Ulcerative Colitis: the story of a sick, bleeding colon

I remember growing up and priding myself on the fact I had never really been sick. I had never had surgery, broken a bone, spent any time at the doctor beyond the occasional check-up.

Then came 2013. And the autoimmune diseases started. I was 23. 

I was diagnosed with Celiac Disease after a summer of weird symptoms, but not a lifetime of discomfort. There was one weekend of me puking with a ton of stomach pain, a blood draw, and a diagnosis of Celiac disease. 

I had to cut out gluten cold turkey. Cold turkey sandwich, hold the bread, FOREVER. 

But my symptoms didn't get better. 

I had blood in my poop. Regularly. 

I had a colonoscopy during Christmas break of 2013. Not my favorite way to spend a holiday. Results? "You have an irritated colon: here's some steroid cream to stick up your butt, you should be better soon." 

Fast forward to June of 2015. It's now been about two years of blood in my poop. Keep in mind I am living in rural Alaska where there is just a medical clinic with one doctor. To fly into town for any specialist, it costs hundreds of dollars just to get there. And, I'm a pathetic young adult that hates making any kind of appointment, and likes to the live the "if I ignore it, it will go away" life. 

Less than two weeks before my wedding, after another colonoscopy, I finally was diagnosed with Ulcerative Colitis. I had dropped about 15-20 pounds in the last couple years; I had attributed it to a change in diet being gluten-free, and a pretty consistent gym life which had never existed before. Looking back, I was also very sick. 

But the sickness had JUST started. 

I don't remember it being that bad in those previous years, but that first year of our marriage, I was the sickest I had ever been. 

To explain Ulcerative Colitis: it's an autoimmune disease in the Inflammatory Bowel Disease (IBD) family, along with Crohn's disease. Ulcerative Colitis usually mostly affects the lower part of the colon, literally having inflammation and ulcers along the lining of the colon. It's a chronic disease, which means there is no cure. For some more serious cases, the colon becomes so sick, they have to remove parts of it to keep you alive. Here are some links for more medical deets if you're interested: 

- Crohn's & Colitis Foundation

- Mayo Clinic

Now what does this mean? Think about having a gaping wound inside of one of your organs. It affects everything. When your body is sick and hurt like this, it's working hard to heal itself, and it's exhausted, ALL THE TIME. 

Other, more nitty gritty details of how Ulcerative Colitis affected me at it's worst:

- when I had to poop. I had to go THEN. There is no time.

- when I got sick, it was a back and forth to the toilet 10-20 times in an hour. 

- blood. I said blood. 

- intense stomach pain.

- insane bloating. Like, looking 6 months pregnant kind of bloating.

- ironically: constipation. 

- so, so tired. all the time.

- some of that attributing to having to get up to sprint to the bathroom 10 - 15 times a night.

- every time I would lay on my left side, I would have to immediately get up and run to the bathroom. 

- constant medication trial and error.

- a year of being on and off prednisone: the steroid from hell.

- for symptom relief, I put myself on an extremely strict diet. I could pretty much only eat mushy, bland food for about 6 months. 

Think about how this reality would affect you.

It was hard to go anywhere. I pooped my pants, multiple times: in the car, at work, walking through an outlet mall. Any time it hit and I couldn't get to a toilet fast enough. You live your life trying to figure out where the closest bathroom is wherever you go, just in case.

I had to use enemas. Do you know what those are? Bottles of liquid medicine you put in your butt every night before you go to sleep. EVERY NIGHT. Thankfully, this is what actually helped me get better. Not the sexiest thing for a woman in her first year of marriage. Heh.

I had to leave work often. There's not a lot you can do to supervise students when you have to run back to the toilet every five minutes.

Pre-prednisone - May 2015

Steroids made me crazy: I gained twenty pounds in one year (see photo difference), even though I was on an extremely strict diet and was really active. They made me super irritable, have insomnia, and depressed.

Feeling sick ALL THE TIME, made me withdraw from everyone. I didn't want to commit to plans in case I wouldn't be feeling well. And I didn't want to spend time with people when I wasn't feeling well, because I felt like such a downer to others. I didn't want to answer the question: "how are you feeling" because the answer was always "terrible." I felt like a drain on everyone, and become a pretty unpleasant person to be around. 

I became pretty hopeless. It was about nine months of feeling terribly sick, and not seeing the light at the end of the tunnel. I had withdrawn from all my friendships, become bitter and self-pitying, pushed my husband's limits of sympathy and grace, and settled into a resigned depression. 

Post-prednisone - May 2016

This is the part that I beg others to hear. If you know someone with chronic illness; please understand this part. Being sick or in pain for an extended period of time, likely the rest of their life if they have a chronic illness, is SUCH a defeating reality. It's hard to find hope in this daily sickness. Don't let them disappear. Seek to understand their reality, to sympathize, and to meet them where they are. Be gracious when they cancel plans, even offer to bring them food or come to them instead. And I have only had a small taste of what life with chronic illness is; I was only sick like this for a year. Many illnesses don't go into remission; and this is their daily reality, for years. Pray for them. 

I didn't lean on the Lord in this time. I was too frustrated and hopeless. It caused much conflict in our marriage. I had decided to be miserable. 

And, in the Lord's kindness to me, my body went into remission. Yes, UC cannot be cured, but it can go into remission. The symptoms will calm down, the ulcers will heal, and the pooping 10-30 times a day will go away. So, after months of steroids, and multiple drug trials, everything calmed down. I was able to wean off the steroids and the enemas and remain on a maintenance pill to keep things in remission. I was able to starting eating more foods without reactions. I was able to say "just gluten free" with excitement when asked what my food restrictions were. By the summer of 2016, I felt relatively "normal."

This is not the end of my story with Ulcerative Colitis. That's the thing with a chronic illness; it will flare up again. For me, it flared up in my first pregnancy (another post for another time) after two years in remission.  

But. Today. Today I am symptom free and SO thankful. And while I know it was so hard for me, I know others have had it so much worse. 

But that's the thing about chronic illness, or any illness really: we realize how fragile we are. How limited we are in these physical bodies. We aren't meant to have it all together. Our limitedness, our humanness, is meant to draw us to the one with no weakness, no limits: our heavenly Father. 

And the thing about illness: it's temporary. It's all temporary, even chronic illness. This life is only temporary; and our limitedness, frailty, humanity should bring our focus directly to eternity. An eternity without tears or pain or sickness: that is our end for those of us who know Jesus. 

So, when you get sick next time (hopefully only the common virus), think on this. Thank God for your limits, your humanity. For this is what brings us to our knees before our creator. The ultimate healer, for eternity.