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! 

The Dark Side of My Digestive System

Flashback to October 2018: As a 23 year old, newly married, freshly out of college, and in my first big girl job as a wedding coordinator, I was stressed beyond belief. Jordan was gone a majority of the month for work and I was ass kissing MOBs 24/7. October in particular was the month from hell. Apparently, the month of October is a magical Disney time where not only do the leaves change colors but women change their last name. 

I thought I knew what stress was – then adulthood/marriage paired with an overwhelming vocation hit me like a ton of bricks. 

That’s when the symptoms started. I remember the specific moment when it hit. I had just arrived at the wedding venue. A stereotypical rustic barn with “All of Me” by John Legend blaring through the rudimentary sound system. A wave of fatigue and severe indigestion hit. A chronic burning in my stomach, cramping, and occasional diarrhea began to plague my life from that moment on. My first visit to the doctor went as you would imagine: 

“Nothing is wrong with you. Take this proton-pump inhibitor and have a nice day.” 

Now I can’t fully blame the first series of doctors. Crohn’s is an elusive beast and it does not run in my family so I can see why they wouldn’t cast their flashlights in that direction. But regardless, I was disappointed and full of unanswered questions. 

The end of 2018 marked the beginning of an uphill battle against a menacing Phantom. 

It’s now early 2019 and my primary care physician ultimately  referred me to a Gastroenterologist. This is a doctor you regularly meet when you are 50. I was 24. At this point, a lot of my symptoms were still upper: burning and pain above my belly button.

In April 2019 I had an endoscopy done (where they take a small camera down in my stomach and look around. Personally, I think it’s a cool procedure, my husband tends to gag upon thinking about it. Pun intended). At this point, I was hoping for an ulcer – ulcers were hereditary and it would at least be a face to the menace torturing my digestive system.  We even entertained celiac disease as a possibility.

Nothing showed up and the tests for celiac came back negative. All that was reported was gastritis and excess fluid in my stomach and my doctor insisted I stay on my proton pump inhibitor. I was gutted…both literally and figuratively. Seriously? In hindsight – I should have pressed the GI doctor. What was causing the inflammation in my stomach lining? Why was the fluid there? In hindsight, the excess fluid would point to my body compensating for an issue that didn’t exist. This could have been a clue to auto-immune. Hindsight. Life is made up of hindsight. There is no escaping it. 

Sadly it took several more months to get to that point in my health journey – where I had the courage to start asking the deeper questions – the courage to face darker realities.

A bit disgruntled with my current health care and lack of results, a close friend referred me to her doctor in July 2019. She described her as more holistic but extremely effective. At that point, I was desperate for ANYTHING. After meeting with Dr. Holly, I was instantly encouraged. She requested blood and stool tests immediately to see what was going on in my digestive glass menagerie. 

The test results were alarming. The inflammation levels in my blood should have given me a heart attack. I had an iron deficiency and was also lacking several vitamins and minerals. She was shocked I was still functioning. I had lost an incredible amount of weight and looked every bit the definition of gaunt. Oh! And my poop was nothing to write home about.  It was nine straight months of Niagra Falls out my butt. Sorry, not sorry. You clicked on this blog. 

I think the most damaging moment in this journey up to this point was the lack of concern and initiative from my GI doctors. This apathy dissuaded me from the conclusion that I was experiencing an irritable bowel disease like Crohn’s. Dr. Holly suggested a colonoscopy in order to diagnose Crohn’s or ulcerative colitis. 

She got me started on anti-inflammatory supplements like Fish Oil, Vitamin D and L-Glutamine to promote healing in my gut to see if that would fix my issues. This was also the first doctor who began to teach me the importance of diet and being aware of food sensitivities – something I am now really passionate about! A big reason why I am beginning this blog.

I must say, I did find the most relief from the supplements prescribed to me. As I began to follow an anti-inflammatory diet, I noticed energy and life returning. But even then, I knew my body was still at war. Looking back, I wish my doctors would have  pushed the colonoscopy from the very beginning. Looking back, I wish I had eaten more cake and macaroni and cheese before my body decided to join the dark side. 

In late Summer,  the symptoms still lingered. I also lost about 20 pounds since the beginning of the year. And at this point, my behind was at an all time flow. I will spare you the details – but chronic diarrhea makes your butt hole hate you. I felt like an 80 year old woman based on the pharmacy in our medicine cabinet. I still have the Monday through Sunday pill box that hypochondriacs carry around with them like a Kate Spade handbag. 

As September-October approached, I entered into another overwhelming work season and my stress levels sky-rocketed. As my stress increased, so did the pain and symptoms. The pain became unbearable. Looking back, I don’t know how I finished that season of work. There were moments while working events, I had to step away to compose myself because the pain was so severe. 

Oh, and I am so glad you brought up diarrhea! The diarrhea prevented me from doing ANYTHING. Trips to the bathroom were up to 10-15 times a day. My husband, family, and even Dr. Holly wanted me to quit my job. I am not one who quits easily. I knew I was leaving the job in November and moving out of state. If I could just get to mid-November, I could focus entirely on my body and health.

Now for the turning point of my journey, the clencher….clincher? 

My butt saved my life.

Bare with me! My bottom was in such extreme pain from the countless hours of diarrhea that I rushed an appointment with a rectal surgeon. It was the last appointment I was able to make before moving across the country.  It was this rectal surgeon that finally pushed for full Crohn’s investigation. She was alarmed by my symptoms and the current state of my behind. I finally received the urgency from a healthcare professional that I knew I needed deep down in my heart.  

She quickly scheduled a colonoscopy before my departure from the state. 

Now my colonoscopy story is an entirely different blog story, but I will just leave it as this: They stick a camera up your butt. To be continued.

I remember when I got the diagnosis. I was groggy from the procedure and I could feel the warmth of Jordan’s hand in mine. The doctor’s assistant walked in and dispensed with the pleasantries. “It is definitely Crohn’s.” A wave of sadness overcame me. I cried. The overwhelming sadness was quickly replaced with relief. Finally. An answer to my years worth of suffering. Finally, the face of the serial killer in the neighborhood of my digestive system.

If I have learned anything: when in doubt, get a colonoscopy! If I would have been tested sooner, it would have saved me from so much frustration and suffering.

Also, trust your gut. Despite the initial lack of concern from my physicians, I knew something wasn’t right. Press them. This is not a blog blaming physicians. Doctors work to save countless lives throughout their career. Days can get long. Sometimes they need gentle assertiveness from a patient that knows something isn’t right. 

In future blog posts, I will discuss in more detail the symptoms leading up to the diagnosis and the actual diagnosis itself: Crohn’s Disease. I would also love to share about how diseases affect your relationships and your caretakers. I will also be sharing more on how this disease has established a stronger connection with Jesus. Suffering, although horrible, can only produce good. The desire for this blog is to ultimately bring awareness to all facets surrounding an incurable disease. 

Thank you for reading. Please continue the conversation in the comment section. And don’t forget to share your story. 

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ,  through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. -Romans 5:1-5.