Happy Easter!

I hope you and your family had a wonderful weekend! (For the record, our boys decided it was best to eat their chocolate bunnies by starting with the ears.)

 

My Diagnosis Story, Part III: Surgery

This is my third installment of the 4-part story of my diagnosis of Crohn’s disease in the spring of 2005. You can find the preceding parts here and here.

I got a crash course in Crohn’s disease only a week after receiving the results from my second abdominal CT scan. The ramp up of my symptoms was fast and furious, and I was sprung into a whirlwind of illness worse than any of my previous encounters with the Crohn’s monster.

My pain wasn’t abating like it had with past flare-ups – this time, it settled in and stayed. The pain and cramping became so unbearable over the course of one afternoon that I made an appointment with my regular doctor to see him immediately after work (I hadn’t yet seen my gastroenterologist for a consult). I was put on a liquid diet and given prescriptions for pain meds and antibiotics, which my husband, Chris, got filled for me – once I got home, I couldn’t even get out of the house.

The next morning, a Friday, I knew I would not make it to work. I optimistically attempted to get some work done remotely at home, but ended up back in bed. I tried to go to work the next Monday, but that proved to be a mistake.

By Wednesday, I had been home sick more days than I had been in the office in the past week, and things were only getting worse. I was unable to eat and even if I could, I wasn’t keeping anything down. The pain meds weren’t helping, either. I tried to shower, hoping it would ease my sore and distended abdomen, but fell to my hands and knees in the tub, retching from the nausea and crying from the pain. The shower didn’t work; the warm water brought little relief and certainly wasn’t enough to wash the pain away.

After my attempt at a shower, Chris took me to the ER.

Hospitalization #2

I still didn’t have much knowledge about Crohn’s disease or what to expect as I was admitted to the hospital for the second time in less than 40 days. IV’s brought welcome relief to my pain and dehydration, and after an abdominal x-ray (more radiation!), I was taken to a temporary room while I waited for a patient room to open upstairs.

On day 3, a PICC line was placed to provide nutrition - Total Parenteral Nutrition (TPN) - as I was malnourished and still only taking liquids by mouth due to the bowel obstruction I arrived with. Over the course of my stay, I would also receive vitamins and fat intravenously through my central line.

After the PICC line was placed, I was finally moved to room 407, bed 2 (I still remember the room number and view), a more “permanent” room. My first week in the hospital was dull, in which I slept a lot, took walks (with my IV pole, dubbed “Hal” by my Dad, in tow), and just tried to get better. Blood tests were done regularly, IV bags rotated, and a lot of TV was watched.

A colonoscopy (my first ever) was scheduled for day 8. The prep was awful, especially given that I was attached to Hal. But lucky me - I’d only been taking fluids, and the nurse brought in a commode so I could take care of business right there next to my bed! The procedure revealed a stricture so significant that my new friend, the gastroenterologist, could not get the scope into my small intestine. That hurt, literally. Even though I had received anesthetic, I groaned in pain as the doctor tried to navigate through my insides and she stopped to ask, “You can feel that?”

The biopsy of tissue samples taken during the scope also confirmed Crohn’s disease.

Surgery…

A surgeon was called in to consult on my case. Based on my CT and colonoscopy results, surgery was recommended.  I was warned that because of the amount of scar tissue built up in my intestine, future flares would likely land me back in the hospital; alternatively, for patients who have surgery, there is a very good chance that it will eventually be needed again. The decision was mine.

I was tired of the pain. I was tired of being curled up on the floor in middle of the night waiting for the cramps to disappear. Now that I knew what I was dealing with, I wanted a fresh start, and a better chance of finding my way to remission. I consented, and on Day 12, I underwent resection surgery, during which a foot of my small intestine was removed.

… and more waiting

Recovery wasn’t easy, but I was determined to get out of the hospital as quickly as possible. I would be discharged after I was walking on my own, my bowels “woke up,” and I was taking food again. Three days after surgery, I was given the go-ahead to try some crackers. I hadn’t had “food” in more than 2 weeks, and quite frankly – I was afraid of it. It took several minutes for me to finish that first cracker.

Still, the waiting was trying. I recall a volunteer who stopped by after I’d been hospitalized for a few weeks. I had woken up with a pretty strong resolve that day – focused on walking the halls and regaining my strength. He wanted to know how I was doing; how was I coping with being in the hospital for so long? “Two weeks is a long time,” he said gently. My heart sank. Somehow this sweet, kindly gentleman, with his well-meaning comment, made me see myself from the outside. And it took the wind out of my sails.

I’ll also never forget my first post-op shower free from Hal. The nurses wrapped plastic around my IV ports and taped them up to protect them from water. The shower room was down the hall, so I collected my things and off I went. It was the BEST. SHOWER. EVER. I felt human again! That is, until it was time to return to my room. I still wasn’t taking much food, and my body wasn’t used to being off TPN. The result? I fainted in the hallway. Superstar!

I wish I could admit that fainting was just a ploy for attention due to boredom, but it wasn’t. Someone caught me and got me to my bed, where two nurses checked my vitals and hooked me back up to those damn IVs.

On day 18 - Saturday, May 21 - I finally went home.

Gratitude

Being in the hospital for nearly three weeks in the spring can feel lonely. But I’m fortunate that most of the time I didn’t feel that way. I had my amazing husband, who came to the hospital every day I was there. He also brought up a portable DVD player and movies and would climb into bed alongside me so we could watch them together. This wonderful man also brought me things from home – photos, mail, and printed e-mails of support from friends and family. He was even able to bring up our dog, Willow, a few times.

I also had my parents, who made the one-way 4 hour drive every chance they got; who were there the day of my surgery; who, along with my husband and me, listened intently to test results, prognoses, and shed tears with and for me.

The roster of people who have touched and supported me - both at the time and since then - is long. Family, friends, and coworkers who visited, called, e-mailed, sent flowers, care packages, and cards. My sister-in-law, who drove several hours one way with my nephew to visit. The friend who loaned me a laptop. The friend who made meals for my husband, so he didn’t have to subsist alone on fast food or food from the hospital cafeteria. My aunts, who called and offered words of support - one of whom cried for me, as she asked, “Why?” I still don’t have an answer.

Eight years later, I still have all of those cards, and even now, they move me. Every single one of them is appreciated and cherished. Like my disease, that love and support has been woven into the fabric of who I am today.

Next: My Diagnosis Story, Part IV: Recovery...and Acception

Living Healthy

I've had a streak of about a month now where I've been feeling pretty good, especially if I'm taking good care of myself. I know; it's so common sense, but it really, is not always easy. There are so many external factors - work stress, children who wake you in the night - that you really can't control it all. Energy can still be an issue - I wish I could find some way to tap my children's energy - I could keep up with them so much better that way!

This quote helped put into words what I need to remind myself of when I'm on a good streak - to live healthy. Not to live healthy lifestyle, mind you, but to put my guard down a little bit and let myself live life a little less like a "sick" person. It's amazing how guarded and cautious you can become when you have a chronic illness - even when you feel good. Knowing that one day you may wake up feeling rotten, have it happen over the course of a single day or hour, or even end up in the ER with little to no warning means you treat your days and plans a bit differently.

 

 

Be well!

Daylight Savings Time

I hate the daylight savings time adjustment. I always have. Now that we have children, I dislike it even more.

It's finally Friday, and we still have not adjusted. In fact, the kids (and thus, we) have been up in the night more this week than they have in ages. Hopefully this weekend will get us back on track?

Also...winter? I'm over you. You can move on and stop stalking me now.

Just Say 'No' To (Butt) Crack

This past weekend, we took the kids to the indoor community pool. It's a nice pool - heated, with a kiddie swim area and a big slide. The kids love it, and I don't mind it either. As I was packing my suit for the outing, I was reminded of a mortifying experience I had last summer; one which leads me to exercise extra caution when putting on a swim suit. Please, let my experience be a lesson to you.

Last July, we took a family vacation which included trips to a water park. When had I packed my suit of choice at the time - a red tankini - I noticed that the fabric was wearing at the bottom of the tank, and the elasticity was going out of it a bit. Meh. Nothing too concerning, or even noticeable.

For our first vacation outing to the water park, I would take then-5-year-old W, while Chris and our 2 year-old stayed behind for a nap. W was eager to get going, as we were meeting some cousins there. We hastily put on our suits and packed our bag with the necessities - towels, sunscreen, water - and off we went!

It was a gorgeous day. We immediately found my sister-in-law and her three boys and got settled in. I even ran into an old friend from high school. We were having a blast. And then...

My son and I left the pool area for a quick bathroom break. Before we left the restroom, I gave myself a once-over in the mirror. I'm not sure why, but this time I checked my back. I hadn't done this before we left for the pool, and as it turns out, I should have. It wasn't just the edge of my top that had some wear...it was my bottoms, too.

That's right - the fabric had worn thin right down the middle 1/3 of the back of my suit bottom (not the front, thank goodness!). I'd spent a good portion of the afternoon showing everyone in my wake my butt crack.

I'm not sure if anyone noticed. What would they say? They were probably wondering what was wrong with the strange woman parading around in what could only be construed as a reverse thong. "Hello, everyone! It's my vertical smile!"

We hadn't brought towels to the restroom with us, so as we walked back to our chairs, I made sure to keep one hand behind me with all my fingers splayed out, hoping to cover my ass-ets. Not one to let a little butt crack spoil the fun, I spent the rest of the visit with a towel around my waist, but was also okay with keeping my butt hidden in an inner-tube as I rode around the "lazy river" with my son. Fortunately, he didn't notice and is still too young to be very embarrassed by his mom (yet).

The suit went into the garbage immediately after taking it off, and I headed to Target for a replacement the next day. Take it from me - check your suit thoroughly before putting it on, or you may regret it.

Colonoscopy Screening: The Most Wonderful Time of the Year!

I love some good colonoscopy humor. This billboard in the Twin Cities is one that I see on my commute to work, and it cracks me up every time I drive past it.

March is Colorectal Cancer Awareness month. The best way to detect colon cancer is with a colonoscopy. Please - if you are 50 or older, or if your family history indicates that you have risk factors - schedule your appointment. And if you're not 50 and are having pain or unusual symptoms, please see a doctor to get an assessment.

Being that IBD is a risk factor for colon cancer, I am one of the people in line for a colonoscopy. Also because of my IBD, I get them regularly, anyway, just to monitor my disease. Jealous? You should be! I'm due for my next one, and this time, I think I'm going to request a "Frequent Scoper" punch-card.

Colonoscopies aren't bad. I do, however, think that the prep is the worst part. So, here is a list of tips on how to make your prep as tolerable as possible: 27 Insider Tips and Tricks for Colonoscopy Prep

Happy Scoping!

Be Strong...

Random Saturday Stuff

Ah, Saturday, how I love thee.

We woke up to a gloomy, rainy day, so started with some blueberry muffins from scratch:

And because it's rainy, I foresee some blanket forts in our future:

Also on deck? Laundry and cleaning, of course! I'm also getting a haircut and running some errands this afternoon, and we've booked a babysitter for the evening. That's right, people - the hubs and I will have uninterrupted conversation! 

Earlier this week, when we told the boys we'd be going out tonight, W asked if we could go out on dates more often (we think he likes the sitter). Or maybe he's concerned about Mom and Dad not getting enough time together? Yeah, it's probably the former.

Have you got anything fun on deck for the weekend?

Puppy Love

Meet Willow.  Willow is a Welsh Terrier we adopted in 2002, only a few months after we were married.  She was our "first kid", so to speak.  She weighed only 5 pounds when we brought her home, was adorable, and so much fun.

Willow's second day home with us - 2002

Willow had a mind of her own, and this fact could bring much entertainment or frustration, depending on how you looked at it.

A failed photo attempt - 2004

But she was very sweet.  Even when she was naughty and had been on the kitchen table while you were out of the house, she was always excited to see you.  And she was a snuggler, which I miss very much, especially on those low-energy-don't-feel-very-well types of days.

Providing some comfort after surgery - 2005

Willow was a wonderful family pet, and "adopted" both boys after we brought them home.  She would grow anxious if she wasn't sure where they were, and would often "guard" them (we did not leave her unattended, of course) where ever they were.  In the morning, part of her routine - after she had been out for business - was to lay in the nursery in front of the crib, always with her back to the baby and watching the door.

Canine Babysitter - 2010

Three years ago this week, Willow fell suddenly ill with a severe case of pancreatitis.  The prognosis for this is usually good, but the vet just couldn't get things to turn around.  I drove her from our vet to another office where she was to see an internist, as a last resort (did you know they have those for animals? I didn't).  She was supposed to stay the night under observation and see the doctor in the morning, but didn't make it. She died only an hour or two before her appointment.

Last car ride - 2010

We still miss Willow, and have not yet gotten another dog. Puppies are a lot of work, especially with two little boys and hectic schedules, but I would really like to - when it will be fair to a dog to do it. I grew up with a dog and would love for the boys to, as well. They've actually been asking for a "real dog", but when we remind them that there will be a lot of poop to pick up, they decide they are not ready yet. Maybe in a few years we'll all be ready? I don't know, but for now, I still miss my girl.

Blueberry Donuts

Our boys LOVE donuts. I don't love donut nutrition facts. Even though I can't always partake in what comes out of the oven, baking is something I love to do, especially with the kids. (Yes, even when ingredients get spilled and a cup of flour ends up on the floor. That's how we learn, right?)

I was excited to try this recipe I found on Pinterest. These still don't qualify as health food, but they're a fun, easy treat at home, and you can still try and select the best ingredients for them - like whole-grain flour, ground flax seed, or organic ingredients. This recipe is adapted from this Strawberry Glazed Donuts recipe, with only a few modifications. YUM!

Baked Blueberry Glazed Donuts

1 c. flour (I used 1/2 c. whole wheat flour + 1/2 c. unbleached white flour)

1/3 c. sugar
1 tsp. baking powder
1/4 tsp. cinnamon
1/2 tsp. salt
1/3 c. milk
1 egg
1 tbsp. melted butter
1/2 c. fresh blueberries, pureed with 2 tsp seedless blueberry jam (I used organic berries and Trader Joe's Organic Reduced Sugar Blueberry Preserves)
1 tbsp pure maple syrup

Directions:

Have your kids wash their hands and pull a stool or kitchen chair up to the counter so they can "help". Provide a whisk or spatula to each child to quiet the bickering and resign yourself to the impending mess.

Preheat oven to 425 degrees.  Grease a 6-donut pan with baking spray. Keep the spray out of reach of your children so they don't spray each other with it.

 

Combine dry ingredients in a large bowl and whisk together. Create a well in the center of the dry ingredients and add in milk, egg, butter, and maple syrup. Stir until well combined. Stir in blueberry mixture, starting with 1/2 of it and adding more only if needed. Batter should be wet, but not runny. Reserve the remainder for the glaze.

 

Put the batter into a pastry bag or plastic bag and snip approx 1-inch off end. Pipe batter into each well, reserving extra batter. Bake for 7-9 minutes, until donuts spring back when touched. Cool in pan for approximately five minutes and turn onto a cooling rack. Spray pan again and continue piping the rest of batter until all donuts have been made.

 

While the donuts are cooling make glaze.

 

Glaze

3 cups powdered sugar

Reserved blueberry puree

1/2 teaspoon salt

1/2 teaspoon vanilla

1/3 cups cold milk

 

Stir all ingredients together until smooth. When donuts are cooled dip each into glaze and place back on cooling rack to let glaze set. When glaze has set - if you can wait that long - enjoy! We actually indulged ourselves while they were still warm and when the glaze was just set.

This glaze recipe made much more than what the yield for this recipe needs, so I saved the remainder overnight in an air-tight container, and used it to ice Blueberry Banana Bread the next day (sorry, I didn't take photos of that). Our 6 year old LOVED it! The next time I made these donuts, I halved the icing recipe.

Blueberry Banana Bread*
1 1/4 c. brown sugar
1/2 c. stick butter, softened
2 large eggs
1 1/2 c. mashed ripe bananas (3-4 medium)
1/2 c. buttermilk
1 tsp. vanilla
2 1/2 c. flour (again, I mixed half whole wheat flour and half unbleached flour)
1 tsp. baking soda
1 tsp. salt
1 c. blueberries, rinsed

Directions:
Heat oven to 350. Grease bottoms of 2 loaf pans, 8.5 x 4.5 x 2.5.
Whisk together flour, soda, and salt. Set aside.
Mix sugar and butter in large bowl. Stir in eggs until well blended. Add bananas, buttermilk, and vanilla. Beat until smooth. Stir in flour mixture just until moistened. Stir in the blueberries and divide the batter evenly into the loaf pans.
Bake for 45 minutes to 1 hour, or until toothpick inserted in the center comes out clean. Cool 5 minutes in the pans on a wire rack. Loosen the loaves and remove them from pans; cool completely. Ice with blueberry glaze and slice before serving.

*recipe adapted from Betty Crocker cookbook.