Decision to Incision

Here I was, the year 2007 and not long until my 21st birthday.  A big decision, life changing, was lying before me.  My Crohn's Disease was unresponsive to medicinal treatments beyond prednisone, and prednisone is no medication to rely on long term if it can be prevented as the long term side effects are serious in themselves: osteoporosis, glaucoma, and high blood pressure to name a few.

What was my decision to make?  My doctor brought up the word surgery.  Ileostomy to be exact.  This surgery would remove my large intestine.  My small intestine would then be brought to my lower abdominal wall to create a new opening where waste (stool) would empty from.  My plumbing would be rerouted.  From that point on, I would need to wear an ostomy appliance on my abdomen to collect the waste.  The ostomy appliance would adhere to my skin by a wafer (which is like a 4x4 bandage with a quarter size hole in the middle).  A collection bag attached to the wafer.  This would need to be worn almost all of the time minus the time it would take to remove the old one and put on a clean one which typically would need to be done once or twice a week.  Once my large intestine was gone, there would be no putting it back in or getting a transplant.  What's done is done.  Although some people have the option of a reversal if there is still a rectal muscle there, so I still had that, but my colon would be forever gone.

We met with my surgeon who impressed upon me a great knowledge of my illness and the ileostomy procedure.  He was much like my gastroenterologist in that he took time with his patients to discuss the matter at hand and to give all of the information that patient needed about their procedure.  He answered all the questions we had.  I had a notebook with all of the questions my parents and I had come up with.  And I would recommend doing this regardless of the illness you have and the procedure you're facing because you get in the office and nerves take over and your brain ceases to function properly.  Also, bring a pen and take notes, or better yet, bring another person to take notes and be that extra set of ears.  The doctor took notice of my notebook and kept asking what the next question was.  All of the listed questions were answered with sincerity.

This matter of surgery wasn't to be taken lightly.  And it definitely wasn't our desire to take the issue into our own hands or leave it in the hands of doctors regardless of their knowledge.  We took it to God.  And after meeting with the surgeon, there was such a peace about me having surgery.  Peace.  Yes, that is the perfect word for what we felt.

The next phase was to get my stomach marked for the surgery.  They needed to mark where the doctor would need to make the incision for my stoma (the opeing formed for my small intestine to be brought to the outside of my abdomen).  That made this whole situation more real.  And me a little nervous.  They wanted to be sure the stoma wouldn't be in an awkward place in relation to my body shape, where my waist is, where I bend, that sort of thing.  They wanted it in the best place for me.

I've wondered at times what people thought of me even considering this move.  I guess to most people, it seems like it could be a voluntary decision in that I was still functioning after all.  And maybe the illness wasn't viewed as serious to a lot of people looking in from the outside.  We did get some well meaning advice from others and some of it we tried to incorporate which only made me feel worse and send my illness into overdrive.  And then I didn't look sick.  Crohn's disease is essentially an invisible illness for me.  That's how I felt sometimes.  If someone didn't know I had it, then they wouldn't know I was struggling with something.  So why would someone say okay to letting a doctor remove a body part that requires you to wear a bag on your side that holds stool?  It's gross, it makes you less desirable, it changes everything.  I thought those things for several years.

I fought against the idea thinking I could never possibly have to go through something like that.  But I couldn't keep fighting it.  Because my body couldn't keep fighting it, the Crohn's.  I was fortunate to not be force into the decision.  I'd had years to think about it; lots of ups and downs with my health.  Some people don't get that choice.  It's an emergent decision placed upon doctors.  Then the patient wakes up in a hospital room with this bag on their side wondering what happened.  Wondering why.  Having to take a drastic change in their body and try to make sense of it.  I'm glad I wasn't forced into that.  The decision was hard enough as it was .  And I realized with this time that I had to think, that wearing an ostomy bag really wasn't that gross.  I wouldn't be any less desirable.  But it could change everything with my health.  It would hopefully give it back to me.

Not What I Imagined

Reality: something that is commonly different than what I've imagined.  The reality of the world of adulthood was just that way.  I had imagined freedom to do what I wanted to do at the time I wanted to do it.  I had imagined freedom to spend money like I wanted because now I had a little more to spend.  I had imagined just that general freedom of choice.  I know I'm not the only one here.  Right??

Now there is some reality to these imaginings.  I liked doing what I wanted at my chosen time like staying up late, but it was rough when I needed to get up early for work in the morning.  I would tempt fate sometimes and eat poorly and consuming foods that my Crohn's Disease didn't like. And that would cause me pain.  I spent my money like I wanted: after all the deductions were taken out and after bills were paid and after I worked a 12 hour shift on my feet for several shifts in a week.  Yea, that was fun initially maybe.  But money vanishes quickly.  And that's no fun.

A big choice I made was choosing nursing as an occupation.  I finally found something to spend my time doing during my working years.  Everything was going great.  I was the typical new graduate: eager to use my training and build on my skills, ready to be successful.  But even in a job that I imagined to be low on the stress level as far as nursing jobs go, I found my reality to still be stressed over work, anxious of what-ifs, doubtful of my abilities.

That's probably typical of most new graduates and employees as well.  As time goes on, things get better as you gain more experience and more confidence.  As I learned my job and my role as a nurse, things did get better.

What couldn't seem to get better in my life was what seemed to take over my life-Crohn's Disease.  The active disease would continue to rear its ugly head.  Here I am trying to be an adult, stand on my own two feet, help in the care of people whose families expected their family member(s) to be cared for with efficiency, and I couldn't stay well.  The stomach pains (from any food or drink consumed), bloody diarrhea, and quick weight loss were present yet again.

It's as if stress had some impact on whether I'd have a flare-up or not.  I don't recall being stressed to a great degree in nursing school  Although it was hard.  The N-CLEX may have been the most stressful part.  But with the starting of a new job (my dream job and my first as an adult) and realizing that it wasn't my dream and thus starting another new job within a short period of time caused me much stress, worry, and anxiety.  I like consistency, routine, and knowing what's coming (sometimes).  This was a lot of none of those things, and my own self doubts and personal pressure added to this.

There is no known cause of Crohn's Disease as of yet (although random people like to throw out ideas of the cause is and what we who suffer from it should be doing so we won't be sick).  And I am in no way saying that this is what caused my illness.  It's only that stress build up seemed to be a precursor to flare-ups for me.

I had taken all available types of medications used in the treatment of Crohn's Disease at that time.  There were other named medications out there, but they were comparable to the medications I had already tried.  Trying these other medications would have been useless.

We went to my gastroenterologist's office expecting the same news we were accustomed to hearing: start on prednisone (at a massive dose and taper down according to instructions) and here's the next
medication for you to try.  Instead, we got the sobering news I just mentioned.  There were no more medications to try that I haven't already tried in a comparable brand.  Basically, if those didn't work, there's no reason these others will.

My doctor then brought up the word SURGERY.  This meant the removal of my large intestine, my small intestine would be brought to my abdominal wall, and I would be wearing an ostomy bag on my side that would collect stool that would need to be emptied from the bag periodically throughout the day instead of eliminating waste like the average human being does.  Sounds terrible right?  Now months, years prior to this time, that was a bad, horrid, don't-say-that-I'm-not-doing-that-ever! kind of word.  Here, the surgery word was still bad to hear, but I remember at one point, on my Crohn's roller coaster ride that never seemed to end,  just sitting on the side of my bed, tears rolling down my face, my parents at my side, and asking them, "Why me? Why am I having to go through this?"    And now here I was with a choice, a life altering decision I had to make.

When Do I Start?

Graduating from nursing school was an amazing accomplishment for me.  I didn't know if Crohn's Disease would ever let me be successful because it always seemed to show up and just be in the way. It slowed me down.  The nursing program I was in was a year long program, and there was no pausing for illness.  I would have had to start over if I couldn't make it all the way through as this was a technical training course and not traditional college.

But as you now know, I did graduate and so the preparation for the NCLEX test began.  NCLEX stands for the National Council Licensure Examination.  The passing of this test would show that I was prepared to be a nurse.  This was a big deal where tests are concerned.  If I didn't pass, I couldn't get a job in nursing.  I'd have to wait and take the test again if I were to fail.  I needed to pass that test to get a job in my desired field.

 Studying didn't end once I graduated.  I needed to be prepared for this test, and it was of top priority.  The day I finally took the test found me with all kinds of butterflies in my stomach.  It seemed like the test took a very long time to complete.  It did have a lot of questions because it's important to make sure  the person is academically competent.  My nervousness and the time I took to really read the questions and scenarios and answer as well as I knew how made it seem longer.  Once it was over, I'd like to say that I was relieved, but it wasn't quite like that.  I honestly felt that I didn't do well on the test.  I didn't feel that I answered the questions with any certainty.

Then I had to wait to get the results of the test back.  Another classmate and myself had taken the test the same day, and we kept each other posted on whether the results were available or not.   Finally they were, and we both had passed.  And finally there was the much needed relief.

Next step: get an adult job.  I applied at several different places of course, but where I wanted to be was in the hospital.  Thanks to Crohn's, a hospital was like my second home.  And that turned out to be the location of my first nursing job.  My position was on the Telemetry unit for cardiac monitoring.  I would start out on day shift as part of my training, but my position was for night shift which I expected being straight out of nursing school.  I liked the idea that this floor was for a more specific area of health care and not just general care.  I felt like I was doing more specialized work.

What I didn't like was the craziness that the day shift could provide as patients needed to be prepped for procedures, for discharges or for admittance to the floor.  Plus, some doctors (not all) could be intimidating whether they meant to be or not.  And rude.  That could actually occur more on night shift when you had to call the doctor on call who may have been sound asleep before the phone rang.  And they didn't know (or care) that I was a new nurse and would spat out orders quickly with no desire to repeat instructions.  Also, it was hard to get adjusted to being awake at night and sleeping during the day.  My dad worked second shift at his job and one day he took me to get new shoes for work I believe.  Thankfully, he drove because I fell asleep in the truck and woke up at our destination wondering what happened.  It was like I never really slept.  I quickly felt that this wasn't the job for me.

I had another job offer during this time.  It was for a floor nurse at an assisted living facility on the same road as the hospital where I was currently employed.  The hours I would be working would be during the day.  I was pleasantly pleased with that.  I wouldn't have to deal with doctors directly in most cases as their office nurses would be my point of contact, or I would call the resident's family, and they would take care of the medical issue as they desired.  The residents didn't come and go like patients do at the hospital because they are residents of the facility; they live there.  There was a respite option where the individual just needed a place to reside temporarily maybe after an illness, and they needed some assistance until they regained their strength and could return home.  Sometimes, even those people decided to stay as they found the companionship of others comforting, and the assistance they received was a relief.

This place sounded like a less stressful option for my career field.  I turned my time in at the hospital, disappointed that I didn't enjoy it like I thought I would.  It was supposed to be my dream job, but after a couple of months, I realized that wasn't what I wanted.  I moved on to this new job and different area of nursing.  

Learning About the Other Side of the Needle

The school I was attending for a drafting certification after high school is called Tennessee Technology Center.  It also offers a course to become a Licensed Practical Nurse.  The nice part of this program in my opinion is one: it was quicker than your traditional four year program.  It would take me a year.  I would be learning specifically what I needed to know about my job as a Licensed Practical Nurse.  Two: there were no papers to write.  As much as I enjoy writing, I despised writing research papers.  It seemed like I put so much work and thought into them, and it just never got me more than a C for my final grade.  Sure, that's passing, but I'm a perfectionist and my brain didn't handle this well.   Three: if one needed to get an advanced education quickly to get a desired job, well this path would work well.


A downside to the route I took was the limitations on what my certification would allow as far as skill.  I had basic nursing skills.  Thus, job opportunities were narrowed and the salary wasn't near what a Registered Nurse would earn (nor should it be; just pointing out the down side).

I can't recall what all was required to get into the class, but one thing stands out; the interview into nursing school.  It wasn't the actual interview.  I don't recall the people doing the interview or the questions they asked.  I recall the outside events that surrounded that day.

My grandmother had passed away from a (can I say thankfully?) quick battle with cancer.  The time of illness and her death were devastating as I can say she was the matriarch of our family.  She was my first grandparent to pass away.  And she held our family together.  (We didn't just fall apart and turn against one another, but it's just one of those situations where you don't realize what you've lost until it's gone.)

My interview for nursing school was scheduled for the same day as her funeral.  The interview had been scheduled in advance and with the structure of the program, they couldn't reschedule the it for me.  Instead, we were able to set the funeral for a time at which I could attend after my interview that day.  I went to the interview with a heavy heart.  And a sense of determination.  My grandmother knew of my desires, and I felt as though watching her struggles throughout the illness and in her last days and the experiences that gave me might have helped in the interview process.  They accepted me into the class!

I also met a great friend that day who was happily expecting her third child very soon.  She would turn out to be an awesome mentor, encourager, and study partner.  She had a drive about her that my 18 years had not yet obtained.  And she set me up with my first boyfriend.  (No, he isn't the man I'm married to today, but that experience played a part in who I am today like all experiences do.)  I couldn't have made it without her.

Nursing school and my Crohn's didn't seem to be too against each other .  There were times my stomach would bother me worse than other times; particularly before big tests or performance of nursing skills we needed to show.  My nerves would be all in knots.  But I feel like I made it through the year fine.  I actually never missed a day of school (although I was late to clinical once).  I can't recall any flare ups that had bothered me like they did in high school.

School was an experience that opened me up to different people, their lifestyles, their various stages in life.  Many of the students were looking for a second career.  Many had families.  (This is where the quickness of the program becomes valuable.)  And all of us were looking to better ourselves and our futures.  The majority saw me as just a kid I think.  (Which I was.)   I didn't mind.  I felt watched over which was comforting especially after leaving high school and being so nervous about that change.  And I have never gravitated toward people my own age.  I tend to seek out those that are older than me, people who have "been there and done that".

I wish I had some awesome clinical stories, but I can't think of anything that stands out.  In general, it was all eye opening for me: bathing people at the nursing home who couldn't do anything for themselves, feeding people (I'd never done that), crushing medications to put in that food if they couldn't swallow medications well.

Starting IVs was a scary task, yet I felt able to do it with able of the times I'd been stuck.  We got to do that task on each other in class first.  It may or may not have ended some friendships.  (Just kidding.)  We all managed to do well with that.

With my age and not being married yet, I hadn't seen a lot physically as far as the other sex is concerned.  As you can imagine, my eyes saw more than I really wanted.  We'll just leave this right here to keep from being too graphic.

And I met all kinds of people in the various medical settings: hospital, nursing home, doctor's office.  I didn't realize how different people were, how differently people viewed things and how they handled their lives; so many personalities out there.

But I made it through nursing school (by the grace of God).  I went to graduation dressed in a crisp white uniform topped off with a nice hat.  I was pinned with my nursing pin and received my LPN certification ready and excited for the next step: getting my official license.

This post is less informative as far as Crohn's goes, but I hope it provides some encouragement if one is looking to go further in their education.  Next up: the big test and my first adult job!

Moving On Up

I pushed through high school with all that I had.  I was able to go to some school related events (watching sports events, attending dances, etc.) without much interference from my Crohn's Disease.  There was prom, too.  My twin sister and I were able to double date with some really nice guys.  It was an enjoyable time; even more so since I was healthy (all things considered).  And dressing formal is nice once in a while.  Of course there were lots of pictures taken. I even got my normally curly, frizzy, and rather unruly hair straightened.  The stick straight texture was so strange.  My fingers flowed right through it without getting tangled and without making the volume way too large for my taste.  The new look didn't last long, but it was nice for a brief change.

Now back to my sister:  Did you notice I said twin?  We're fraternal twins, and although we've had people tell us that we look alike, I strongly disagree.  Our husbands can't mix us up.  And we've never  been able to pull off a swap as a joke on other people.  We probably looked the most alike the first couple of weeks or so of our lives, and that was because we were bald.  But as our hair grew in and our features changed, it became apparent that she looked like our mother, and I looked like our father.  Her hair is a lighter brown (and not quite as curly) and mine is dark brown, almost black.     

I've been asked if she too has Crohn's.  No, fortunately she does not.  Our health has been as different as our personalities.  

As far as my dating life...well, there really isn't a lot to say there.  I don't believe it had anything to do with me being sick.  I'm usually a quiet type of person (except with my husband who could use some peace and quiet from me, I'm sure!).  I was even more quiet as a kid (painfully shy) and as a teenager.  I kept to myself most of the time.  My favorite place was probably at home in my bedroom reading a book.  I don't think that this way of being was influenced by my health.  It was just my personality as I would still rather be home than anywhere.  And my parents are like that as well.  We are a family of homebodies.  (Is that a word?)  Plus, I was never interested in dating just to go out and mingle with a guy.  My heart was set on finding "the one".  The one thing I knew I wanted to do, or become, after high school was to be a wife and a mother. (This would come with time)

When graduation time came, I remember feeling lost and apprehensive.  By now, I'd spent almost four years living a life with Crohn's Disease.  I was used to living with it in the surroundings and situations I was currently in .  There were people who knew of my health issues and what I was dealing with to some degree, and I felt safe and comfortable with where I was and with who I was with.  

I was a weirdo who didn't want to leave high school  What I wanted was some consistency where the ups and downs of Crohn's didn't allow for that.  I didn't really even know what I wanted to do after high school.  I'd spent so much time trying to get better physically that thinking about anything beyond the present was hard.  But I made my choice based on a drafting class that I took while in school.  I had a great teacher who desired to be the best example for his students.  The atmosphere of the class was enjoyable. So what's so bad about that you ask?  Well, my heart wasn't in the actual subject of drafting.  It was hanging on the memory of the class.  My decision was made incorrectly, and I believe that to be the case because I didn't fully understand the power of prayer yet.  If I had given it to God, He would have shown me which way to go with my future.  

But I chose my path alone.  At the time that I finally realized I had made the wrong decision regarding my future, it seemed like the end of the world; remember I had lots of anxiety.  In reality, it was just a wrong turn (or maybe the right one).  It was a detour of sorts.  God led me back to the road I was supposed to be on .  I felt the pull to go into nursing.  My times in and out of the hospital, doctor's offices, as well as being in contact with various medical personnel gave me insight from the patient's point of view that maybe others wouldn't have.  I was excited to make this change.  

Anxious Much?

Anxiety and my illness were not compatible.  But they did seem to go together.  One followed the other one.  It could have been that being sick caused my anxiety.  And then my anxiety would make my IBD symptoms seemingly worse.  It was an endless cycle.

Eventually things progressed with my Ulcerative Colitis (or stayed the same maybe?) to where my gastroenterologist at the time suggested I move up to the adult gastroenterology department.  She had prescribed all the treatments and medication she knew to try.  And she never was 100% certain that I had Ulcerative Colitis.  It still could be Crohn's Disease.

At 17 (not quite an adult legally but close enough for this situation), I said goodbye to pediatric gastroenterology and moved on to the adult gastroenterology department.  There, I met my current doctor (who had training and further education through the Mayo Clinic) as well as my colorectal surgeon.  I didn't yet need a surgeon, but it was good to establish a relationship with him in case a situation were to arise where his services were needed quickly.  The collaboration between the two doctors made an impression and helped to make a more accurate diagnosis for what I was dealing with.

I got to have yet another colonoscopy in which the two of them were able to look at the results and make a diagnosis and a plan.  My new diagnosis: Crohn's Disease.  And it was said with absolute certainty.  Yep, 3 years of Ulcerative Colitis as my named illness turned into Crohn's Disease.  The "red flags" as they put it pointed my troubles to be labeled as Crohn's.  I don't remember what those red flags were.  Maybe it was due to them seeing that part of the small intestine was affected as well as my large intestine (which we knew).  With Ulcerative Colitis, only the large intestine is involved.  With Crohn's, the whole digestive tract can be affected.

Having a sure diagnosis felt relieving to some degree.  The course of treatment didn't change much however.  There were some other medications to try, but the prednisone was still there as the first line of defense to get the active disease back under control.  This happened off and on for a few more years.

I'd have a flare, go on prednisone, try another medication, wean off prednisone, and my body knew when the prednisone was gone.  Another flare would occur not long after.  Each time this would happen, I'd have to try a new medication.  One involved me injecting myself.  (And I thought swallowing a pill was tough!)  The medication was called Humira.  It came in a pre-filled syringe.  I'd select either side of the thickest part of my abdomen or either of my thighs for the injection site.  The syringe had a trigger button that, once pushed, would set off a spring-loaded needle in the injection site.  It was shocking as it was so sudden.  And the injection burned slightly.  Of course, the first few times I did it, I was very anxious about it.  It's one of those things you can't imagine having to do to yourself.  But I managed to go through with it.  It still caused anxiety, but not as much as the first few times.

By the time I got used to that process of medication administration, it appeared not to be working.  Yet another flare up happened.  I was then put on a medication called Remicade.  This medication was introduced intravenously (every few weeks maybe?)  Anxiety was present there as it was an added item on my healthcare schedule; something I might have to miss more school for.  Plus, it wasn't cheap.  I don't know how much my parents paid and how much was covered by insurance, but at 17, I was aware of the fact that this medication was by far the most costly of all I'd tried.  But I didn't have to be concerned with that long as it didn't seem to work either.

There was a lot of anxiety with the uncertainty of the disease process: whether or not a medicaiton would work, when would my next flare up occur, what damage was the prednisone (and even the disease itself) doing to my body, how much school I would miss.  But a lot of anxiety would come from being alone.

No, I wasn't physically alone.  Many people were supporting me through prayer and emotional strength.  And of course my parents were there through it all.  But the majority of these people had not been through this particular issue that I was dealing with.  They weren't teenagers dealing with a chronic illness.  This isn't a woe-is-me story but a viewpoint that sometimes things can be made a little easier to deal with if you have that someone to talk to that has been there and done that.  They may know tips and tricks to make things easier.  They might have even come through there situation victorious which can provide hope.  At this point, I didn't have that to the extent that it would have been helpful.  That remembrance is part of what has led me to write this blog.  I have hopes of reaching someone like I was while I was sick; helping someone who's walking through the unknown.  Please, share this blog with those you know who have Crohn's Disease, Ulcerative Colitis, a chronic illness.  Feel free to engage here and ask questions.  I'm here to try and be of help and let others know that they aren't alone.