An Incurable Disease. “So Be It.” Now What?

I’ll never forget the feeling of waking up from my colonoscopy and receiving the news. I thought a camera up my butt sounded bad. Diagnosed with an incurable disease sounded even worse.

Even though it scared the living daylights out of me, receiving  the diagnosis gave me a wave of relief. Sure, I was just told that my digestive system joined the dark side, but I finally had answers to my chronic pain and hope towards healing. 

Getting diagnosed can be scary and a bit overwhelming. It is important to know what questions to ask your doctors and what the next steps are in the process. So where do we start?

Short term relief. Immediately my GI doctor prescribed a steroid called Prednisone. I was to take this medication in decreasing doses over an 8 week period. This “grenade” provided relief almost instantly. Steroids are commonly used to combat the inflammation caused by Crohn’s. However, they are discouraged as a long term medication due to various negative side effects.  Side effects can include insomnia, depression, weight gain and overall just feeling a bit weird. I am so thankful for what it has done for me, but I looked forward to moving on to something more substantial and effective long term.

Long term medication. What is the bridge between the prednisone and long term medication? Discuss this question with your GI doctor. I was diagnosed with moderate to severe Crohn’s and the medication Stelara was recommended. Now I have done my research and there are several medications out there to treat irritable bowel disease. Just turn on the TV and you are guaranteed at least one commercial promoting a Crohn’s medication. Stelara is one of the newer medications and has shown promising results. I’ve been told Crohn’s affects everyone differently – so the right medication may vary for you!

I must say, it was new to me how Stelara is administered. I had to receive an initial infusion (yes, it involved a scary needle and IV in my arm over a 3 hour period). This infusion is similar to that of a cancer patient receiving chemo. After the initial infusion, I will need to be given injections once every 8 weeks. I will never complain about horse pills again. I would rather take a pill every day than give myself an injection.

Diet. Diet. Diet. I can’t stress this enough as it’s really important, not only to people with IBDs, but the public in general!  Dieting is one of the hardest aspects of this disease for me. Kraft Mac and cheese and ramen noodles are my JAM! Crohn’s has altered the way foods affect me. Sadly, gluten can no longer be a part of my life as it triggers my symptoms.

Thank GOD I like gluten free pasta!

It’s vital to start tracking what you eat and discovering what foods to include or what foods to avoid. Starting a food diary can be helpful (yes, it feels like a pain at times – but so worth it!). I’ve learned so much about inflammatory diets and Crohn’s super foods from my own research. No matter what you read out there, keep in mind that everyone is different. This is where monitoring your symptoms up to 72 hours after eating is so important. Gluten doesn’t upset my stomach right away, but you can bet that I will be enjoying the next day at the porcelain theme park. What are your trigger foods?

Supplements! Damaged intestines prevent your body from properly absorbing vital vitamins and nutrients. Prior to my colonoscopy, I had blood work done. The lab results revealed my inflammation levels as well as deficiencies. I was lacking vitamin D and B12. I was also suffering from a bout of iron deficiency anemia. There are even supplements that strategically combat inflammation such as fish oil. Talk to your doctor to see what they recommend as well as the best place to purchase your supplements. I won’t get into the quality of a supplement, I will merely suggest that you extensively read the reviews of supplements before buying. 

To stress or not to stress? Evaluate stressors in your life. This was huge for me. Stress from my vocation greatly altered my well being. I wish I could begin to understand the complexities of the gut and its connection to the brain, but all I can tell you is that the connection is real. Now, you may not be able to quit your job and move to a rural area like I did (talk about a major life change!), but removing those stressors have been life saving. As I seek a new career path, I will be committing to the limits and boundaries of my body. If a career change isn’t in the cards for you, I strongly recommend evaluating your priorities and finding ways to cope with stress in a way that promotes healthy living. 

AVENGERS ASSEMBLE.  It is time to call in the squad.  Having a support team as you navigate your illness and seek remission is huge. Yes, Crohn’s symptoms can be really embarrassing at times, but I’ve been pleasantly surprised by the encouragement I have received from opening up about my condition. I have met a lot of people who don’t mind talking about my bowel movements! Facebook groups, local support groups, church, etc. Encouragement is key. Having a chronic illness comes with good days and bad days. Reach out to people on those good and bad days.

Probably the biggest hurdle for Jordan and I was trying to understand my chronic fatigue. I always felt like crap. Along with severe pain during my flare-ups (The pain literally feels like someone stabbing you in the gut), I also experience low energy and I never want to go out. In a flare-up, my biggest priority is staying near a toilet and napping to my heart’s content. Now imagine living with someone like that? Poor Jordan! However, having him empathize with me, and not get frustrated, was a salve to my wounded mental state. He’s also been helpful as I alter my diet. He willingly gave up his comfort foods and jumped on the same diet as me. Surrounded by accountability and encouragement got me through some dark days.  

Patience! When I was told it can take 12-24 MONTHS for the digestive tract to fully heal, I about flipped a table in frustration. Are you serious?!

I CAN’T WAIT THAT LONG!

Achieving remission is a work in progress. Be patient with your body. You will have really great days where you feel you can take on the world. Others…well, not so much.

In my case, I was undiagnosed with Crohn’s symptoms for over a year. In that time, my body ran a constant marathon it was not equipped for. It’s going to take more than a “30 day diet detox” for my body to recuperate from that year. I am slowly accepting this process because I am confident I am going to survive this. Give your medication time to work. Use this time to learn about your body and adopt a lifestyle that will help you maintain remission. And I promise, you will begin to see results! 

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