Living Another Normal

It seemed like I had been in the hospital for a long time and yet, not long enough.  I really wanted to go home and sleep in my own bed surrounded by my own things and with a much better chance of quietness.  But I was a little apprehensive to go home.

I had this ileostomy bag to care for now.  I would have to empty it and change it when needed without the assistance and supervision of the medical staff that had been with me.  I would have to start ordering my own supplies.  I'd have to start living with this outside of the hospital.  I felt unequipped for this.  It's like how I felt about taking my newborn son home from the hospital, but to a lesser degree.  (Taking care of a little human is way more challenging.)

The what-ifs played games in my head.  Mostly, I heard "what if I can't care for this ostomy appliance correctly, and it leaks often?  Who is going to help me figure it out?"  I had to realize that I didn't know it all yet, and I couldn't.  I still don't.  But I was well prepared.  My confidence was just lacking a bit.  I could, and would, deal with this new way of life.  But not on my own.

The hospital sent me home with a small amount of ostomy supplies until I could get set up with a company to provide me with the items I needed.  The hospital provision included the clear ostomy bags they use to be able to see what the patient's output looks like in color and consistency.  Those were not my preferred type.  I didn't really want to see my output that much.  I was glad to use those up.

As far as getting my supplies, I started out using a local company to get my supplies and after a while I found ordering online to be my option of choice and went with a company who provided that option.  That way I'd have the item reorder number in the order history of my account and could type in the amount I needed and reorder easily.

Fortunately, in this day and time, the internet is available.  Although it can provide too much information sometimes, it was of help when looking up things ostomy related.  There are people who are comfortable enough to share their experiences with changing their ostomy online.  That can be a big help to a new ostomate who just needs to see how it's done on someone who has actually been there and done that.

Also available is phone access which I used to make an appointment with the Wound Care Ostomy Nurses not long after I got home.  My fears of my wafer leaking and not being able to figure out why were real.  I'd put on a new ostomy appliance with the help of either of my parents as I was still sore from surgery (having support from others who can bend and see what's what was great) and scared to go it alone.  Sometimes we'd have success.  But mostly we seemed to have leaks.  Success in my book would be the wafer staying in tack for 3 full days (now more like 5 days).  In the beginning though it was more like 24 hours or less.  This was so frustrating.  My confidence in the decision of surgery was fading.  My skin was getting sore, red, and irritated like bad diaper rash due to the frequent exposure of stool and moisture as well as the frequent removal of an adhesive substance.  And around the stoma, I'd have this paste (basically a caulking type substance) that would come off easily with the removal of the wafer after about three days wear, but with 24 hours or less, it was still fresh and rather sticky and gooey.  It was a pain to try and remove and would further irritate my skin.

Upon examination by the ostomy nurse, and after explaining the complications I was having and providing the supply list of items I was using during the changing process, she quickly knew what my biggest issue was.  I had been using a cleanser that was given to me at the hospital to use around the stoma.  She took the cleanser and sprayed it on the back of her hand and lets it dry.  She then took a clear piece of Scotch tape and places that over the sprayed area.  The tape stuck to the area very poorly.  Although the cleanser may have been good for cleansing, it wasn't helpful in allowing me to have a good seal around my stoma.  The wafer would pull away from the skin and cause leaks.  She said to just use warm water and a clean cloth to keep the area clean.  No soaps neccessary.  That seemed unclean to me.  But when it comes to changing my ostomy appliance, my biggest lesson I learned is that less is more.

Eventually the routine of changing my ostomy appliance fell into place, and I even became confident enough to go at it alone.  I learned what worked for me and what didn't as far as products and procedures go.  I learned what foods didn't agree with me; pizza and spaghetti were back in my life!  However, bubble gum and chewing gum produce too much air and would make the ostomy bag balloon.  That was a strange experience.  There really wasn't that many limitations to what I couldn't eat (besides chili causes too much stomach pain so I don't eat that but in very very small amounts, if at all).  The limitations are more on how I eat; not eating a whole container of almonds, steering clear of apple skin (which I don't like much anyway), chewing well is big.  Getting that food in as smooth a form as possible is important to prevent obstructions which could lead further sickness, hospital stays, and maybe another surgery to relieve the obstruction.  I also try to eat my last big meal of the day by 6 pm on the night I plan to change.  I like to change before bedtime and this allows the food to digest well before me changing to keep the stoma from being so active and causing a mess.


Life didn't go back to pre-Crohn's Disease.  It couldn't.  My colon was gone.  I have this ostomy appliance to wear daily and keep an eye on.  But it gave me back a life to live without prednisone and medications that didn't help.

I Think I Can

I just had major surgery (an ileostomy), and I was in some major pain.  After examination of my bandages, it looked like I  had one larger size incision (the one I assume was used to remove my colon) and a few smaller incisions (probably for cameras and instruments?)  But regardless of how large or small or the number of incisions there were, my whole core felt like one extremely sore muscle.

Now I was thinking after this event that I've just been through that I might get to rest.  For one thing, I thought there's no way I could get up out of bed.   Like I said, I was hurting.  But there is no rest in the hospital as we know due to blood pressure checks, blood draws for lab work, and of course, all of the various medical staff checking on me (it was Vanderbilt Medical Center after all; a teaching hospital).

But I had to get up.  Doctor's orders I guess.  And I would take this challenge.  The very next day, they had me sit up in bed and swing my legs over the side of the bed.  That seems like an easy task, and it is normally, but I just had my guts removed.  Things were moved around in my abdomen to be able to get to my colon, and my small intestines were rerouted.  I was adjusting to being on Morphine to help control this pain when I hardly ever normally take Tylenol.  How was I going to be able to do this?  One painful movement at a time.

I raised myself up in bed (or so I thought), but I was not budging because all of the soreness was stopping me.  However, failure wasn't acceptable.  The staff were insistent that I had to do this.  It's important to move to get that soreness worked out.  Well, I did just that.  The moans and groans and whimpers I produced somehow helped me get into a sitting position on the side of the bed.  I had to sit there for a while just to gather myself because it hurt so bad!  Once I was ready to stand, I had issues more with sea legs than I did with all of the soreness.  But I was eventually walking the hospital hallways.

Now to learn to care for my new constant companion: my ileostomy.  This was scary for me  It was such an unnatural process.  I had to empty this bag on my side as it became full.  But what was "full" where this was concerned?  And how do I get things cleaned after emptying?  How do I even empty the bag??  Wound Care and Ostomy Nurses to the rescue!  Now there were certain things they showed me to do that didn't work for me.  But they gave me the basics to build off of.

Emptying the ostomy bag felt strange at first but quickly became the new normal.  I learned to cuff the end of the bag for easier cleaning.  The end where wastes would exit was folded back, and I could wipe that end off a couple of times and fold the cuff back down into it's original position.   (For a better idea of what I'm describing, I added a picture of a folded cuff on a shirt sleeve above and a picture of my ileostomy appliance system below.  Hopefully this helps the visual effect!)

And then there's a matter of changing the whole system.  Above, you see a wafer (the square piece), the ostomy bag (which attaches to the wafer by aligning and securing the circles on each piece) and the clip which goes at the bottom of the bag to keep it closed and to keep wastes inside until time to be emptied.  (There are closed bag systems and other variations of the above picture, but this is similar to what I use.) 

Definitely changing the appliance was more nerve wracking than emptying the bag.  There's more detail needed.  In the beginning, I had to use a wafer where the small circular opening had to be cut according to how my stoma measured at the time of changing the appliance.  This was because, after surgery, the stoma is larger than it will be after the healing process.  So for a while, I had to measure with a pre-cut guide provided by the ostomy manufacturer to see what size my stoma was and cut the opening as best as I could to make it fit securely.  Once that's cut, I would apply a product called ostomy paste which isn't a paste so much as it is a caulk used to fill in gaps and seal areas (much like the purpose of caulk used in housing and construction).  The cutting and caulking process is done before actually removing the old appliance as the stoma can become unknowingly active (as there is no feeling in the small intestine).  The activity of the small intestine can't be controlled. 

After removal of the old appliance, I had to clean and thoroughly dry around the newly surgery-induced tender area.  And then I had to get my new appliance on .  

Now this sounds like it was just me and the nurse participating in this.  But it wasn't.  My parents were learning with me.  I was glad.  Because I was very nervous about taking care of this "thing" on my own.  They were ready and willing to participate in the process when changing time came.  We were able to work through the process together.  Because not only did I have to care for the appliance, but I also had incision wounds to care for.  One was deep and needed to be packed with clean bandages. Again, not something I had ever done before.  So we would learn together, and they were right there until I was ready to go solo (much like riding a bike without training wheels).  Having support from others makes healing a lot easier.

A Miracle, A Victory

I wanted to change things up some with this post, and show a different style of writing and a source of release for those things that seem to boil up inside and need a way out.  This was written by me in 2008 as a reflection from the months prior when I was struggling with the ups and downs of my health due to Crohn's Disease and then finding relief from having ileostomy surgery.

We didn't know what was to come.

Our hearts were broke, our bodies numb.

Tears were shed.  There was loss of sleep.

Prayers were prayed and eyes would weep.

Pain was bore and hopes were choked.

It seemed our faith had finally broke.

We struggled and wondered was it to be.

A miracle, a victory.

But prayers were still prayed and eyes still wept.

For a glorious day that would be kept

Close to our souls, God's presence bore.

Pain was soon to be no more.

The changes that came brought things to view.

Life so old was made brand new.

In our hearts we'll forever see

That miracle, sweet victory.

Butterflies and Bandages

Let me lay out this example of how I was feeling pre-surgery, the day of the actual event. You know that new date feeling...the one where you might be scared enough to consider backing out of the date (or maybe you actually do) because you just don't think you could go through with it? Or you're so

nervous you feel like you could get sick because of those butterflies...thousands of them flying all through your body?

The day had come: surgery day. And I was first date nervous. I mean, they were about to take my colon! I'm fairly certain we had to be at the hospital at the crack of dawn only to sit around and wait. (And my wait time would be nothing compared to my family and friends that were there for support.)

At one point they called my name, and my heart skipped a few beats because I was so nervous about everything. But it turned out that they just wanted some money up front (my insurance copay). That actually caught us off guard. Somehow, we missed this detail. And they said we were notified prior to us coming to the hospital so we'd be prepared. Fortunately, my parents had it covered. I think they would have sent me home if they didn't get their money. That didn't help my nerves any.

When they finally called me back for the actual surgery, it was a battle of overcoming fear and making an adult decision to be brave even though I just wanted to be a little girl and go running back to my parents. I mean, they were removing an important part of my body. But this surgery was my chance to get my life back, to be rid of the pain and instability that Crohn's had me trapped in.

We get back to the pre-op room, and there are a couple of things that stood out to me as I'd never had either of these experiences in the hospital before. First was my IV insertion. Yes, of course I'd had an IV started before. Many times. So many times, I think I could have started my own if I needed to. What was odd with this insertion, what seemed completely unnecessary to me was them numbing the vein they chose to stick with a lidocaine injection. Yes, I was stuck to be numbed up before being stuck again. They did it twice because they missed the vein when they tried to start the IV the first time. It seemed so useless, and I found the lidocaine to burn. I had more pain from the lidocaine than I would have to have just had the IV started like what was normal for me. I just say start the IV and forget that numbing part. I had enough injections that I think I could handle it.

The second aspect of pre-op that stood out was the large purple suit they put me in called Bair Paws. It hooked up to a machine that would blow warm air into the suit. It was awesome! My body went from a crispy cold surgery room temperature to warm and toasty in no time. I wanted to take one home.

While I was back in surgery, my parents were in the waiting room. At the time, I couldn't possibly understand the turmoil they must have felt sitting there waiting. As a parent now myself, I'm starting to get it. Our son had to have tubes put in his ears at around a year old. It's a quick and routine procedure, but when it's your baby, the procedure might as well have taken days because it seemed to take that long to me. I don't know how long my parents sat out in the waiting room. I do know they were very grateful for the kindness of others to be there in their time of need.

When I woke up in recovery, the first thing to hit me was the pain. I was very groggy still of course, but I remember them handing me the control for the morphine. It was not something I would normally have wanted to take, but after having this surgery and the pain I was feeling, I wasn't turning down some relief. I also remember sliding my hand down my stomach to see if I actually had an ileostomy bag. I guess in some ways I hoped a miracle might have occurred and that my colon was still in my body. It wasn't because I felt the lump on my stomach from the ostomy bag. Plus, why would I have been in so much pain right? I finally come to myself enough that they start rolling me out of recovery. We go through these double doors and there's my mom. I don't know that I'd ever been so glad to see her in my life! It finalized that I had made it through surgery. It wasn't a dream. So far, so good. Next step: recovery from surgery and learning my new way of life.

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.