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.

Other People Have Crohn's Too?!

I have spent the better part of my life hiding the fact that I have a disease, and my adult life hiding my ostomy. The denial started when I was diagnosed at age 9, and I've dealt with most issues by pushing them away. Not healthy. I can remember walking to school with my friend, in elementary school, and she said "My mom said you take medicine. How come?" My response- "No I don't. There's NOTHING wrong with me. I DO NOT take medicine. My parents tried to get me to join support groups for young children with IBD. I wouldn't even entertain the idea. Looking back I wish I had. Woulda shoulda coulda. There's nothing I would change about my life. I am who I am because of the events of my life.

The other day I was perusing the internet and stumbled upon an article about Secret Life Star, Kenny Bauman. He has Crohn's too! I'm not excited he has to suffer, but I love hearing about people in the limelight who have IBD. It brings attention to this very important cause.

Check it out!

Secret Life Star Battling Crohn's


Other celebs who have Crohn's:

ABC News correspondent Cynthia McFadden
American Pickers Frank Fritz
Pearl Jam's Mike McCready
Jacksonville Jaguars David Garrard
Mary Ann Mobley
Shannen Doherty
Dwight D. Eisenhower
Wrestler George "The Animal" Steele
NHL's Kevin Dineen

I Get By With a Little Help From My Friends

Several years ago Rebecca came into my life. She was promoted form receptionist to CSR/Insurance agent. If you ask me, her skills are WAY beyond receptionist level, but it was the only job this English major found, right out of college.  We became work friends, you know, small talk about life, work, etc. Then one day she became my best friend.

I hadn't been feeling well for months. I lost weight, couldn't eat, had fevers and no energy. I went to my family doctor several times and was told I had the crud that was going around. In the back of my mind I knew that wasn't true. I knew the signs. I wouldn't say I chose to ignore them, but if you know me,  you know that I lived in denial for most of my childhood. Fast forward to April 2008, a couple days before Brad's birthday. I called my GI, who was in Chicago, and told her about my symptoms: weight loss, fevers, lack of energy, but the kicker was the hard lump in my abdomen. She told me to go the ER and have a CT done. Brad was working, my parents lived out of state, so the only logical thing to do was to go by myself. Fine. No big deal. Rebecca, being the sweet, caring work friend she was, offered to go with me. I welcomed her offer. At 5pm we went over and waited in the ER for what seemed to be forever. Hours later I found out that I had an abscess the size of a softball in my abdomen, caused by a fistula. Joy. I knew what was next. Surgery. I remember driving home from the ER around 11pm and stopping at McDonalds for chicken fingers. I mean hell, I'm not going to be able to eat for a while, so let's live it up and eat shit.

The next day I talked to my GI (who I had seen since I was 18). She urged me to call my cool-rectal surgeon. I spent the better part of that Friday playing phone tag with the surgeon' office. My surgeon was on vacation. At 4:50pm my surgeon's partner called me back. I explained what was going on and he urged me to get seen ASAP. But who? I live in dinky Kalamazoo, Michigan. The reason I never switched doctors was because of the lack of specialized care in the area. Mind you, I was 28 and had lived in Michigan for about 10 years. He suggested I contact U of M, MSU, and the Ferguson Clinic in Grand Rapids, where he had done his training. I called all three and left messages. At 5:10pm I'm still at work trying to contact a surgeon. My boss and co-workers are hovered over me making sure I'm okay. As I'm getting into my car I take a phone call from Rebecca Hoedema, from the Ferguson Clinic, in Grand Rapids.

I'll spare you the details about my hour long ride to the ER, the  ER trip, the tears and phone calls to my parents flipping out. I loved Dr. Hoedema. She put me at ease instantly, but admitted me to the hospital to have the fluid drained from my abdomen. The problem was that Brad, who works nights, could't stay with me for the procedure. With my parents being 3 plus hours away, my work friend, Rebecca, offered to be with me for the procedure. At the time I didn't want to impose, but she insisted. I remember so little about that weekend, but I'll never forget how it felt to gain a close friend, and now best friend. As I was wheeled into the radiology department, I had Rebecca by my side.

The tech assisting with the procedure asked Rebecca who she was. She replied "Rachel's co-worker". The tech told Rebecca that she was not just a co-worker, she was a friend. I get chills thinking of how our friendship started. It was the beginning of something wonderful. I'm so lucky to have such a fabulous co-worker and best friend!! 

Reflections

Friday, September 10, 2010

Things that make you go HMMMM

Tomorrow is 9/11/10. What were you doing 9 years ago? I was recovering from my first ever major surgery. It was 9ish in the morning. I was just waking up from my legal drug coma. I turned the TV on to the Today show. Being as out of it as I was, I saw a plane go up in smoke and thought NOTHING of it. I'm sure it was the drugs. Something in my head didn't see anything wrong with this picture. I was a few weeks post op after a two week hospital stay. I didn't enjoy going out in public, I couldn't wear "real" clothes, drive or even get out of bed very easily. My ex-husband was next to me sleeping, I kept seeing images of that plane, so I turned the TV back on. OH MY! The World Trade Center was crumbling. Reporters were flocking to the scene, covered in ashes. It was a sight that you couldn't take your eyes off of, yet it hurt to look. Tragedy, a horrible terrible nightmare.

Fast forward seven years. Life is different. Not that the events of 9/11/01 had been forgotten, but the people who were effected by the tragic events had to learn how to continue living their lives. On 9/11/08 I had surgery scheduled. I was terrified. Was 9/11 a curse? At first I thought so, but decided to make the best of it, as I always try to do when I have surgery. I was having my ileostomy revised. It was being moved to the other side of my body, the lefthand side. My wonderful surgeon, Rebecca Hoedema, had so much confidence. I had been in and out of the hospital so many times that the nursing staff knew me pretty well. They brought me books from home to read. They came in just to chat with me and catch up. They knew Brad, all about my dogs, my likes and dislikes. They even knew me enough to sneak me chocolate milk & graham crackers when I was hungry at 3am. That early morning when I arrived at the hospital, I remember Kristen, my ET nurse came up and greeted me with a warm smile and a hug! She was amazing! She made me feel so calm. She drew on my abdomen so that Dr. Hoedema would know where to place my new stoma. She gave me a hug and was on her way. The anesthesiologist came over, asked me if I wanted an epidural. In all honesty I cannot remember if I decided to have one. I did tell him how awful the anesthesia makes me feel. I told him that it makes me vomit uncontrollably. He took note and told me he'd be sure to take care of me. I think Brad walked with me while I laid on the gurney, until he couldn't walk past the doors to the OR. That's all I remember. I don't remember recovery. The next thing I remember is waking up in my room, being told that I needed blood. Ewww. Have you ever seen a transfusion? Nothing more disturbing than watching blood being transfused into your body. I did feel TONS better once I had the blood. It breathed new life into my flailing body. I made it. I did catch a cold after surgery. I think Deb and Skylar were coming down with one and they were there by my side, which meant SO much to me. My parents, Amber and Brad all came to see me too. Mom and Dad rented a room in the hospital, like a mini hotel room as far as I am told. I made it though. I survived my very own 9/11.

A Post from the Past

Tuesday, July 7, 2009

Not So Independent Day....

Back when I was in college started working on my "life story", but what do you know about life when you are 20? I worked on story for months, and it actually turned into a mini book of sorts (if I could only find the disk). Sure, you go through lots of changes as a teenager, but my life has always been different than your average person's. When I was 8 years old became ill. It took months of night sweats, fevers, stomach aches and weight loss before finally being diagnosed with Crohn's Disease.

I remember the moment when I knew I was "different". I was 8 and my brother Mark was 4. I was on Spring Break in Long Boat Key, Florida and had a slight mishap... OK It was 3am, I was on the toilet and was screaming bloody murder because, well, I saw BLOOD. A whole toilet bowl of bright red blood. I was reassured that bright red blood was a "good" thing. What? Ya, I didn't really buy it either. Remember that moment, Mom & Dad? From then on, I turned into an angry child, to adolescent to teenager. Sometimes those inner demons even come out every now and then.

Months go on, I get my ears pierced, turn nine and go back to school after a summer of fevers and fright. It's picture day at school and of course I have my first appointment with Dr. Kirschner, my new gastroenterologist. My class said they would wait until the end of the day to see if I could make in back in time for pictures. Unfortunately I missed out on the fun at school. Oh boy, did I have a fun day of my own! Who wouldn't want a hose up their ass and IV's in each of their hands?! At least by the end of the day I had a diagnosis and medication. We also discovered that my doctor went to med school with my uncle and actually remembered my mom as a teenager! Small world. It gave comfort to a scary situation.

Fast forward to age 16. My mom and I go for my annual checkup with a new doctor. He's a gastroenterologist, so I trust him, I have no reason not to. He tells us that because I haven't had many problems with my disease that the remainder of my life should continue without incident. OH BOY was he wrong! I don't think I have time to get into it all now...I'll get there.

So, as I celebrated Independence day yesterday, I was tortured with thoughts of trips to the emergency room, multiple hospitalizations and past surgeries. July 4, 2008, technically July 5th, my husband had to rush me to the ER, but only after he lit off fireworks for everyone (that was my request). I knew something was wrong right before dinner, but didn't want to ruin things for everyone. I had our family and friends over. Of course I didn't want my stomach to get in the way. Plus, I knew that they wouldn't let me eat in the hospital... and for those who know me, eating is one of my favorite things! It slowly became my least favorite pastime. It was so painful that I was barely able to digest ice cream.

As I sit here at my computer, I'm still a bit pained by the memories of last summer. I know my situation is totally different that last year... I have fantastic doctors, a wonderful family and friends and had surgery last September that "fixed" my ongoing problems......FOR NOW. I live in constant fear that one day I will wake up and feel as bad as I did as an 8 year old. I've experienced this three times since then. I just need to learn to take one day at a time... XO

A New Me

Hi Everyone! 

I've wanted to start a regular blog at several different points in my life, but it's never felt right. I would post here and there, but never really commit. There are no excuses this time around. It's sometimes hard to write about illness, because it's a constant reminder of the past. I think I'm ready for it though.

I have recently been inspired to start blogging again, because of a website I found:  http://fullfrontalostomy.com/ Charis Kirk, who is the creator, is inspiring. Beyond inspiring. She has opened up a platform for people with IBD to find loads of information. Since I've been reading her blog, following her on Facebook and posting questions on her Facebook page for the past couple of weeks, I've felt the urge to start a blog myself. 

My first posts are going to be previous entires from my journal. It's strange to read my thoughts form a couple years ago. I was in a different place. Going through a major illness kinds of numbs your heart at times. I'm not overly emotional from reading my entires, which is surprising. Crohn's has made me a little rough around the edges, stubborn and even hard to live with at times. Yes, I know it's hard to believe that I could be difficult to handle. 

xo Rachel