Six months of UC

Six months of UC

This week marks 6 months since I was diagnosed with ulcerative colitis (UC), and I wanted to share some thoughts on what has changed in my life because of this.

The Diagnosis

Last year, around September, I started to get stomach pain and sudden urges to run to the restroom. This led to a few months of ups and downs where the symptoms would subside for a day or two and then come back again. There were some stressful life events that happened, one big one being that our kitchen was water damaged, leaving our whole house in disarray and making being at home feel really uncomfortable.

By November, I had gone to get blood tests and stool sample tests, but they didn't find anything conclusive. I was told if my symptoms kept getting worse, I should go to the ER and get some help.

It was mid-December when the symptoms had gotten to a point where I was getting up in the middle of the night, none of the things I had tried helped, and during the day, I would get sharp pains in my stomach area. Things I had tried included eating a different diet, CBD drops before sleep, eating probiotics to help my stomach digest food, and eliminating things from my diet, but none really made a difference.

The worst feeling was that by mid-December, our kitchen was done and we were putting the finishing touches. We attached some updates to the bathroom, and one of those was upgrading the shower. Kristen asked me to help her put up the shower curtain, and while holding it up, my arms were shaking, like I had been holding it for hours, but it had been less than a minute at best. I told her that I was feeling too exhausted to help, so I went to sit down. Later that night, I was walking upstairs, and my legs felt so weak I had to hold on to put some of my weight on the wall.

It was December 20th or 21st, I don't remember the exact day, but Kristen and I were walking, and she convinced me to go to the ER because my symptoms weren't getting any better. After we got home, I packed a bag and went to the ER.

When I was at the ER, it took a long time to get some help, almost 6 hours of waiting, but they determined that I needed to have some blood drawn for tests. As I described the pain, the doctor asked if I wanted some painkillers, and I said yes. They gave me some sort of steroid that took the pain away in seconds, and it led to me feeling "normal" for the first time in almost 4 months. They informed me that I needed to stay the night and have more tests done over time. This was still during the pandemic, so they also did COVID tests, but those were not a concern. I slept through the night with not much trouble, except maybe an empty stomach.

In the morning, I was woken up by a doctor who told me she was the ER gastroenterologist. She explained what was going on with my symptoms and that she was going to ask her supervisor to see if a sigmoidoscopy could be done to quickly figure out what's causing all the pain. As I waited, I was told later in the day that they could do the sigmoidoscopy within an hour or so. This was great news because it meant I wasn't going to stay at the hospital much longer.

After the procedure, it was going to be an overnight wait until the person who looks at those labs could tell us anything. Luckily, they were able to look at it around 7 am, and I was able to get information within the next few hours. I stayed at the hospital for a total of 2 ½ days, and it was immensely worth it. I should mention this is OHSU, which has been the best hospital I've ever worked with.

The Medication and Care

When I left the hospital, I was given a prescription for steroids, prednisone, which are very strong and effective painkillers but are not good for long-term use. Since Christmas was coming up, I was glad to be home by the 23rd, and on the following Monday, the hospital called me to schedule an appointment with their gastroenterology specialist. When I met him the following week, he spent almost a whole hour going into what UC is and how to live with it.

The highlights are:

  • It's an autoimmune disorder where the colon becomes inflamed and attacks itself, thinking I have an infection.
  • There is no cure for it.
  • There are a lot of medications and treatments available, and usually, you start with the mildest and safest medication.
  • There are no known triggers for it; e.g., you can't catch it from someone else, it's not caused by a known gene, and it's caused by environmental factors. But my doctor said that usually, people will start having UC symptoms when they're stressed.
  • Age is not a factor; some people have it as early as puberty, and others are diagnosed later in life.
  • Some people will have flares that come and go; others will have years-long flares. Flares are controlled by taking medication or getting some other treatments.

My UC was caught relatively early compared to others, and so the medication I've been prescribed is mesalamine. Mesalamine is a relatively safe medication mainly because it goes into the colon and releases small granules that suppress the immune response, which helps the symptoms settle down, and I feel a lot better. After a few days of taking it, my stomach pain went away, and I was going to the bathroom regularly.

One piece of good news is that my diet does not need to be very strict, just healthy food and eating often enough to keep me fed. Some people on the internet say that fiber affects them negatively, but for me, that hasn't been the case.

Improving My Daily Life Because of UC

The weeks following my hospital visit were the most enlightening time of my life. I had a new lease on life. Every day since has felt like a gift. I've been eating breakfast every day since then. Before UC and all this, I rarely ate food for breakfast; I just drank some coffee and started my day. I slowly reintroduced coffee into my diet, but it has to be with food. Mesalamine needs to be taken with food, so that's a good prerequisite.

The first few weeks were a combination of taking mesalamine and prednisone to make sure the pain wasn't unbearable, and I had to taper off of it over a month, from 40mg of prednisone twice a day to eventually 5mg once and then none. While I was taking the prednisone, I also learned that it gives you mood swings, which weren't great, and it makes you insanely hungry and energetic. The latter two I used to eat more and work out a lot more. This started my exercise stint. Now, almost 6 months in, I feel weird if I don't work out during the day, and I love the feeling of getting some energy burned off from the exercise.

As life has come around, I was afraid that the routines I had built were going to disappear or become secondary in my life, but so far, I've noticed that anytime I veer off a little, my body starts to not feel so great. I get UC symptoms coming back, and an anxiety of unhealthiness comes about, so I have really tried not to get too far away from my routine. Traveling has been a challenge because the timezones change, the food changes, and just taking my medication at different times can be a bit of an alarm to my body, but coming back home helps.

In April and May, I traveled twice, and both times felt like a bit of a risk, but I was overall okay.

After realizing how close you can get to a life where travel isn't possible or every day you can spend in pain, I am thankful for how much medical science has progressed and for all the care the medical professionals I interacted with had. Having a supportive circle of friends and family has also been very strong in recovering and improving my health.