Eat the Cake

It’s officially been 5 months since my diagnosis and I am finally ready to speak out about my disease. I struggled with this decision because anyone who knows me, knows I’m not an open book, and UC can be a very personal and embarrassing disease. I also didn’t write this looking for attention or sympathy. I wrote it to bring awareness and knowledge of this ‘invisible disease’ to you, in hopes that it will open your eyes the way it has opened mine.

In May of this year, I was hospitalized and diagnosed with an autoimmune disease known as Ulcerative Colitis.

Ulcerative colitis (UC), according to Wikipedia, is a long-term condition that results in inflammation and ulcers of the colon and rectum. The primary symptom of active disease is abdominal pain and diarrhea mixed with blood. Weight loss, fever, and anemia may also occur. Often symptoms come on slowly and can range from mild to severe. Symptoms typically occur intermittently with periods of no symptoms between flares. Complications may include megacolon, inflammation of the eye, joints, or liver, and colon cancer. The cause of UC is unknown. Theories involve immune system dysfunction, genetics, changes in the normal gut bacteria, and environmental factors. Dietary changes may improve symptoms. Several medications are used to treat symptoms and bring about and maintain remission. Removal of the colon by surgery may be necessary if the disease is severe, does not respond to treatment, or if complications such as colon cancer develop. 

For most people, including myself up until now, you get sick, go to the doctor, get some medicine, and feel better. But this time, that wasn’t the case…and that was a very hard pill to swallow. I have an autoimmune disease. I have a lifelong illness. This took a very long time to actually sink in. To go from being a perfectly healthy, active, young adult, to hearing the words, disease, colonoscopy and cancer, it all felt like a bad dream. And to make it even worse, there were no clear-cut answers to any of my questions. They did not know what caused the disease, they did not know how to cure the disease, and they did not know which drugs would work, because everyone responds differently. It was complete trial and error.

To start, I was put on high doses of steroids, which is the first go-to drug for many autoimmune diseases because it helps control inflammation. But over time it shows it’s ugly face, with a laundry list of nasty side affects such as night sweats, insomnia, facial hair growth, mood swings, depression, anxiety, trouble focusing, facial swelling (aka moon face), blurred vision, hair loss, acne, and osteoporosis, just to name a few. I was also put on a drug called Lialda, which ironically, if you don’t tolerate can exacerbate your UC symptoms. These drugs got me released from the hospital, only to be back about 10 days later. Now we were discussing what they call biologic drugs; one, a self-injection and one and needle infusion, both immunosupressants that come with serious risks, such as increased chances of developing lymphoma, or even lupus-like-syndrome, where you have the symptoms of lupus without having the disease itself. Fun right? So now, I had a decision to make. Stay in this flare and hope the other medications start to work, or start a biologic with all these scary side affects? I wasn’t really liking my options, but the answer soon became very clear to me. One morning, as I was sitting on the toilet in the hospital, all of 98lbs, bleeding out of one end, vomiting out of another, and being injected with IV pain meds, I knew right then and there that I had had enough. I couldn’t do this anymore. I wanted and needed a stronger medication. And that was that. I was released from the hospital for a second time and began my Remicade infusion the next day.  

First Remicade Infusion...feeling hopeful

The infusion was a 3 hour IV treatment that I would repeat in 2 weeks, then 4 weeks, then every 8 weeks for life. But 2 weeks passed, and no improvement. Then another 4 weeks passed, still no improvement.  Every doctor visit was the same, wait for the medicine to work, give it time. I was getting really sick of hearing that. On top of it, my doctor seemed so desensitized to it all. She had known about UC for years, I had only known about it for 2 months. This was all new to me, and all I wanted were answers and some reassurance, which I never got. To her, I was just another patient who she saw every couple of weeks.  She didn’t seem to care about all the days in between that were a constant struggle. I would wake up every morning needing to urgently use the bathroom multiple times before 6am, and most of the time I couldn’t get back to sleep. I couldn’t eat anything without experiencing instant cramping and discomfort. Her answer, some more pain meds, which didn’t really work and just made me even more dizzy and tired. I was tired and angry all of the time. Some of that was because of the steroids, but most of it was because I still had not accepted what was happening. I was in the honeymoon stage of my marriage. We were supposed to be enjoying life, going on dates, spending time with friends and family, but instead here I was, needing my husband wait on me hand and foot, take care of the house, and see me at my absolute worst. We had been planning on starting a family and now that all had to be put on hold because of me. It felt so unfair. It was one thing for my life to be ruined, but why should his be ruined too? I couldn’t help dwell on what this disease had taken from me. It took 35lbs. And that wasn’t just a number on the scale; it was all my hard earned muscle. It was every PR, muscle up and 155# snatch that took me years to accomplish, gone in a matter of weeks. It took my ability to eat and enjoy food. It took away my option to start a family. It took away my self-esteem and confidence. It took away my one year wedding anniversary, and standing next to my best friend at her wedding. Two things I would never get back. 

A photo Ryan snapped of me looking not so great

I swear dogs can sense things. Oscar never left my

side and would even lay on my feet in the bathroom.

I began getting very depressed. I wasn’t talking to my friends and I wouldn’t allow any visitors. I didn’t want anyone to see me like this. It was easier to just shut everyone out, rather than deal with the reality of it all. I was embarrassed, ashamed, and super self-conscious. I couldn’t look at myself in the mirror without being absolutely disgusted, embarrassed and scared just watching myself wither away.

The difference of 35lbs

By the 3rd infusion my symptoms began improving, I was no longer bleeding, and the pain and cramping from eating was getting better, but it was if I had hit a plateau. I felt weak, and was still tired all of the time.  Stuck at 100lbs, I couldn’t gain weight even though I was consuming close to 3,000 calories a day. The days began blending together as I ate the same gluten free, dairy free, soy free, low fiber foods every day with no change and no progress. This went on for a little over a month until one day I had an incident that landed me back in the ER. 

I was getting ready to head out for my 8 week Remicade treatment when I began to feel very dizzy and hot. I knelt down on the floor, and waited it out. It seemed to pass so I started out the door when it happened again, but this time everything went white. I sat on my front lawn and as soon as my vision returned I ran inside to bathroom where blood began pouring out of me. Next thing I remember was laying on the floor of my bathroom, blood everywhere and dripping with sweat. Luckily, I had my phone and was able to call my husband, who was at work, and he rushed home and insisted I go to the hospital. I was reluctant at first, but knew he was right. I was so upset and scared, but mostly angry and confused. How could this be happening? But little did I know, it was all a blessing in disguise.

The on-call doctor at the hospital that day happened to be the owner of the GI practice I went to, and he was brilliant. He was not happy that I was on high doses of steroids for as long as I was, and he was not happy that I still had so much inflammation after so long and that nothing was being done to better control it. He scheduled me for another 0, 2, 4 and 6 week doses of Remicade, took me off Lialda, and put me on a another drug called 6mp, which is a chemotherapy drug that can also be used for UC. He also suggested that I begin getting iron infusions because apparently I was anemic and that was likely what caused me to pass out. 

One days worth of pills and supplements

Since that day, I have been doing much better. I put on 15lbs and have been able to introduce many foods back into my diet. I am finally being weaned off the steroids and am almost done, but will be left with the side affects for a few more months. I am still dealing with anemia and am not yet in remission but am hopeful that I will be there soon. I have also been back at the gym for about 3 weeks and am working very closely with my husband to gain back my strength in a safe and healthy manor. I am completely starting from the beginning, and it has been very hard to not get frustrated. But I am learning to just appreciate being back at the gym with my friends and looking forward to getting to PR everything all over again.

Now that you have heard my story, you can see why UC is call the ‘invisible disease.’ There are so many autoimmune diseases out there, and so many more people affected than you know.  And just because they look ‘normal’ on the outside, you have no idea what they are struggling with on the inside. There is a quote that seems very fitting “Be kind, for everyone you meet is fighting a hard battle” So I urge you, treat people with respect because you have no idea what they might be going through. Cherish moments with friends and loved ones because they are truly the most important things in life. Don’t sweat the small stuff, because life is too short and unpredictable. Learn to not take anything for granted and appreciate everything you have in life. And most importantly, no matter what struggle you are faced with, whether it be an autoimmune disease, the death of a loved one, or even a bad day at work, you are stronger than you think. So be sad, throw your pity party, and move on. Spend time doing things you love, surround yourself with good people and you will be able to conquer any obstacle life has to throw at you.

And when faced with the question of whether to eat the cake, or not eat the cake…always eat the cake :)