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.

pockets full of demons.

I've gone a bit stir crazy these past few days, and will be returning to work tomorrow, thank goodness. I am hoping to ease into things, and put in a half day, and see where it takes me.

I'm a terrible patient. Maybe it comes from my years of bed rest and recovery from my brain injury, or my italian stubbornness, but I do horribly when it comes to bed rest. Granted, there are days when I cannot leave bed due to pain, and weakness, but as soon as I can physically start walking, I'm up and moving. I find that the longer I sit, or lay around, the more I start to have issues with my mind. As I have mentioned previously, I have PTSD, OCD, anxiety and depression thrown in for fun. My little demons have played quite nicely the past few years, but love to come out from hiding as soon as I'm home alone, or inside too long. My demons hate distractions. As soon as I start working, moving around physically, just anything to keep busy, they go back into their hidey holes. It is such a childish analogy, but it's the best explanation I have.

I managed to take a half mile walk today, which sent the little demons running. I'm hoping that by slowly easing back into work, even if just for a few hours, they retreat further into their caves. I must promise myself not to over do it though, and will listen to my body (not my little demons). I'll let y'all  know how it goes.

day four

Well it's already been four days since my surgery. I look and feel about seven months pregnant at this point- my stomach/abdomen is so swollen and bruised. I think I went into this being a bit too optimistic. Granted, it could have gone worse, but I didn't fully expect to be this sore, swollen and out of it.

I really don't know how the surgery went or how things looked, because I don't remember talking to my surgeon after it. My mom briefly spoke to her, but also doesn't remember, so I have to just wait and see what she has to say at my follow up appointment. I do know that I have two extra incisions (most laparoscopic gallbladder surgery involves 4 incisions, and I have six).

I am also quite anxious to hear the results of my liver biopsies, but again I just have to be patient and wait. In the meantime, I will nap.

Work/Life/Crohn's Balance

I love my job. I have found not only work that I am passionate about, but an amazing group of coworkers. I have found a job that is flexible, understanding and accepting.

In previous workplaces, I've had issues with missing time due to illness, countless doctor's visits and well inability to work. In the US, our sick time/leave system (for the most part), blows. Unless you are severely incapacitated or permanently disabled, there are few safety mechanisms, and legal safeguards for those with temporary illnesses, injuries or disabilities that are not lifestanding. After trials and tribulations of the legal system with my traumatic brain injury, I learned that in the US, there is often this grey abyss between becoming dependent on lifelong SSI benefits, and being a healthy fully functional employee. For those illnesses which are "invisible" this grey abyss turns into fifty shades of grey abyss, mountains and plateaus.

Crohn's Disease, and UC are not straight forward in any logical manner. Every single person is affected differently, in terms of ability, capability and "dis"ability. Just in the year of being diagnosed with Crohn's, I have developed gallbladder and liver disease. Does every indivual with Crohn's  develop these issues? Absolutely not. While there are more common complications, Crohn's, as well as UC are both far from being understood from a biologic sense. With Crohn's, there are some general complications, but so little is unterstood to make vast generalizations when it comes to long term, typical sequelae.

Still with me? At this point, complicated should be my middle name...

I'll use myself as a perfect example. I'm 25, single and female. I have a history of a traumatic brain injury, and do qualify for reasonable workplace accommodations (as I did through out school), such as fancy computer screens due to my vision issues, extended time for testing, ergonomic chairs, and adaptive equipment for my neuromuscular issues (at this time, in my current job, I have taken advantage of none of the above). I developed Crohn's a few years ago. Crohn's, like traumatic brain injuries, is too protected by the ADA act, for it is a physical impairment of the digestive system, and can impair one or more major life activities. That's fannnnntastic. But what does it mean in terms of reasonable accomendations? Close access to a restroom? The possibility to telecommute?

Keep in mind that ADA is only valid in those workplaces with 15 or greater employees.

I work for the state government, which has thousands of employees, and am also supported by a vocal union. Two years ago, in order to support myself, I found work waitressing at a small family owned restaurant. My employer did not provide sick time. My employer did not provide health benefits, and how on earth how was I to telecommute to waitressing, at a workplace not required to comply with the ADA. At the time, I was searching for other jobs, but was struggling due to the economy, my limited job skills, and unfinished degree. Was I able to work most days? Absolutely. Those days that I did miss to illness though, were uncompensated and I was lectured numerous times of missing too much work.

This is real life. I'm extremely grateful I am at a job, with unlimited sick days, 22 paid medical leave days, and 22 paid vacation days per year. This is a miracle in itself. For the other 1.4 million Americans living with Crohn's disease, this is not a reality. For a time I toyed with the idea of looking into SSI. I could not support myself with work, yet as many of those with Crohn's, knew I could work given the right accommodations and support. Unfortunately, I am an oddity. I have found a loving, nurturing workplace that will help, but my heart breaks for those who struggle daily with providing for themselves, and their families. The "system" is so disheartening.

Slice and Dice

Finally have a date for surgery.. It looks like I will be cut open April 16th (11 days). I do have to go for more pre-op testing, including bloodwork, X-rays and an ultrasound, so the date may change. One of the biggest issues thus far is that my GI, whom I love, is located about an hour and forty five minutes away (close to my parents house). My sister(who has GI issues) also seems the same doc which is one of the reasons I have yet to change. Also, my doc has a major Crohn's and Colitis research center attached to his practice, which is the most important reason why I have not left his practice yet. With Crohn's, it is so incredibly important to have a physician whom is interested in research, and that stays up to date. Considering I have only had the disease for about two years, and am on the last medicinal treatment option available, I need someone who is involved with clinical trials and new procedures.

This is going to be my first major surgery, associated with Crohn's. There is a lovely "fact" or statement from the CCFA that states that up to 75% of those with Crohn's will require surgery. Though this exact surgery is not on my bowels/intestines, I would not be needing this surgery if I didn't have Crohn's.

I will be saying goodbye to my gallbladder and some of my liver.. Typically this is all done laparoscopically but my surgeon feels that she will most likely do it through an open surgery due to an increased risk of bowel perforation.