I have been living with chronic ulcerative colitis (UC) for nine years. I was diagnosed in January 2010, a year after my father passed away. After being in remission for five years, my UC came back with a vengeance in 2016.
Since then, I’ve been fighting back, and I’m still fighting.
After exhausting all FDA-approved medications, I had no choice but to have my first of three surgeries in 2017. I had an ileostomy, where surgeons removed my large intestine and gave me a temporary ostomy bag. A few months later, my surgeon removed my rectum and created a J-pouch in which I still had a temporary ostomy bag. My last surgery was on August 9, 2018, where I became a member of the J-pouch club.
It has been a long, bumpy, and overwhelming journey, to say the least. After my first surgery, I began to advocate for my fellow inflammatory bowel disease, ostomate, and J-pouch warriors.
I’ve switched gears in my career as a fashion stylist and have put my energy into advocating, shedding awareness, and educating the world about this autoimmune disease through my Instagram and blog. It’s my main passion in life and the silver lining of my disease. My goal is to bring a voice to this silent and invisible condition.
There are many aspects of UC that you aren’t told or people avoid talking about. Knowing some of these facts would have allowed me to better understand and mentally prepare for my journey ahead.
These are the UC taboos I wish I knew about nine years ago.
One thing I didn’t know when I was first diagnosed is that it would take time to get this monster under control.
I also didn’t know that there can come a point where your body rejects every medication you try. My body reached its limit, and stopped responding to anything that would help keep me in remission.
It took about a year until I found the right combination of medications for my body.
Never in a million years did I think I’d need surgery, or that UC would cause me to need surgery.
The first time I heard the word “surgery” was seven years into having UC. Naturally, I bawled my eyes out because I couldn’t believe this was my reality. This was one of the hardest decisions I’d have to make.
I felt completely blindsided by my disease and the medical world. It was hard enough to accept the fact that this disease has no cure and that there’s no concrete cause.
Eventually, I had to undergo three major surgeries. Each of these took a toll on me physically and mentally.
UC affects more than just your insides. Many people don’t talk about mental health after a UC diagnosis. But the rate of depression is higher among people living with UC compared to other diseases and the general population.
That makes sense to us, the ones dealing with it. Yet I didn’t hear about mental health until a couple years down the line when I had to face major changes with my disease.
I always had anxiety, but I was able to mask it until 2016 when my disease relapsed. I had panic attacks because I never knew how my day would be, if I would make it to a bathroom, and how long the pain would last.
The pain we endure is worse than labor pains and could last on and off all day, along with losing blood. The constant pain alone could put anyone in a state of anxiety and depression.
It’s difficult to deal with an invisible disease plus mental health issues on top of that. But seeing a therapist and taking medication to help cope with UC can help. This is nothing to be ashamed of.
Surgery is not a cure
People always say to me, “Now that you had these surgeries, you’re cured, right?”
The answer is, no, I’m not.
Unfortunately, there isn’t a cure for UC yet. The only way I was able to enter remission was to have surgery to remove my large intestine (colon) and rectum.
Those two organs do more than people think they do. My small intestine now does all the work.
Not only that, but my J-pouch is at a higher risk for pouchitis, which is inflammation of my J-pouch. Getting this frequently can result in needing a permanent ostomy bag.
Because this disease is invisible, people are usually shocked when I tell them I have UC. Yes, I may seem healthy, but the reality is that people judge a book by its cover.
As people living with UC, we need access to a restroom often. I go to the bathroom four to seven times a day. If I’m out in public and need a bathroom ASAP, I’ll politely explain that I have UC.
Most times, the employee lets me use their bathroom, but hesitates slightly. Other times, they ask more questions and don’t let me. This is so embarrassing. I’m already in pain, and then I get rejected because I don’t look sick.
There’s also the issue of not having access to a bathroom. There have been times this disease has caused me to have accidents, such as when I’m on public transportation.
I was not aware that these things would happen to me and I wish I was given the heads up, as it’s very humiliating. I still have people question me today and it’s mainly because people aren’t aware of this disease. So, I take the time to educate people and bring this silent disease to the forefront.
Before my diagnosis, I ate anything and everything. But I drastically lost weight after my diagnosis because certain foods caused irritation and flare-ups. Now, without my colon and rectum, the foods I can eat are limited.
This topic is hard to discuss since everyone with UC is different. For me, my diet consisted of bland, lean, well-cooked proteins like chicken and ground turkey, white carbs (such as plain pasta, rice, and bread), and chocolate Ensure nutrition shakes.
Once I entered remission, I was able to eat my favorite foods again, like fruits and veggies. But after my surgeries, high-fiber, spicy, fried, and acidic foods became hard to break down and digest.
Modifying your diet is a huge adjustment, and especially affects your social life. A lot of these diets were trial-and-error that I learned on my own. Of course, you can also see a nutritionist who specializes in helping people with UC.
A great formula to get through the many taboos and hardships that come with this disease is this:
- Find a great doctor and gastrointestinal team and build a strong relationship with them.
- Be your own advocate.
- Find support from family and friends.
- Connect with fellow UC warriors.
I’ve had my J-pouch for six months now, and I still have many ups and downs. Unfortunately, this disease has many heads. When you tackle one issue, another pops up. It’s never-ending, but every journey has smooth roads.
To all my fellow UC warriors, please know you’re not alone and there is a world of us out there who are here for you. You are strong, and you’ve got this!
Moniqua Demetrious is 32-year-old woman born and raised in New Jersey, who has been married for a little over four years. Her passions are fashion, event planning, enjoying all types of music, and advocating for her autoimmune disease. She is nothing without her faith, her dad who is now an angel, her husband, family, and friends. You can read more about her journey on her blog and her Instagram.