9/11

September 11th is a very reflective day for many of people. It will always go down as one of the most memorable days in history in many people's lives. While I personally don't know of anyone who died on September 11, 2001, there seems to be an unfortunate game of six degrees of separation. As I looked through the Facebook posts today, it seems that quite a few people on my friend's list knew someone who died or  who was effected by this very somber day.

I woke up on 9/11/01 sore and uncomfortable, popped a pain pill, turned on the TV and got back into bed. It was a little after 9am and I was on medical leave from work. Several weeks before my life had changed forever. I was admitted to the hospital and didn't leave until my colon and rectum were removed, two weeks later.  I was given an ileostomy. A bag. I was different than anyone I knew.

The discomfort I was feeling on that day is nothing in comparison to the mental anguish and physical Hell that many, many people would endure. The images on the news were terrifying. I couldn't imagine what was going through the minds of those in the twin towers trying to escape, those on the airplane that crashed into the Pentagon. Watching the Today Show, my pain went away. Instead I felt angry and sad as I tried to grasp what was happening to our country.

Seven years later, after several months of fistulas, abscesses (is that really the plural for abscess?), intestinal narrowings and other Crohn's fun, I was scheduled to have surgery on September 11, 2008. I almost didn't schedule surgery that day, because of the horrible events that happened in 2001. I felt it was a jinx. I decided that my thought process was ridiculous, so I scheduled surgery.

I don't remember much about that September 11th, aside from waking up and being told that I needed a blood transfusion. That and the horrendous pain. I also remember feeling fortunate enough to have my loved ones surrounding me.

I couldn't imagine going through the awful events of 9/11/01 alone, without family or loved ones surrounding me, thinking that this could be my last moment. Many of us go through trying times in our lives and want to give up. Just know that the feeling is temporary. No feeling is permanent. It does get better.

Blueberries & Strictures

I love fruit and loathe Crohn's disease at times. Take blueberries, for instance. I went to the grocery store and picked up some fruit. No, not to eat. I can't eat fruit. To blend in my Vitamix. I get home, wash the blueberries and start to eat them, as if it's "safe". Not so fast!! I quickly spit out them out. I can't eat those, I think, and mildly freak out to the thought that I may have some stomach issues later.
I proceed to blend my blueberries, strawberries, apple and banana.

How many people have to think about every single thing that goes into their mouth? Aside from those (myself included) who count points, fat grams and calories. Many Crohn's, Colitis and IBD sufferers know this problem all too well- strictures.

An intestinal stricture is inflammation that has caused scarring of the intestines. Ultimately, a stricture can get so narrow that a fistula is formed (that's a whole other ball game). I have had my fair share of strictures and fistulas. Three times  they have lead to major surgery. First was my proctocolecotmy in 2001, next came the bowel resection in 2004, followed by a new stoma and bowel resection in 2008.

Back to food. My list of DO NOT eat is longer than my list of foods I can eat. I avoid roughage, unless for some reason I think I'm a "normal" person at that moment. As a general rule, I don't eat vegetables, unless they are pureed, a la baby food style. I do eat tomatoes on occasion, if I'm feeling really well and have had a lot of liquids that day. So how do I get nutrients? See below!

Breakfast: 2 Low fat Nutragrain waffles with 2 TBS of PB2 Powdered Peanut Butter and decaf iced  
                 coffee. If I go to the gym before work, I add a protein shake into the mix too.

Morning Snack: Low fat Sharp Cheddar String Cheese

Lunch: High protein pasta with spinach pesto (pulverized in the food processor) with grilled chicken
            with a sprinkling of low fat cheese.

Afternoon Snack: A Zone protein bar. I go to the gym every night, so this is perfect pre-workout.

Dinner: Grilled chicken or turkey sausage with rice, pasta, or a tortilla, with sun-dried tomato pesto or  
             spinach pesto, sprinkled with Parmesan.

Dessert: A whole fruit smoothie made with bananas, strawberries, blueberries, cherries, apples, grapes,
             peaches, or whatever I have in the fridge or freezer.


Sometimes when I go out to eat and order a meal, asking the waitress to remove all of the roughage, I think "do people think I am not a healthy eater"? I am an avid gym goer and love to eat healthy foods, when I am healthy. How many people understand that veggies and fruit could be bad for you? It's a foreign concept. The way I eat is healthy for ME. Is it a bummer that some of us Crohnnies have to watch every single thing that goes into our mouths? YES. Is it worth it to avoid surgery? Absolutely.

All In The Family....

Anyone else out there have a rich family history of IBD? If you haven't, meet mine. The legacy probably began many many moons ago in a far away land. Some families pass down quilts, jewelry, coins. My family passed down IBD. 

Let's start with my grandpa Marvin. My father's father. Though I never met him, our bowels have brought us together. To my knowledge he was never diagnosed with Colitis, Crohn's or IBD, but he did have bowel surgery at some point in his short life. Marvin passed his stomach woes onto three of his four children, my dad being one of them. My dad in turn passed it down to me and my brother, Mark. Only one of my aunts passed it down to one of my cousins. So how is it that both Mark and I have Crohn's disease? Pure luck. 

I'm not upset with my genes. Every family has something. Nobody gets through life unscathed. We could have it worse. Whenever I'm feeling sick, or not quite right (like right now), I think of how fortunate I am to have a wonderful, supportive family. I have parents who would do anything for me. I have a husband who picks up on all of my signals and knows when I don't feel well, even if I don't want to admit it. Who was by my side through my colectomy in 2001? My dad. Two weeks in the hospital. The only time he went home was to pick up my mom to bring her to visit me (and hopefully to shower).  I know my dad wishes he could have taken my place. I wouldn't want him to though. My ostomy makes me me. My scars are my battle wounds. They represent my cause. 

I was diagnosed with Crohn's when I was 9. It took countless tests, upper GI, lower GI, colonoscopy, you name it. I never wanted that for my brother, but several years later, he was diagnosed with Crohn's too. I felt for him. I knew what it was like. It's pretty torturous to take Prednisone as an adolescent. You think your pre-teen years were hard? Try being a puffy fat Prednisone child. There's one way to ruin your body image for life. Fast forward to 2010. My brother calls me. He's in extreme pain. I know what's going on. He is having a major flare. He goes to the ER and is told it's probably appendicitis. I know better. One year later, he's having a bowel resection. I wasn't able to be there, because he lives several hours away by plane. I knew what he was going through but couldn't be there for him. I knew what his recovery was going to be like. I knew how he felt when he woke up from surgery, I knew how frightening it was for him to be out of control. Thankfully he's doing great!

People often wish they could trade lives for someone else's. Not this woman. My life has been a little challenging at times, but how do I know someone else's isn't harder? I'll take what my family has given me. 

Sleep.

Is sleep important to you? It should be and it should be more important to me than it is.

Sleep helps you live longer, is good for your memory, helps your attention span and helps you maintain a healthy weight. So why is it that I just can't seem to find enough time for something that helps ward off depression and lowers stress?

As a child, my parents emphasized the importance of sleep and rest. Because I followed their rules, I was generally a well rested child and teen. As an adult, I often find that a cat nap before the gym a couple evenings a week gets me through a long evening of working out and doing household duties, such as the dreaded laundry and cleaning the house. So why is it that I can't get to bed early enough so that I don't need these twice weekly naps?

I'll tell you why- I don't want to miss a thing. It seems quite childish, but I like the night owl self that I am. My husband works the late shift, and we see very little of one and other. If I stay up later, I can talk to him a little more throughout the night. Staying up also gives me the extra time to mindlessly surf the net, Facebook and Twitter. So is it worth giving up my sleep to do these things? Probably not. My body will thank me come Monday, when I will make my first real attempt to go to bed early tomorrow night. And if what I said is true, that more sleep leads to a healthier person, my Crohn's will thank me too.

I've Got Food Issues.

There. I said it. I have food issues.

At every point in my life I've had issues with food. In high school I was afraid of eating anything with fat in it. I ate a fat free bagel with fat free cream cheese, pretzels and a diet Pepsi for lunch every day. Healthy? I think not. I would make dinner every night just to make sure there was no added fat. I would buy 93% lean ground turkey and make tacos with fat free cheese and fat free tortillas. Spaghetti was made the same way. Oil in the pan was a no no. I'd eat lots of salad with fat free dressing. Snackwell cookies. You name it.

When I was in college my eating habits remained the same, until sophomore year, when I had a really bad flare up. More food issues to deal with. I had to cut out all fiber, leafy greens and anything hard to digest. I couldn't drink milk, eat cheese. Basically, my diet consisted of bananas, bread and well, bread.
After my colectomy, at 22, things improved. I started to introduce veggies, fruits, anything natural and healthy. I even ate tofu! I felt great. I thought my food woes were over. Not so fast.

Again, at 23 I started having more issues, well the same issues I had as a young college student. Another surgery later, I'm back to being better than ever. But when's this pattern ever going to end? I won't bore you with more details of hospitalizations, surgeries, etc. The pattern will continue as long as I have Crohn's-- and I'm okay with that.

At 33, I have now realized how to eat for my bad gut (it took long enough for this stubborn gal to discover this). I tried SCD, gluten free, wheat free, dairy free. No luck. Wanna know my secret? Eliminating ALL roughage. Oh it's painful to do, but it's even more painful to eat a delicous salad, steamed veggies, fresh veggies, anything that doesn't disolve in water, basically! Instead of eating those delicacies, I bought a Vitamix and blend them. I make veggie based sauces, smoothies, shakes, anything that can be blended, really. I do miss my salads, fresh veggies and fruits, but I'd do ANYTHING to avoid another operating room table, so I'll stick with what works!

Here's a link to my favorite recipe:

http://thelemonbowl.com/2011/05/grilled-chicken-breasts-with-spinach-pesto.html

Pump it Up!

Four years ago I was too sick to even eat. It was painful, made me feel sick and was unenjoyable. I knew eating junk wouldn't make me gain weight, because I was struggling to stay at my weight at the time. I wasn't upset about losing weight, but I knew this was a bad sign. There isn't anything I wouldn't do to loose weight under normal circumstances.

Fast forward to January, 2012, New Years Day. I spend it all in bed, curled up in a ball, throwing up, in pain. Brad took me to the ER around 7pm, and hours later I was in a drug haze, then sent home. A couple days later the same thing happens and I make another trip to the ER. This time I'm admitted. I barely remember anything, aside from the wonderful visitors I had. I also remember the moment I started Prednisone. The evil drug I had been on during several others flare ups in my life. Prednisone made my pre pubescent years hell on earth. Not only did I feel like a blimp, but it made me angry, tired, wired, just plain awful. As a child you really don't understand what is going on inside your brain. You just know something feels off. As the doctor tells me that I need to start 40mg of Prednisone, I panic on the inside. I know I need it to ward off the inflammation, but my arch nemesis, weight gain, is about to resurface.

I'm only in the hospital for a couple days until they discharge me. I'm not suppose to eat "food" for a couple days. Sure, tell that to a girl who hasn't eaten in days, is taking Prednisone and watches the Food Network all the time. I go home looking fat. Bloated. Gross. I know what's ahead of me. I instantly feel like my 9 year old self. How do I combat this feeling? WORKOUT!

I start out with an easy 20 minutes on the elliptical at home. Nothing too strenuous. I watch DVR'd shows and the time passes quickly. I am a little too self conscious to go back to the gym. I look like I've gained 20lbs in the course of two weeks. I check my weight daily. The task isn't to loose weight, but to maintain. It's REALLY hard to loose weight on pred. I literally had to lock myself in the bedroom at night so I wouldn't eat everything in the cabinets and fridge. Rice cakes became my BFF because I wasn't able to eat much of anything, due to the narrowing in my intestines. They are also really low in calories. I see my GI and his first words were sweetly "Oh Rachel, you look puffy". Thanks, doc. Love you too. Honestly, he's great- really sweet. I tell him I have been exercising, have a gym membership, but am not going. It suddenly hits me. Why am I paying for a gym membership if I'm not going to use it?

Later that week I go to my best friend's gym to try Zumba. I'm in love. It's like an adult dance class where you can look stupid and it's okay, because so does everyone else! I get the courage to try Zumba at my gym the next week. I'm not just in love. I'm head over heels! My instructor is inspiring. This isn't your average Zumba class. This is booty shaking bootcamp Zumba. I start going 3 times a week and start seeing some results. I drop a few pounds and my waist starts to get a little smaller. I feel like a teenager on stage performing for an audience. The feeling breaths new life into me.

I've been off of prednisone for a few months and now attend Zumba at least 6 times per week. If I don't I'm cranky. It's the biggest stress reliever I've found. I have also added Body Pump to my repertoire, at least twice a week.  I've always had somewhat toned legs, but seeing the results in my arms in just a few short weeks is a pretty good feeling.

Exercise is my addiction. There are worse things, I suppose. Better get to bed so I can hit the gym early!

xo

It's The Little Things...

My dad has always told me that its the little things in life that matter. Maybe that's what has helped me get through my 3 major surgeries and too many smaller surgeries (6, 8?) to count. Knowing that I still had air to breathe, people who care and my little doggies at home have gotten me through a lot. The funny thing is that I generally don't see myself as someone who has gone through a lot. I know there are people who are worse off than I. When I'm down, I always remind myself of my surroundings- my husband, step children, parents, brother, my house, and everything else that gives me comfort.

I started Imuran last week. The side effects on top of those of Humira freaked me out enough into starting a new life insurance policy. Tonight the life insurance company called me to take my health history. The woman said it should only take 15-20 minutes. Haha was she in for a surprise. An hour later, she was telling me how inspirational I was. She couldn't believe my spirit wasn't broken after all I'd been through with Crohn's. Especially since I was diagnosed as a child. She told me I was her inspiration. She thanked me for changing her outlook on life. That made my week!! I'm sure she talks to people all day long, every day, who have ailments or diseases. Anyhow, it's amazing how a mere compliment changed my day and week. It's the little things after all, that make our world go round.