160.
That is what my scale read this morning. At 5’7, this weight makes my BMI 25, falling just into the overweight category. At 159 pounds, I will fall into the “healthy” category.
When I tell people I have Crohn’s, one of the most stinging questions/comments has been “I thought people with Crohn’s are skinny, or don’t have issues with weight”.
This may be one of the most common misconceptions about this disease. For many of us with Crohn’s our weights change just as frequently as we move our bowels (couldn’t resist a great poo analogy). Many of us get deathly ill, and struggle to maintain a normal weight. Then we get put on steroids, which cause us to balloon up, gaining more weight than we could ever imagine. It is a miserable, desperate cycle. The rapid weight gains and losses along with the nasty side effects of these medications destroy or bones and our bodies, almost as much as the disease itself.
Throughout high school and undergrad, I maintained at a healthy 138-140 pounds. I was at the peak of my athletic shape, due to a new found love of long distance running, but also ate like a madwoman. Even when I stopped running, my metabolism kept up and had no issues with weight gain. I never experienced the freshman 15, or even the freshman 5, and have fantastic genetics. Fast forward a year later to my initial diagnosis. Within 3 months I had dropped from 140 pounds to 115 (underweight according to Mr. BMI). I was struggling to make it through the day, with no energy, and complete malnutrition. It wasn’t until this point did my doctors take me seriously, and start to question if my initial diagnosis of IBS was correct. 25 pounds… no big deal right?
Within 6 months to a year (I cannot remember the exact timeline at this point), I was started on steroids. They worked fantastically. I soon was regaining weight and could function like a semi normal human being again. Except, I couldn’t stop gaining weight. My weight eventually ballooned up to 188 pounds. Within a year to two year time frame, I had gained 73 pounds. Seventy three pounds.
Along with the weight gain, and side effects of the steroids my joints became brittle, and arthritic. I am so so happy that I had established a fantastic doctor/patient relationship, and took myself off the steroids with my doctor’s approval. I was in a weird place in my life, and was so frustrated with everything that once I safely tapered off my meds, I stopped seeing my physician. Maybe it was part of me not wanting to accept what this disease was doing to my body, maybe it was the frustration of the nasty side effects of every single medication used to treat Crohn’s, and not wanting to admit it to myself that I needed it. Either way, I parted ways with my physician, and went without seeing a GI doc for close to a year. I slowly lost the first fifteen pounds, in that year, and felt that I felt pretty darn good.
At the end of 2013, my symptoms came back with a vengeance. Knowing what I do now about the disease, I was fortunate to most likely be in remission during the time I was without medical care. Sadly to say that is no longer the case. This time around, with a new doctor, we went over a treatment plan. I adamantly refused to take any form of steroid, which my doctor respected. I had also developed severe inflammation and swelling of my liver, which is typically only worsened by steroids, which made the argument much easier. Pending scopes, I was to start Humira if my disease was active, which of course it was. My weight has been slowly dropping, which I am partly okay with. I also have had to deal with gallbladder issues and surgery, which has definitely wreaked havoc in my body. In six weeks we are going to re-evaluate, and go from there.
Part of me is a bit hesitant to lose more weight. Though I am not a hundred percent comfortable or confident in my own skin at this time, I feel that by holding onto an extra few pounds I will be safe if and when another flare up comes, or this one worsens. It is such f-ed up logic (excuse my language), but it is the absolute truth. By having more weight to lose, the less likely I will be to become underweight, or as severely malnourished as I was before. This way, I can lose twenty pounds and still be “healthy”.
Ideally, I would love to be 145. I have five weeks before I can resume physical activities and exercising which I am eager to start. I just don’t know where I want to draw the line. I know weight is only a number, and people all over social media are all about “non-scale victories” but much to my chagrin, doctors and health care professionals do not care about “non-scale victories”. They care about numbers, and the antiquated BMI charts. They care about pounds, ounces and kilograms. It is a battle I will never win, but I will do what makes me feel the best regardless of the numbers.
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