Guest Post: Taylor's Story #3

I quite literally have lost count of the amount of times that I have sat down to write this last blog.

What I have determined that it is simple to write about ones experiences in hindsight, because as I began to write about my life currently I started to become vulnerable – and I, like a lot of people, spook at the thought of vulnerability. Nobody likes to be exposed.

So this is me, stripped down telling you about my life, right now - sans ostomy, living with my J-Pouch.

When I walked into my lectures in September I fit in. My clothes covered the scars scattered over my abdomen, my makeup put colour back into my cheeks, and my Percocet’s masked any post-surgical pain I was feeling. I conversed casually with my fellow classmates about our summers, and we discussed the upcoming semester. But mostly I fit in because my high anxiety and constant need to be close to a bathroom hadn’t returned which left me with a sense of relief and freedom.

I liked that I fit in, that I was in the driver’s seat again. I started the semester ecstatic with this new found control that I had over my body, until I had one day I had a pain - a bad pain I wasn’t used too. I tried not to panic. I didn’t tell my parents, I gentility broke it to my roommates that I was feeling ill, and I tried to hide it from my professors. This was very ‘2009 Taylor’. On the outside I was composed, but on the inside I was screaming. Screaming at myself for getting too comfortable being healthy - screaming at my body for a break.

This was it, this was the ball dropping.

As I laid in the fetal position in my bed with my roommates by my side I remember thinking it was all too familiar. I had been here before, unsure of what was happening to my body, hunched over in agony expecting the worst but hoping for the best. As the pain continued to get worse, I contacted my surgeon and my GI and let them know what was happening. After, A LOT of emailing back and forth, and a handful of phone conversations, uncertainty was still lingering. Uncertainty hung in the air for a while – and to make a very long story short it was determined that I had a partial bowel obstruction that thankfully ended up passing on its own. Since then I have only had one obstruction and we are hoping that I don’t continue to suffer from an adhesion problem!

This triggered something inside me, something that made me feel like I didn’t ‘fit in’ anymore. I had missed too many lectures, I had been seen keeled over in pain, and talking to professors to hand them doctor’s notes. This wasn’t something that I could cover with clothing or makeup or pain meds. I felt uncomfortable and exposed as people slowly started to unpack my complex health background that I had kept secret for so long. The longer this went on the more defensive I became when my peers asked why I wasn’t in class, or why I needed modified accommodations.

In the midst of furiously building up my barriers, a friend said something to me that make me reconsider the wall I was constructing. They noticed my constant tug at the bottom of my shirt and asked why I was so self-conscious – it’s not like they didn’t know what I had been through! I told them that I just wasn’t comfortable with the scars that speckled my stomach because they weren’t faded yet. As quick as the words spurted from my lips, my friend responded with something that changed my way of thinking. He stood back, looked at me and said, “Stop. When I see those scars, yes I am reminded of the battles that you have had to endure, but mostly I am reminded about the strength, courage and poise that you have shown throughout. I think your scars are beautiful and I would never want you to be ashamed of them – in fact I think that you should embrace them”.

So this is me embracing my battle field of an abdomen – realizing that it is silly to cover up the scars that tell the story of you, in order to ‘fit in’. What I am learning right now is that the hardest decision and the right decision are often the same thing. It might be hard to tell somebody that you have Crohn’s or Ulcerative Colitis because it isn’t very ‘glamorous’, but the more barriers we build up around ourselves the longer IBD will be stuck in the closet.

So pull your shirt up, flash the world a glimpse of that beautiful disaster of a tummy and say, “Yes I have IBD – and I am not ashamed!”

Taylor

Guest Post: Taylor's Story #2

"Waiting for the Ball to Drop"


Alright so where did I leave off? Right! So I happily welcomed an ostomy into my life on May 3 2011. When I say that, I kind of feel like I am announcing the birth of a baby, and in a lot of ways the ‘birth’ of my ostomy was a fresh start for me, a new life if you will, that is if I wanted to get REALLY sappy.
As I was lying in the hospital the night after my surgery going in and out of consciousness I felt a wide spectrum of emotions. I was relieved everything had gone according to plan, I was ecstatic to hopefully feel healthy again, I was unbelievably nervous about the stigma attached to an ostomy, but mostly I was just waiting for the ball to drop. Waiting for something to go wrong. Waiting for my body to turn on me again.

I waited, and waited, and waited…

And then I waited some more….

Weeks passed and I was still waiting for the ball to drop – for the luck I was used to, to kick in.

But it didn’t. The luck I had been accustomed to, the luck that left me more often than not in the 3% of people who experienced complications and reactions had vanished. As things kept getting better there became a point where I had to make a conscious effort to stop waiting and to start living. I had been confined to the boundaries of my house for so long, and had developed such high anxiety when I left those confines that I was terrified of actually existing in the real world. So I decided to take this as an open invitation to face these fears and start living again.

Living felt pretty neat.

The months in between my surgeries were hectic – and it was awesome! I was finally able to hold down a full time job. I enjoyed the cottage life I once lived for. I tutored two amazing kids. I went to a family friend’s wedding and actually enjoyed myself. I met new people. I finally got to experience downtown Toronto the way it should be experienced. I took a weekend road trip to Montreal with one of my best friends. I revisited the gym. I became reacquainted with my dusty Canon Rebel Camera. I danced like a maniac at Taylor Swift concert.

I lived like a ‘normal’ twenty year old girl should for, four sweet summer months.

I had become a blur until one day my dad told me to slow it down. He saw right through me…parents always do, they have this freaky “spidey sense” where they just know, ya know? And he knew that deep down I was still waiting for the ball to drop. He saw that I was terrified of becoming sick again as I frantically tried to scrounge together as many ‘normal’ twenty year old experiences as I could.

Don’t get me wrong, summer 2011 was an amazing summer – even with a couple major surgeries thrown into the mix. Yet still, being twenty years old and not controlled by bathroom locations was surreal to me, so surreal that I could not for the life of me imagine not being controlled by them post ostomy reversal. When I pictured myself going back to university in September sans ostomy I didn’t like what I saw. I pictured myself held up in my bed tiredly writing essays, dragging myself to class every day. I pictured myself crying in professor’s offices, as I had done countless times in the past. I pictured myself turning down yet another social engagement with friends. I pictured pasty, underweight, sick me.

So as I shuffled my pale blue hospital booties into the operating room on August 18 2011, I wondered what my future was going to look like. Would my body accept the J-Pouch? Would life without my ostomy be fulfilling or would I be tied to the bathroom again? Would I get pouchitis? Would I get bowel obstructions? Would I be able to successfully return to school? Would I…Would I…Would I – constantly ringing in my head.

Seeing an uncertain future is scary. It is one of the scariest things I’ve known. When what is to come turns into a vague half drawn picture it becomes easy to revert to what happened in the past and believe that is what is to come in the future. What is brave is believing that things can change. Believing that the future can hold happiness, even if you’ve been broken in the past – that’s what’s brave.

So be gutsy, be brave, and keep fighting your fight!



Taylor

Guest Post: Taylor's Story

This time three months ago going back to school in September seemed like an ambitious task as I was lying in a bed on the 14th floor of Mount Sinai Hospital doped out on morphine, marvelling over my ostomy free abdomen. I had just completed the last surgery in the J-Pouch procedure and I was excited and anxious to see how my new and improved insides were going to work. I told my doctors, nurses and pretty much anybody that would listen that in two and a half weeks I WOULD return to complete my fourth year of university. Guess where I am now? Here I sit, about three weeks shy of completing the first semester of my fourth year! Pretty cool eh?!

I’m getting ahead of myself! Let me start from the beginning. In March of 2010 I was diagnosed with severe Ulcerative Colitis. At this time being diagnosed was a great relief as I had become very ill in November 2009. I know what you are thinking – wow what a quick diagnosis! My response? Thanks mom! My mother has Crohn’s Disease and already had great GI doctors we knew we could rely on.

I did 5-ASA, Remicade, and Imuran with little success, a ton of weight loss, and one bad allergic reaction. Then one lengthy hospital stay later the ‘P word’ was a big fat part of my life…Prednisone. Ugh. One week before I was supposed to return to complete my third year of university I got out of the hospital and was solely relying on this horrible drug to keep my body from turning on me again. As much as everybody hates the moon face, the weight gain, and the unpleasant moods that come with it - I attribute being able to finish my third year to this horrid medication. So, uhh – thanks Pred!
When I think back to this time I very much consider myself in limbo. You know that middle ground where you’re not quite sick enough for people to recognize you are ill, but not quite well enough to consider yourself healthy? If you’re reading this, than I am sure you do! I spent about eight months in this limbo state, until February 2011 when I pleasantly tapered my dosage. Did that sarcasm translate? There is NOTHING pleasant about tapering. One word: withdrawal! Regardless, I tapered because I was told medically I had exhausted my options and my next best choice sat in the world of surgery. By this point I knew this was coming, and I was looking forward to saying bye-bye to Cole, my diseased colon. Cole and I had developed a mutual hatred towards one another over the years and I happily welcomed an ostomy into my life on May 3 2011!

As I battled endlessly with my own body I was also in the midst of other fights that life presents. Fights that could not be halted due to an illness – fights that were ultimately perpetuated by it. I fought a long battle to stay in my competitive, average based program at school. I fought for a three year relationship with my first love. I fought with the feeling that I was constantly ‘crying wolf’ and leaning too hard on those around me. I fought to try and be a ‘normal’ university student. I fought with the never-ending feelings of guilt, as I watched the stress that being sick brought to the people I loved the most. And I constantly fought with myself over what I could not control.

What I have learned during these times is simple: there are things that you can control and things that you cannot control. You cannot control your body attacking itself - but what you can control is how you manage your downfall. One can choose to be mope, and say ‘why me?’, or one can choose to look at the battles you are facing as growth. Don’t get me wrong, I’ve moped and asked, ‘why me?’ a time or two; but now I am at the point where I believe that accepting what has come to be and being able to see that sometimes the curveballs that life throws at you can be beautiful in the end, even if they hurt like hell during the process.



- Taylor

Guest Post: Corinne's Story

Hello everybody!  Colon Girl here from the Poopie Pantz blog at colongirl1.blogspot.com.  I was invited to do a guest post on this wonderful blog and I was soooo flattered!  It makes me so happy to know that some people are actually reading me.  It feels like a dream most of the time.  

Okay, well enough with the mushy stuff and let's get to the actual blog post stuff.  I am not going to ramble on and on about the problem I know we all have.  Unless, you don't and are reading this blog out of pure entertainment/medical reasons.  I think I speak for many when this disease needs to have more public access.  We need to talk about it, people!!!!  Because having to explain something like this to anyone who hasn't a clue what colitis or Crohn's is, is like re-living the experience.  Well, I guess it's good in the way we are being open about talking about our illness.  But I get tired of explaining it time after time to people.  

Well, I've been asked by many of my teachers throughout the years, and I'm sure you have to, a certain question. 

If you were on a stranded island what 3 items would you take and why?

I don't know about you, but my answer to that has changed like a ba-gillion times.  My illness has had a gigantic part in my "always changing decision" process, but also my age too.  I'm not that indecisive, I swear.  I think.  (Hehe...did you get that?)

Okay.  On to my answers to this question.  When I was ten years old, my answers were similar to 1. a dog 2. a CD player 3. a CD.  Yes, it was the 90's.  I had a discman.  Now, if you think about it too much your head will explode because it just does not make sense.  What happens when the batteries run out?  How will you eat?  What do you think the dog was for, just kidding!!!!  I love dogs sooo much!  I am going to be the crazy dog lady one day, instead of a bunch of cats. 

Back on topic.  It's not the logic of your answer.  The question is to make you think about what you deem important in your life.  I kinda tweaked the rules a bit, so 3 things on an island would be enough.  

You don't have to worry about food, shelter, or getting off the island.  So there are clothes for you, a house, and meals.  And your family is already with you, so you don't have to ask for them.

So my answers are now:

1. indoor plumbing/toilet

2. a dog

3. a book

Indoor plumbing and toilets go hand in hand, here, right?  Do I have any objections?  What's the main reason we have indoor plumbing?  And I could care less about toilet paper.  I'm on an island.  I'll use leaves.  When I said I love dogs, I really meant it.  I cannot live without one, that's how important they are to me.  A book because I love reading.  Also, I need something to keep me company in the bathroom.  And, no, I'm not bringing the dog into the bathroom.

What are your 3 things?

Thanks for reading this post!  Again, I'm Colon Girl at colongirl1.blogspot.com.  Have a safe and happy Holiday!  I wish you all the best!

- Corinne

Homeland

It doesn’t have a flag, or an anthem, but it definitely has a 19th floor and IV poles and mechanical beds. Oh yes, back to the homeland. 

I would say that I’d been doing so well, though I fear that’s a lie. I had been staying out of the hospital for a month, putting one foot in front of the other, going to classes and being present in my life as best as possible. But as of Monday evening, it was time to head back to the homeland.

As I was throwing out some garbage before I hailed a cab to the hospital, I ran into my RA, and she asked how I was doing, to which I said, “Going back to my homeland.” She dropped her keys and gave me a no-way look. Yes-way. Oh, yes-way indeed.

But this post is not about me in my homeland. No, it is about someone I met here. 

In the ER, I had this lovely nurse, whom I’ll call Cleo. When she gave me some pain medication, I knew it wasn’t enough for me to get relief and so I asked if I could have more, followed by an explanation that I was not a druggie and that I had so much tolerance that I needed more pain medication but I knew how it sounded. She shook her head and said it didn’t sound like anything and that she completely believed me and that I had a chronic disease and needed it. Cleo was so nice and put me at ease when I was in so much pain. Then she told me her story:

Cleo had been feeling unwell, just general under the weather and GI boating and discomfort. Her doctors told her she was fine, but her symptoms persisted. She was getting married, and after the wedding her symptoms were even more uncomfortable and she went to the ER and demanded a CT scan. Lo and behold, they found it. It was a 20 pound tumor growing in her belly. The take away from Cleo’s story that she kept repeating? “I knew my own body and I knew something was wrong, I was tired of not being listened to - something was wrong.”

Being ‘in the homeland’ can suck. But there are also lots of lessons to be learned, and sometimes it helps to have the most important lessons reiterated by someone in the healthcare profession.

Jennie

Dandy

I wanted to share an interesting theory that I was taught this week in my psychology class. 

The questions begs to be asked, are you a dandelion or an orchid?

This is an odd question - but very meaningful, I promise. The theory goes as follows: a dandelion will flourish anywhere, grow anywhere - be it the side of the road or in a well-tended garden. An orchid, on the other hand, will only thrive in the very best of circumstances; the right light, the right amount of water, the right touch. This is related to children - and people in general. Some of us, no matter what happens, will push forward, fight, and move on - thus, a dandelion. And some of us need more help - i.e. an orchid.

I think there’s a difference between who we want to be and who we are. But let me clarify: who we want to be could be anything, and we have the power and the dreaming-room to make it happen. Who we are is everything we are genetically and biologically, the things we cannot change about ourselves like our temperaments and diseases. There is no shame, and in fact should be pride, in honoring who we are to get to who we want to be. 

Where am I going with all of this? If you’ve classified yourself as an orchid, then ask for the help when you need it and make sure you get the right amount of sun, water, and love (and you dandelions out there need it too!). It can be a struggle with a chronic illness to know when to ask for help, because at least for me, it can seem like we’re waving the ‘help-me’ flag all the time. But think about it this way, you may be hesitant to ask for someone’s help, but you’d probably be the first to give it.

Jennie

Enough is Enough is Enough

When I go to the doctor’s, I always bring along my trusty little journal. All of the medications I’m on, the tests I’ve had, and the names of the doctors I call my own are scribbled down in my incoherent cursive writing. It’s so helpful to have everything written down and be able to reference things, but I think of the journal more as my ‘Yes-we-will-be-equal-partners-in-this-decision-today-thank-you-very-much’ cue to whoever I’m seeing on that particular day.

I’ve had it up to my ceiling with these past few months. I’m only almost a year and a half out of my surgery and I’ve had too many obstructions to count; recap of Jennie’s summer - blockage every 4 weeks, every 3 weeks, every 2 weeks, every week... you get the idea, hence my chronic state of life at the moment. I’ve stayed in school and kept on top of work and done my very best to honor my commitments and see my friends and have my life. But who am I kidding? This isn’t the one that I want to be living, I want certainty and I want my body back.

But enough is so enough. I have a chronic disease, and no matter how much I blog or talk about it, sometimes I’ll wake up and before I remember where I am or even perhaps who I am, I think, is this really my life? Do I really have a chronic illness and an ostomy? Is this really what I have to fight each day? And we all know the answer is yes, but sometimes that doesn’t make it any easier to face my reflection in the morning and try to carry on in spite of the hand I’ve been dealt. It’s perfectly fine and good and necessary to get upset and cry - i.e. my last GI appointment when I cried for 3 hours followed by breaking down in the middle of the pharmacy - but here is my pledge to myself, I am going to do my best to put my chin up and move forward and get what I want out of my life.

I recently heard this quote: “In life, you don’t get what you deserve. You get what you negotiate.” And at first I was like, Wait a moment... but when I thought about it, it made a lot of sense. To me, it says that if I want my life, then I have to fight for it, want it so badly that I can taste it, and make sure that I’m heard. That’s a tall order to ensure I’m listened to by doctors who are decades older and who think they have me all figured out. But unfortunately, I’m the only one who knows what it’s like to be in this body of mine.

I heard another quote recently, “What’s the difference between school and life? School teaches you a lesson then gives you a test. Life gives you a test then teaches you a lesson.” So onward and upward, the battle continues. My armor is chipped and the paint may be peeling, but maybe that makes it all the more beautiful.

Jennie

The never-ending battle to justify

I hate that this disease is so invisible.  I hate that on the outside I look like a healthy, happy, well-adjusted girl, while on the inside my body is fighting the battle of its life, both physically and emotionally.   Well really I guess I just hate this disease.  

They say that stress really exacerbate IBD and I can now say that I agree completely.  I hate that I feel the need to explain the way my pain feels and describe my complete and utter exhaustion right down to the nitty gritty in order for people to even briefly understand, or act like/pretend that they do.  I hate that I feel guilty for not having my usual pep and excitement.  I feel bad for needing to sleep or cry and not being up to my usual energy levels. I am a fun loving, well rounded, happy girl, with many friends ( some say too many) but find that when I am not well or when too many things are going on in my life, I feel ALONE, and I want alone. 

I am a student teacher and so excited about a career teaching students and forming the foundation of knowledge they will use for the rest of their lives.  I am proud of this career choice,  and the steps I am have taken and hurdles I have jumped to get myself here but the thought of getting up and spending  another day in a classroom is terrifying to me right now. The idea of 5 more weeks (23 more days including days off to see specialists) of practicum is so overwhelming to me when I am so unwell and utterly and completely exhausted to the point of tears.  

I know I can do this, I know I am strong enough and I have the support, but sometimes this disease is a sneaky reminder of how delicate and wonderful the good times are.   I know tomorrow is a new day and I know to take each week one day at a time, one hour at a time, even one moment at a time, but I, like Jennie, am a planner.  I hate that this disease gets control so I am going to try my very best to take that back.  I can try to fake a smile and put one foot in front of the next.  As hard as things seem right now, this will be my only salvation.  So this is what I am going to have to do.  I need to trust that it doesn’t matter if people understand, what matters is that I keep on fighting.  This disease will not shatter my dreams. Try as it might I can not and will not let it hold me back… but I can still hate it!

Shelby

Uncertainty

Right now, it seems like so many things in my life are up in the air. As I try to move forward and complete homework and see friends, I move back and forth between the medical world and the real one as my bowels continue to present issues for me. I continue my home TPN, try to keep my chin up, and push away my anxiety about my uncertain near future.

This past Tuesday, I trekked to my GI, butterflies in my belly, medical notebook in hand. It felt like I was holding my breath, like my future was being held by doctors and unknown to me. I was called in to a room and eventually the doctors came in and my heart jumped in my mouth. Soon the questions hit an emotional spot and I began to tear up, and soon, full blown sobs. I tried to fight through the tears and speak clearly, but I was devastated and exhausted and in pain and had no time left for pleasantries. 

I need bloodwork, and so at one point, we ‘took a break’ and I was whisked off to get poked. The lady was very nice, she rubbed my arm and said, “Don’t worry, he’ll fix you.” I began to cry harder. Even though I’m sure she meant it with the best intentions, it’s just not something someone should say to a chronically ill person. No one can fix me, not really, and that’s too much to put on anyone. 

I hate taking one day at a time. I’m a planner, I want things organized, things ready, things set. But I am doing my very, very best to take one day at a time, which is a work in progress. It’s all I can think to do when the future is as blurry as mine seems to be, one foot in front of the other, a big smile, and belief in myself and my future - that’s all I can do.

And I hope that one day, all of those little steps and big smiles will do the trick and I get my future back.

Jennie