I didn’t have to worry about the agonizing sprint to the bathroom and risk it being occupied. It also probably saved me a lot of boxer-briefs.

My symptoms affected my life majorly in two domains: school and work. I missed a couple weeks of classes during my first flare up. I considered withdrawing for the semester so I could get healthy and not mess up my grades as an honors student. That said, I am still in school, learning to manage. As for work, I was fired. I failed to call in early enough on the days that I missed. I was hopeful I could make it in even though that wasn’t the case. 

At this point, I didn’t know what’s wrong with me, and I feared the worse: cancer or IBD.

The Diagnosis: What’s Up Doc?

The doctors thought it was nothing but a virus. After all, ‘tis the season. But after a week trying to tough it out, it didn’t go away. Fast forward through two blood tests and a stool test and the results came back negative. At this point, I’m losing weight and begin to feel very weak. Most of my time was spent watching Netflix and going to the bathroom. It was hard to sustain my attention on anything that required more energy. The stagnation, weight loss, and dehydration caused my body began to like it was sinking. I was tired most of the day and the joints in my ankles, wrists, and back became sore.

Myself, my doctor, and my family didn’t want to see me suffer any longer. My doc prescribed me antibiotics and hyoscyamine just in case it was an infection that the tests missed. However, a few days into the antibiotics, I felt little to no change. Thankfully she has a good relationship with our local gastroenterologist and expedited a colonoscopy, which I head within a few days of making the call. This is about three weeks deep into the onset of my symptoms.

Having colonoscopy was not an exciting prospect, but I knew it was necessary. Moaning in disgust as I drank the laxatives, I just wanted it to all be over. Soon enough it was. As the sedative ran through my body, my tingling hands and feet relaxed and my anxiety was washed away. I woke up a couple times yelling in pain. “Stop moaning and breathe or else you will make it worse,” the doctor said to me in a loud and authoritative voice. Before I knew it, I woke up in the recovery room wondering if I even had a procedure. After the haze began to lift, so the did the uncertainty.

Three days later I got a call from the doctor’s nurse. I was eager to hear what she has to say. At this point, I had been expecting Crohns, but ultimately, I was still in limbo as to what was happening. She tells me I have colitis, more specifically, ulcerative colitis. The clouds parted. The sun was shining. It’s a weird feeling to be happy after being diagnosed. But it’s because I finally got some clarity. Finally, I could start problem-solving and look at treatment options. The relief is short-lived and the realization that I have a chronic illness began to sink in.

I still have yet to meet with the doctor who performed my colonoscopy to talk about the diagnosis, but I will in a week from today. After we talk, It’s likely that I’ll post an update with more details. He did prescribe me Lialda, which I am somewhat hesitant about taking but will try.

From the colonoscopy review, it seems like my UC is not affecting my whole colon. It was a relief too that the pictures of the scope did not look nearly as bad as the ones on Google Images. Even so, I don’t how this would develop moving forward if I hadn’t addressed this problem as early as I did. I’m glad I had stellar doctors and the incredible support from my loving family. I probably wouldn’t be as happy and healthy without them. 

Want to know more about UC is, scientifically? Watch this video.

The Goal: Getting Serious About Diet, Exercise, and Mental Health and Reaching Full Remission

After regaining some energy a week after my first flare up, my bowel movements have become less severe. I have less abdominal pain, they’re not as loose, and there’s not as much blood. I go on average about five times a day, usually in the morning and early afternoon, and I no longer wake up at night with urgency issues.

I’ve gotten back my energy since the first flare up, and it has motivated me to consider what I need to do to be healthy. I have been an active person for quite some time, working out casually about three times a week: running, rock climbing, and doing kinesthetics. I also used to meditate on a daily to weekly basis for about four years, but I began to slip early this semester.

Now, more than ever, I want to challenge myself to be intentional about my health on a daily basis. I feel like being healthy is the most important thing I can do for myself and for the people I love and want to be a role model for. And most of all, I want to do as much as I can to ease the symptoms of my UC in attempt to arrive at remission.

In lieu of my condition and recovered intentions, I’ve started a health journal where I’ll be keeping track of my diet, workouts, meditations, and UC symptoms. My fitness journey will include three main dimensions (for now, as I made this myself based on my own research).:

Veganism: I’ve changed my vegetarian diet, which included a lot of greasy foods and dairy products, to a high carb vegan diet. I’m actually really excited about this. After reading testimonials on the internet about the vegan diet being able to put UC in full remission, I was sold on trying it for myself. They have been able to not rely on pills as well, which is also a point I would like to reach.

Exercise: I’m also going to hold myself to working out five days a week, keeping close track of my progress so that I can become more fit than ever before. This means climbing harder routes, running farther and faster, building kinesthetic endurance, and gaining more muscle mass.

Meditation:  I’m going to hold myself to meditating every single day before bed for at least 10 minutes. From past experience, I know how important it is to be in tune with yourself. It’s easy in our busy lives to ignore the problems we’re dealing with. The unattended mind and body can turn on you and influence you in ways you're unaware of. It’s time I get back into exercise my muscles of attention, acceptance, understanding, and love. It’s time feel whole again.

This all begins today (3/6/2017). Every week, on Monday, I plan on posting on my blog how my week went, how I’m doing on my goals, and how my UC is acting or if it’s in remission. This should hold me accountable and keep my priorities straight. If the updates start to get boring, and if nothing much is changing, I will do short updates or write about something else that relates to health, fitness, or UC.

I know there will probably be a lot of ups and downs, as UC is considered a chronic condition. I know I will have buckle in for the ride and do my best to adapt no matter what happens. I accept the fact that I currently have this condition, and it might not go away, but ultimately, I would like to reach full, or close to full, remission. I’m not sure if this is a lofty goal or not, as I might just be feeling more hope after surviving my first flare up, but it motivates me. At the very least, I think it’s important to try. I want to live as healthy and happy of a life as possible, and whether that is with UC or not, I think that’s a good goal. As for what actually happens, only time will tell.