How I was (finally) diagnosed with Crohn's Disease

Tuesday, April 16, 2013

I bet you are soooo excited to read this. I mean, that is one sexy post title, eh? But seriously, I have been meaning to write a post on Crohn's and what it's like for me, since I was recently diagnosed in December after trying to figure it out for 15 months. Crohn's is something that can easily go undiagnosed because it has so many similarities to other diseases, or it's just chalked up to having a sensitive stomach. Warning: this post is lengthy and gets a little graphic! :)

Looking back, I have probably been having symptoms of Crohn's for several years now, but they were few and far between, and I always assumed my stomach hurt or was upset due to something I ate. We all get tummy aches, right?

I was a newlywed when I realized it had to be more than just something I ate. It was September (we got married in July) of 2011. The symptom that tipped me off was that I was bleeding every now and then when I had a BM. I had noticed it for a few months, and I thought it was just a fluke or maybe I was straining (sorry to be blunt). I mentioned it one day to Alex - what a super-sexy newlywed convo that was! - and he was like "What? You're bleeding? That is not normal! How long has this been going on?" I sheepishly admitted that it had been happening for a few months, albeit rarely, but it was starting to be more common. I told him I had also been having some stomach pains for a few months, but I had assumed it was due to stress and nerves surrounding the wedding, and the very, very stressful job I had at the time. That week, I made an appointment with a gastroenterologist that a good friend recommended to me.

Thank the Lord my friend warned me of what was probably going to happen at that first appointment! As soon as the doc heard "bleeding," he wanted to take a look. And probe. It was unpleasant/awkward/embarassing to say the least. He then said I needed to start with a colonoscopy to try to nail down what was going on.

In October 2011, I had my first colonoscopy. If you haven't had one, you really should go get one for the hay of it - it's so much fun! Ha. Actually, it wasn't as bad as I had feared. I was, however, the youngest person in the endoscopy center by at least 30 years. After the scope, when I was still high from the anesthesia (thankfully the hubs was there to listen!), my doc told me that my bowels looked fine but that my rectum looked irritated, which he called proctitis. He prescribed a smattering of oral meds and suppositories to combat it. None of them worked. And some of that stuff was crazy expensive, even with insurance. Meanwhile, my symptoms were showing up more and more frequently as the months (and different medications) went on.

In May 2012, I started tracking my calories and getting real about losing some of the Newlywed Nine that I had put on (thanks Sandals, the "Luxury (aka a million calories) Included" resort!). I was sticking to a pretty strict, but healthy, diet. A typical day was oatmeal for breakfast, an apple, yogurt, and triscuits for lunch, and a balanced dinner with lean meat and a lot of veggies (esp. broccoli, my fave). Then the craziest thing happened: as I started to eat "better," my symptoms were quickly becoming the worst they had ever been. By the end of May, I was showing symptoms every single day, for pretty much all day. I was miserable.

What were my symptoms, you ask? I was bloated, horribly. Like, I looked pregnant. My stomach hurt and I had abdominal cramping. I sometimes felt like I had a baseball stuck under my rib cage. I felt like I was going to have a BM about every hour, so I would rush to the bathroom and only bleed. I was bleeding so much that it was scary. I was either constipated, or couldn't stop going. I started getting really nauseous throughout the day and a few days, I vomited in the morning before work. By the end of the month, I had to stay home from work for a few days even though I had just started a new job. If I hadn't just started a new job, I would have probably been at home in bed for the last solid week of May.

By the night of May 30, I was in a bad, bad place, y'all. I felt bad enough that I thought I needed to go to the ER or at least Urgent Care, but as luck would have it, I was uninsured for one day and one day only that year: May 31. Because I has just changed jobs, my old coverage was for only 30 days after my last employed month (until May 30), and my new coverage was starting June 1.

I stuck it out and went to the ER the morning of June 1. I decided to go to the Emergency Room for a few reasons: my gastro had not yet found that I had anything to worry about with his diagnostics so far, so I thought maybe it was something else entirely, like my appendix or gallbladder. Plus, I thought that since my gastro hadn't figured it out, maybe a fresh new set of eyes would.

I told the ER doc my symptoms, but all he seemed to hear was that I was vomiting in the morning. He was convinced I was pregnant. Sorry dude, but I was on my period at that very moment so I was most definitely not with-child. He ran a series of tests, including lab work and a CT scan, and told me that everything looked "normal." He sent me home with a few prescriptions for pain killers and anti-nausea meds. I felt so defeated though because I knew the symptoms I was experiencing were NOT "normal."

I went to my gastro a few days later, and he was concerned that I was bleeding so much and had a lot more pain. He put me on Prednisone, a steroid, to help with the inflammation in my intestines that was believed to be causing the problem. He told me that if I wasn't feeling better by the end of June, that we would do another colonoscopy.

But the Prednisone worked really well, and within 2 weeks, almost all my symptoms had subsided. I cancelled the colonoscopy. Then my gastro suddenly retired, and I was assigned another doctor in the practice. For the rest of the summer, I felt okay for the most part because I was still on the steroids. But when I started tapering off of them in late August, the symptoms slowly returned again.

By late September, I was feeling pretty bad again. The symptoms escalated again and, although hard to believe it, they seemed even worse than the last time. Alex was adamant that I go to the ER for a second time one Saturday night. They pretty much did the same as last time: more painkillers and more anti-nausea stuff, but they also put me back on Prednisone for a quick 4-week round. I called my gastro that Monday and demanded that I have an endoscopy along with the colonoscopy that was already scheduled for October. After some begging, he agreed to do it.

In October, I was just finishing the second round of Prednisone when I had my second colonoscopy and first endoscopy. When my doc came to chat after the scopes - again, when I was still high - I was downright elated when he told me he'd spotted lots and lots of ulcers in my upper GI tract during the endoscopy. So everything wasn't "normal" after all! Ha! The ulcers explained some of my symptoms. But still, he needed to see how far into my small intestine the ulcers went to determine the cause.

Next up? A capsule endoscopy, where you literally swallow a camera the size of a large pill and it takes video and images of your digestive track allllllll the way through until you "pass" it. It was a little disturbing to swallow a little camera that had a blinking light on it, but alas, it did its job. And its job was to diagnose me with Crohn's.

A few weeks later at my follow-up, once my doc had time to review the "footage" from the capsule endoscopy, I could tell my doc didn't want to say it. He was so nice about it. But he ended up blurting out, "The capsule showed what looks to be classic Crohn's." And there it was. What I had been expecting for awhile. Regardless of the fact that there is no cure and it never goes away, it was a form of relief that I felt. [Side note: because of all the bleeding that had been going on, I had developed acute anemia - my Hemoglobin had dropped to 7 - and had to undergo a series of four 4-hour-long iron infusions as a result. One thing leads to another!]

My doctor started talking about treatment options, and about how our goal was to achieve remission. He was sweet and apologetic, and conveniently left out that about 75% of Crohn's patients have surgery at some point. I went home with a bunch of brochures on my treatment options and another appointment scheduled for the beginning of February, when I would have to make the decision.

We [me, Alex, my doctor, and his nurse] decided to go with the middle-of-the-road treatment, Humira, a biomedic. It's a subcutaneous injection that I give myself once every other week. No biggie (even though it sure is hard to push that button to inject myself!). The downside of biomedics is that they basically shut your immune system down, since that is essentially what is attacking your GI tract. So that means you are susceptible to diseases and sicknesses like whoa. And you are at a greater risk of serious illness, like lymphoma. But hey - every medicine has risks these days.

I am also trying to figure out the foods that negatively affect me, since every Crohn's patient is different. So far, I have identified two things that I need to steer clear of: red wine (sadly) and anything that is high in fiber. Usually, high-fiber foods are good for the digestive tract, but for me, it accelerates digestion and causes all my symptoms to flare. When I discovered this, I realized why I started feeling so bad back in May of last year: I was basically on a super high-fiber diet, with all the oatmeal, apples, and broccoli I was eating! And now it all makes sense.

Since December, I have been careful to stay away from red wine and foods that are high in fiber. And I have now been on Humira for about 8 weeks. I can honestly say that I feel better. I am starting to taper off a few of the other meds I'm taking, with the hope that I can eliminate some or all of those eventually. I think I am heading toward remission. I sure hope so. 

My biggest fears about Crohn's? That I will have to have surgery one day. That I will have a flare during a big vacation. That I will feel miserable when I am pregnant. That I will be a slave to Humira (or whatever other drug) forever.

But it could be a thousand times worse. I am so thankful that this disease it treatable and not life-threatening. 

I hope this has shed some light on the yuckiness of this invisible disease. If you have had any of those symptoms, it is worth a trip to the doc to check it out. I wish I had figured it out sooner.

And seriously: a colonoscopy is not that bad.

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