My Crohn’s Diagnosis Story (Part 2)

When I got back home again I did my best to hide my symptoms from my parents (vomiting episodes, lack of appetite etc.) but it wasn’t always easy to do and my mom would often get frustrated when I couldn’t finish my plate. Thankfully things got a little better that summer and fall when I started my MOA training and fell into a comfortable routine and I actually did quite well until the end of my time there when the nausea and cramping and trouble eating became more frequent again. At this point we had moved and didn’t have a family doctor so I just learned to live with the symptoms. My family was now use to me feeling “sick” the majority of the time, especially when I was stressed.
Over the next few years things would continue to decline to the point where my mom began to suspect an eating disorder and we would fight when I couldn’t finish my plate. By the summer of 2016 I was having all day nausea, diarrhea, bloating and pain and calling in sick to work more frequently. My bloodwork for my endocrinologist also showed low albumin from the malnutrition and after some online research I emailed her about the possibility that I had Crohn’s. However she dismissed my low albumin and weight loss as no big deal (I was now about 90 lbs compared to my usual 105) and told me I might be lactose intolerant and to take lactase. I tried this but still did not find relief. By this point I was ready to give up and face a life of chronic pain and inability to enjoy food.

In the fall of 2016 my symptoms changed and alternated between terrible diarrhea in which everything would run through me the way it went in (thankfully I never had much blood if at all) to painful lower back pain and constipation and reached such a point that I finally reached out to my family doctor in Ladner. I would work an eight hour shift at Jim Pattison in Surrey, hop on the Skytrain and then take the long bus from Scott Road to Ladner Exchange. Because it was usually suppertime I would pick up chicken nuggets and fries at McDonalds (the closest thing to my doctors office and the worst possible thing for me at this point but also one of the few things I could get down without feeling like vomiting- at that time vegetables and anything with fibre were the enemy) and then head to my appointment. I was usually exhausted by this point but also desperate for answers that I was willing to make the trek. By my third appointment my family doctor finally agreed with me that it was probably Crohn’s and scheduled me for a colonoscopy. I remember my consult with the surgeon and how he was concerned with my high heart rate (which I now know was a sign of sepsis) and was given there earliest scope date. Unfortunately I wouldn’t make it until then.

The weekend that I was diagnosed happened to be the weekend of my churches young adults retreat. My mom was worried about me going as I had been fighting a fever that wasn’t going away and vomiting more frequently but I was determined not to miss out and tried to hide my symptoms as best I could, assuring her that I was feeling better. That weekend I spent anytime that I wasn’t doing archery, horseback riding (yes I was horseback riding with a major flare) or any of the other camp activities, shivering and sweating in my sleeping bag from my fever. That Sunday after I got home, we were going to meet my brothers girlfriend for the first time. She made us dumplings and although I felt sick, I tried them. Eventually the pain and nausea became such that I excused myself to try and sleep it off. That never happened. By the time I got up for supper I was having such strong, contraction like pain and vomitting that I told my parents to take me to the hospital. So while my brother took his girlfriend (now wife) home, we headed to Eagle Ridge. Due to my high heart rate and blood pressure I was seen very quickly. I remember the relief from the nausea and pain meds and being taken down to the CT scanner and feeling unafraid for the first time. I was finally in the place where they could help me. Sure enough, the CT scan showed what looked to be extensive Crohn’s throughout my small and large intestine.  Things were so bad that I was riddled with absesses, infection (by this point I was in the early stages of sepsis), had a fistula, and was almost completely obstructed, though I would need a colonoscopy to confirm the diagnosis. I was started on iv fluids and antibiotics right away and told that I couldn’t have anything by mouth except some ice chips and then was progressed to a clear fluid diet and then full fluid. A few days later my colonoscopy was performed and the diagnosis confirmed. Prednisone was then added to the mix and I began to feel better and better. It felt great to finally eat again!

Once I could tolerate oral prednisone, I was released and came for my antibiotics as an outpatient.  By this point I was about 80-85 pounds and the goal was to increase my calorie intake and get me to a normal BMI.  However, this became difficult as I tapered off the prednisone and became intolerant to my antibiotic.  At one point I dropped as low as 75 pounds which is when, although my abscesses weren’t fully healed yet, they started me on immune suppressants azathioprine and Inflectra.  This was when I really started turning a corner and getting my appetite back and feeling like myself again, something I hadn’t felt in 7 years.

As I mentioned in Part 1, since then I’ve struggled with c-diff, psoriasis, obstruction, flare and med changes.  The current medication I’m on, Stelara, has finally started working and in combination with a paleo diet, has brought down the inflammation from this last flare (though its still not in normal range). This in turn has lessened the symptoms of narrowing from my strictured areas and I’m so grateful that I’ve avoided surgery so far and that my body has responded to meds as I know that some IBD sufferers don’t.  God is so good and as hard as this diagnosis and the lifestyle changes I’ve needed to make have been, it’s also matured my faith in ways that it wouldn’t have been otherwise.  That alone has made this crazy journey worth it.

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