Saturday, January 16, 2016

My "Gut" Feeling...Celebrating the Absence of Crohn's

I'm writing this blog post on a very important day—the 12th anniversary of the surgery that saved my life from Crohn's disease. It's tough to know where to start, so in the interest of time, I'll give you the Reader’s Digest version.

I was diagnosed with Crohn’s Disease 2 years prior to my surgery, and 2 years prior to my diagnosis, I had contracted the H-Pylori bacteria while living in Ontario for a few years—I was 29. That bacteria is nasty—it burrows a hole in your stomach (ulcer) and it takes three sets of the heavy-duty antibiotics to kill it. Antibiotics killed it alright, and everything else in my gut. However, at the time, I was naive to how this all worked, and simply did as I was told by the doctors. The reason I mention this bacteria is that I believe this was the root of the cause of the Crohn’s (and my GI specialist concurred). My gut was wide open to any and all pathogens, and probiotics were not even mentioned as an after-treatment to replace all the lovely good bacteria that was obliterated alongside the bad.

Fast forward 2 years, and I’m now back in Vancouver and decide it’s time for a divorce. It was my doing to end the marriage—our daughter’s diagnosis of autism whilst in Ontario took a weak marriage and broke it. It was a very difficult time, our lives were in turmoil, and weren’t a happy pair. The stress was at an all time high, and back then, I had no idea how to manage it, nor did I seek out help—I just dealt with it. In the midst of all this, I started having stomach issues—first I just chalked it up to a bad meal or two. Then it turned into wanting to be sick within a few hours of eating, and then finally into actually being sick. It turned from a rarity, to once in awhile, to more often, and finally into a regular occurrence, with the diagnosis in amongst there somewhere.

Crohn’s is a inflammatory bowel disease that can arrive anywhere along the digestive system, starting at the mouth and ending, well, you know where. For me, the disease had taken hold in my small intestine, as determined by a test called a small-bowel follow through. It’s lovely—you drink a delicious cup of barium (not sure that stuff was meant for human consumption) to highlight the digestive tract for the x-ray machine. Parts of my small intestine where extremely inflamed, to the point where when I was at my worst (just before surgery), the damaged parts were the width of a piece of string (they are usually an inch in diameter).

The pain just kept getting worse and worse, to the point where I had planned special places on my commute home (West Vancouver to Steveston) where I could safely stop and keel over in pain in my car without alerting the public. My GI guy said they use a pain scale in the medical field, with childbirth being about a 5, and terminal cancer being 10. Based on my condition, I was at an 8. It was so horrific near the end, that I just wanted it all to go away. It was only for a fleeting moment that I felt that way—until I was able to get a grip and remember I had a beautiful daughter who needed me.

My GI guy had me on a few different anti-inflammatory medications, but the only one that worked was prednisone. I was in love with it—why? Because it took the pain away. I went on it three times within a year and a half—I was able to eat again, and without being sick. After round three, my GI guy finally said no more, and warned me that any more, and I would be getting hip-replacement surgery in 5 years time. The drug let me eat, but it was eating my bone marrow.

During this time, aside from severe hair loss and issues with my teeth from all the stomach acid, I had obviously lost a considerable amount of weight. I was a healthy size 10 and just kept moving down the scale. Initially, it was interesting because it was neat to be shrinking and buying smaller sizes, and my stupid boyfriend at the time thought it was great because I was really slim and looked fantastic (what idiot is happy his girlfriend has a chronic illness?). The defining moment came when I was in the American Eagle dressing room and tried on a size 4 pair of jeans and they were too big. The sales girl was all “Oh my god, that’s so awesome, I’ll go get you a size 2!”. And then I lost it—I had a full-on breakdown in the dressing room while waiting for my size 2 jeans. When you can’t control what your body is doing anymore, it is a sick and horrible feeling. I was beside myself and knew that something big was coming. It was called surgery.

Hearing the words, “Your body is shutting down, you will be dead in two weeks if we don’t get you into surgery” is terribly sobering. Death is something that was supposed to happen when I was old, not at 33 years of age. I was at the point now where I hadn’t eaten anything solid in over 3 months, and was even throwing up water.

I will yada yada over the surgery and all the details of time spent in the hospital—but when I woke up from my surgery, four and a half feet of my small intestine was removed in 3 different places. I no longer had a terminal ilium (where the small and large intestine meet) so I have to have B12 shot into my arm muscle every three weeks for the rest of my life (B12 is absorbed by the terminal ilium). But that is a small price to pay for being alive. When they brought me my first solid food while I was in the hospital, I just starred at the sandwich for 2 hours, afraid to eat it because it might be painful. The radiologist’s report cited that upon inspection of what was removed from me, he couldn’t believe I had survived. The surgeon did an amazing job—internally and externally (you can’t even see the 6 inch incision anymore). He tried to tell me I would be on medication for the rest of my life, and would be back in for more surgery in a 3 to 5 years, and I said no to both.

I haven’t taken a stitch of modern medicine since that day. I use peppermint oil on my forehead if I get a headache. I drink chamomile tea if I feel a bit of heartburn. I take probiotics religiously every day. I meditate every morning and every night and I am grateful every day that I am here. My diet and exercise program is improving all the time, and I have learned various stress-relieving techniques that I practice daily. I live in the moment as much as I can, and truly enjoy my life. I literally have nothing to complain about and I savour what this beautiful world, even in amongst the not-so-great situations, has to offer.

There is much, much more to my story by way of what I do to keep myself (and my gut) healthy, which will be saved for a further post. The important thing to me is, I have internalized the concept that I no longer have the disease, and I no longer identify with it. I have altered my destiny by denying that there is no cure. And I wish that empowered thinking for everyone.

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