Category Archives: Living with Ulcerative Colitis

Ulcerative Colitis Q&A

I used to be really shy about answering questions about my Ulcerative Colitis.  I was short, vague, and tried to avoid answering as much as possible. It just made me incredibly uncomfortable to talk about a digestive illness.  Let’s face it.  The symptoms are far from cute and not something you’d typically discuss with people you don’t know well.

Lately, I’ve become much more comfortable — in part due to having six years to adjust to life with UC, and in part because I’ve gotten involved with the Crohn’s & Colitis Foundation of America.  Getting to know others who live with Crohn’s & Colitis has made it so much easier!  Ulcerative Colitis is part of who I am.  So in honor of the new challenge Goose and I are taking on for CCFA, I thought it might be fun to do a Q&A post about UC.

Ally and I are pros at crushing UC & Crohn's.

Of course, I can only answer from my personal experience and knowledge base.  Colitis & Crohn’s effect everyone differently.  But since it’s not something everyone who reads this blog can relate to, it might give you a starting point!

Ask me anything!  Treatment.  Goose’s response.  How it effects my day-to-day life.  Related illness.  Farting.  Whatever you’re wondering, don’t hesitate to ask.  Comment below or send me an e-mail at forwardisapace@gmail.com.

What questions do you have about Ulcerative Colitis?  Is there anything that took you a long time to get comfortable talking about?  Do you choose to keep certain big parts of your life hidden?

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Check me out, yo.

Today, I’m featured on Crohn’s On Campus with an article about Dating & IBD.

Since Goose and I had been dating just four months when I was diagnosed with Ulcerative Colitis, I was thrust into figuring out a new relationship and my UC diagnosis, all at the same time.  At 26, I’m now dispensing “expert” advice about the topic.  Sweet.

This is the romantic photo included with the article. Sorry to spoil that part for you.

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American Idol Live Tour and Meet & Greet

I already confessed that I’m not really an American Idol fan.  In fact, I’ve only seen episodes of the show sporadically and didn’t watch a single episode of Season 10.

I’m sorry.

But when I won tickets and backstage passes, well, how do you pass that up?

I had a wonderful time last night, and all of the performers were quite talented.  Let’s go back to the beginning.

While we were driving to the concert, Ally and I discussed that the only thing we knew about the Meet & Greet was that Casey put us on a list.  Right.  That was going to work.  A couple of young-looking girls showing up at an American Idol concert saying, “But Casey put me on a list!”  So before the show, we walked around talking to various Allstate Arena employees until we were told to check at will call.

And there they were.

See the little "CA" at the top? That meant that Casey left them for us.

I tried to take pictures during the show, but that was an epic fail.  We were in the back row, but we were steps away from the bathroom, which was fitting for tickets won through the Crohn’s & Colitis Foundation of America.  They were still great seats and we could see everything.

And wow.  What a talented bunch.  I loved the diversity of styles!  Any past season episode I’ve seen, it seemed like most of the contestants were pop-ish.  So there would be popish country, popish rock, etc.  This was far beyond what I expected — pop, rock, jazz, country — and I really enjoyed myself.

After the show, we went to a Meet & Greet (which we later found out was for family and close friends).  We met some of the other American Idol contestants, but spent most of the time chatting with our new pal Casey.  (Much to the dismay of some fans, who were not pleased at the amount of time we spent talking to him.  Sorry, Casey fans.)



Most everyone was very gracious, happy to sign our ticket stubs and pose for pictures.  Some of them seemed tired, but who can blame them?  Casey mentioned that this was Meet & Greet number 3 out of 4 that they do each night.

As the Meet & Greet was winding down, we wandered over to say good bye to Casey and ended up chatting with him and his friends for a while longer.  I guess when you talk about your health problems with someone at first meeting, it bonds you in a different way.  It felt like we’d known Casey for a lot longer than we actually have!

It was a good Saturday night.

How was your weekend?  What exciting things have you been up to?

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I Love CCFA & Casey Abrams

Yesterday afternoon, I had the privilege of attending an event for the Crohn’s & Colitis Foundation of America.  American Idol finalist Casey Abrams is being named the first IBD Icon by CCFA.  What’s IBD Icons?  Glad you asked.  It’s a program that aims to recognize people who live with Crohn’s or Colitis and are following their dreams.

Casey is in Chicago for the American Idol concert tonight, so the CCFA Illinois Chapter hosted a meet and greet with him.  I really don’t follow American Idol.  I think the only winners I can name off the top of my head are Kelly Clarkson, Lee DeWyze, and Carrie Underwood.  I know Clay Aiken was on the show too.  And that’s about it.  But I was excited about the opportunity to meet others with UC, and really interested in what Casey would say.  So I grabbed my friend Charlotte and off we went.

Apparently I was so excited to take this picture that I made a ridiculous face.

Being there was wonderful and strange all at the same time.  About half of the people in the room had either Crohn’s or Colitis, and the other half were there with someone who did.  It wasn’t weird to walk up to someone, introduce yourself, and then ask, “So, do you have an IBD?”

That caught me off guard at first.  I’m not used to telling my the story of my UC diagnosis within the first few words I exchange with another person.  It was also refreshing.  Outside of the blogs I follow, I’ve only known one other person with UC.  Words can’t describe how nice it was to be around so many people who truly understood.

My friend Charlotte seemed right at home with all the people discussing their bodily functions.  She discussed Casey’s favorite Disney Princess with him (Cinderella) and listened to everyone’s stories with support and interest.  She and Casey decided to take a serious picture together.

We also met Ally, who is pretty freaking amazing.

When Ally was 14, a manager at a department store denied her access to a bathroom, despite knowing about her Crohn’s Disease.  As they were driving home, she and her mom vowed to make changes so it wouldn’t happen to anybody else.  Ally contacted her Illinois State Representative, testified before a committee, and after a lot of hard work, “Ally’s Law” was passed in 2005.  As of 2010, Ally’s Law had been passed in 11 states and was pending in at least 10 others.

I thanked Ally for her hard work, and she replied, “Some things just fall into your lap and you have to do them.”  What Ally doesn’t seem to realize is that not everyone would.  I am grateful to her and others like her who work hard to make a difference.

At the end of the afternoon, Casey got up to address everyone.  He talked about how reluctant he was to discuss his UC at first, but said that because he’s now in a position where people know about him and his IBD, he feels it’s his responsibility to speak out.  Casey was just diagnosed about a year and a half ago, and his ulcerative colitis seems very similar to mine — frustrating and sometimes limiting, but mostly manageable.

As Casey spoke, it became clear that he was just like everyone else in the room.  He wanted to talk to those affected by Crohn’s and Colitis and learn something.  He wanted people he could relate to.  It was kind of cool to see that we all wanted the same thing: somebody to understand what it’s like.

After a Q&A session, Casey drew winners for 2 tickets to the American Idol Live concert tonight.

Guess who won?!

Ally and I are heading to the show tonight, and we’re even on the list for a meet and greet after the show.  I don’t ever win things, so this is especially exciting for me.

Have you ever met someone famous? Were they easy or difficult to relate to?  What is the coolest thing you’ve ever won?

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A Little Heath Update & Pictures of My Puppy

First things first.  My dog is adorable.

Hi, my name is Brady and I am really cute.

We’ll get back to Brady in a minute.

Today, I had a follow-up with my doctor about my recent flare-up.  He was glad to hear I was taking it easy, and I’m on the road to recovery!  (Hooray!)  We figure I’m about 60% better now and will be back in the game in the next three weeks or so.  We talked a lot about ulcerative colitis and my love of endurance sports.

I love my doctor because he’s honest, but I always feel like he takes my wants, needs, and overall happiness into account with his answers.  He said that once the flare up passes, he thinks I should go back to doing whatever it is that makes me happy and feels manageable for my body.  His only condition was that if I started to feel like a flare was coming (joint pain or other symptoms), I should back off for a few days, call him, and likely up my medication just a little bit until it passes.

I think this is a wonderful solution that will allow me to keep doing the things I love while listening to my body.

Justin Bieber also thinks this is great news and celebrated my making a heart with his hands. (I'd link the source, but the article was not a nice article about my Biebs. E-mail me if you want it.)

So I’m already thinking about a small-ish goal I can make a comeback with.  Stay tuned, kids.  It’ll be no Half Ironman, but I will do something to show my UC that I can kick it in the face.

In other news, Goose and I got home from the doctor and realized that Brady was really stinky.  Really stinky.  It was time to head to Petco and use the self-service dog washing station.

image

Why are you doing this to me?

image

Please help me.

I love the self-washing station at Petco because for just $12, you get all the dog shampoo you need, towels, access to their hair dryer, and best of all the mess is not at my house.  Goose did most of the washing and then held Brady so he wouldn’t shake while I dried him off.  Brady was very pathetic and sad the entire time, but he seems to still like us after all the trauma.

Have you gotten any good news lately?  What is a silly expense that’s worth it to you, like Petco self-washing is to me?

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Filed under Life, Living with Ulcerative Colitis, Training

Ulcerative Colitis & Love

Just when I thought, Okay, I’ve written enough about my ulcerative colitis lately.  Time to get back to other things… someone found my blog by searching for Ulcerative Colitis & Love.

My heart melted.

Goose and I started dating about four months before I was diagnosed with ulcerative colitis.  He’s been here, by my side, from the very beginning.

When we started dating, I was sick constantly.  Ear infections, strep throat, headaches, exhaustion, and of course, awful stomach aches.  After a few months, I was losing weight rapidly and didn’t ever want to eat.  I am sure I was far too graphic about all of this with Goose.  I was also wasting away into a stick person.

I don't have many pictures of my stick-person self.

It’s always shocking to go back and look at pictures from that time, because I can compare it to how I look now.  Then, it happened so gradually, I hardly noticed.

As the symptoms increased, Goose listened to my fears.  The early days of our relationship, the ones we spent getting to know each other, staying up all night talking, and flirting constantly were also full of conversations about my latest ailment.  I was frantic because I had no idea what was wrong with me.  He listened.

Apparently I also tried to hurt him while he smiled nicely.

And then I was diagnosed with ulcerative colitis and put on Predisone.  How he stayed with me during that time I’ll never know.

Let me set the scene for you.

Prednisone made me a crazy person.  I would call him on a Tuesday, sobbing, asking why he couldn’t come to visit me that very minute. (Um, I don’t know, crazy Lauren, maybe because our colleges were three hours apart and he had this little thing called class.)  It was impossible to go out for dinner, because I never knew what I could and couldn’t eat.  I had a giant steroid face.   (I also decided to get a perm to accent said steroid face.  Brilliant move.  Brilliant.)

Check out the awesome pimples on my forehead too. Prednisone rocks.

Blanka is pretty. I have steroid face. Yeah!

Clearly I am not suggesting that Goose should have dumped me for being diagnosed with an autoimmune disease.  That wouldn’t have been very nice.  But that’s a whole lot for a boyfriend of four months to handle.

He was patient, listened to me, and supported me.  He was fine with last-minute adjustments to plans to accommodate a sore tummy.  And he never let on that he noticed my awesome bathroom habits.

Six years later, he’s here to accompany me to doctor’s appointments, make breakfast so I can take my medicine, and pick up the slack when I need a little extra rest.

If that’s not ulcerative colitis & love, I don’t know what is.

Who supports you through difficult times?

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Weekend Days Have Lots of Hours

It is amazing how long weekend days seem when they are not filled with long runs and long bike rides.  What do people do with all this free time?

Last night, I went to bed around 10:00 and still managed to oversleep my 9:00 alarm today.  Good job, Lauren.  I blame all of the nights of insomnia this week.  I eventually made it out of bed to meet a close friend for brunch in the city.

Yum.  Still on the “everything I eat is bland” diet, I had some buttermilk pancakes and water.  But they were delicious, and I was actually hungry for them.  It was a welcome change.  Best of all, my tummy seemed to like them.  Baby steps.

After picking up around the house a little bit, I headed to the pool with Coach Amy.  The plan was to lounge by the outdoor pool at the gym, and then do a little swim workout.  I was ridiculously excited to swim some laps.  13 days of no workouts has left me craving the endorphins and structure that a training plan brings.

We lounged.  I read trashy magazines, Amy napped, and all was well.  Then it was time for a tiny workout.

I swam 450 yards and was so excited about it you would have thought I swam 450 miles.  It felt amazing to be back in the water, and reminded me that I can’t go crazy immediately.  I’m still not eating a ton (I have no appetite most of the time) and my body is recovering little by little.  The fitness will come back.  I’m not worried.  As a wise triathlon coach (who also has UC) told me, “Our bodies are fighting the disease and we need to let them.”  So I’m letting my little body fight, and taking it one “Little Victory” at a time.

What do you do on days that aren’t filled with training? Have you ever been surprised how long they are?

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Not the Right Time: Blessed

This is the final post in a series about my decision not to race 70.3 this year.  

For the earlier installments:
Not the Right Time for 70.3
Not the Right Time: Gathering the Facts
Not the Right Time: Wallow & Decide

On Sunday morning, I sent an e-mail and posted here about my decision not to race Steelhead.  I was feeling sad and a little apprehensive.  How would people react?  Would they understand?

One of my very best gal pals called me on Sunday afternoon.  “Lauren, I just got your e-mail,” she said.  “I feel like we need to mourn.”  So we did.  I told her everything from the very beginning, and she let me be sad and angry and relieved and every emotion in between.  I’m still mourning, but her call, and her understanding of exactly what I needed without me having to say it, made me feel just a little bit better.

My amazing friend Regina, who helped me mourn. Please note, this is not actually a photo of us mourning. It's just a photo of us looking pretty. Photo courtesy Becky Hill Photography

I got kind, supportive e-mails, text messages, and notes.  I’m overwhelmed.  I felt like a quitter and I was met with nothing but love.

I am not a quitter.  This is the end of one journey, but it’s not the end.  It doesn’t mean that ulcerative colitis has won, and I am resolved to come back stronger than ever.  I know I will, because I am blessed with love, support, and understanding.  It seems I have surrounded myself with people who see the bigger picture and know that there are more important things than just one race.

Who helps you when you’re feeling down?  

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Not the Right Time: Wallow & Decide

This is a continuation of the story of my decision not to do Steelhead 70.3.  

Read the rest of the story here:
Not the Right Time for 70.3
Not the Right Time: Gathering the Facts

Even before I was armed with all this new knowledge, I was thinking about what I was going to do about Steelhead.  Something in my gut (pun intended) told me things just weren’t right.

I won’t lie, there were lots of tears.  There was some wallowing.  There was a particularly cute night during which I sobbed hysterically and asked Goose over and over again, “But why does my body want to attack itself?  Why can’t it just let me have this?”  I worried that giving up was like letting my ulcerative colitis win.  I do not want my life to be defined by my disease.  I want to kick it in the face, beat it to the ground, and show UC that it cannot defeat me.

Super strong colitis-fighting triathlete muscles. Clearly.

There was plenty of guilt.  My amazing coach, Elizabeth, had heard me on the radio and was training me free of charge with the stipulation that I raise money for a charity involving women in sport.  I didn’t want her time and energy to go to waste.  My friends and family donated to Girls on the Run – Chicago, my charity of choice, to show their support of my big goal.  I felt like I was letting everyone down by not making it to the finish, or even starting line of my race.

But I dug deep.  I was honest with myself.  I am not an incredible athlete.  Yes, I have finished marathons and triathlons, but I am a true back of the packer still navigating my way around this sport.  I need a good day to make the cutoff times for long distance events.  I need my body to be strong, my mental game to be 100%, and ideally, some weather in the 60s.

Given the circumstances surrounding Steelhead, there was a very small chance that I wouldn’t be flared on race day.  I know my body.  I know that stress triggers flare ups, and I know that I always have a tiny flare at the same time each month.  This tiny flare, of course, would fall on race weekend.  I also know that it is entirely unrealistic to hope for cool weather in August.  In the midwest, anything can happen, but it’d be ridiculous to bank on weather in the 60s, 70s, or even low 80s.

So then I did what anyone else would do.  I kept Goose up until all hours of the night, over-analyzing every aspect of the decision.  I called Dad and listened; called Mom and talked.

Look at them. Seriously the best support system ever.

Not one of them told me what to do.  All three said they would back me 100%, no matter what I chose.  They listened, and offered their perspectives.  They gave me their honest opinions when I asked for them.

Then I decided.  I took the opinions of my loved ones into account, reached out to my doctor and my coach, gathered up all the facts and then listened to my gut.

The truth is, I probably could push and make it to the starting line at Steelhead.  If I did, I truly believe there is a 99% chance that I would be pulled from the course for not making a cutoff.  To plenty of athletes I know, that 1% chance would make it worth it.  They’d go out there and give it their best shot, and they might even succeed.

That’s just not me.  It’s too big of a risk, and one I’m not willing to make.  I don’t think my body can handle training right now.  I need leisurely swims, a little elliptical time, and some easy yoga.  I need strolls with Goose and the dog.  I need rest and recovery.  And, in due time, I’ll figure out what my new goal is.

Have you ever decided not to do a race you’d been training for?  How did you make the decision?

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Not the Right Time: Gathering the Facts

So we’ve established that I’m no longer training for 70.3.

During the course of my training, I noticed some (seemingly unrelated) funky things.

I had what was diagnosed as iliotibial (IT) band syndrome, but it didn’t follow the typical pattern of the injury.  It was pain in my hips, especially the left one.  It hurt after being still for a long time — watching a movie, driving to and from work, first thing in the morning.  It also hurt a lot when I was running.  Looking back, I also notice it was worse during mild ulcerative colitis flare ups.

During my first metric century, I had some pain in the joints in my wrists.  It was easy to just ignore, because I had just cycled over 62 miles — of course my wrists hurt from holding the handlebars for so long.

When I raced the Disney Princess Half Marathon, Nutty 15k, and Trek Women’s Triathlon, I had a very difficult time regulating my body’s core temperature in the heat.  I took necessary precautions like drinking more fluids, slowing down a little, and hydrating during the week leading up to the race.  But come race day, no amount of ice in the sports bra and water dumped over the head could cool me down.

It wasn’t until after the Trek Women’s Triathlon that I started realizing that other triathletes on the course didn’t seem to be having these issues, or at least not to the same degree.  At a race where I was arguably one of the better-trained athletes on the course, this didn’t seem right.  I resolved to write them all down and ask my doctor about them.  Wouldn’t you know it, every single one is caused by my ulcerative colitis.

On Friday, I was diagnosed with arthritis in my back and joints, caused by my UC.  The arthritis in my joints, while frustrating, will be useful, too.  It is connected to my flare ups, and my doctor thinks it will usually precede them.  So when I notice pain in my joints, I can increase my daily medication by just a little bit and probably avoid the flare up altogether. (Take that, UC.)  The arthritis in my back, however, isn’t linked to flare ups and will come and go.  (Hey, back arthritis?  I’d prefer you go more than you come, okay?)

Armed with all of that information, I took a long time to think and discuss my options with the people closest to me.

Have you ever been surprised to find a connection between seemingly unrelated things?  Who do you turn to when you need to make a difficult decision?

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