Archive for the ‘Crohn’s’ Category

PostHeaderIcon It can be lonely out here…

It has been a long, long while….. tardis distance, galaxy far far away, you get the picture. It’s been a long time to be silent. I’m sorry. It’s not like this blog has a rabid fan base, but I started a story, and every village story teller must finish the story. Why I stopped is hard to explain. My reasons changed the further I got away from it. My heart changed the longer I let it beat. But the story has not changed, and the truth (As I know it) must be told.

I am trying to do my experience justice. I have struggled since post #3. I wanted to write and continue on, but I just didn’t have the heart. I hurt to remember, to know what I learned, to know what I lost, to see what I gained. I thank God for my chance he gave me. Yet at times I hate him for the choices he put in front of me. I want this to be written, but like the petulant child, I don’t want to do the writing. I don’t want to do the homework. I find it very hard to connect my experience with people. My ego says that people cannot understand, cannot care enough for it to be worth my while. And like an ego it needs to be deflated.

I was worried that after writing it all out none of it would matter. No one would remember me for this. No one would remember this for me. I feel the pain of Nephi who struggled as he finished his record. I find it fitting to paraphrase him and hope none think ill of me for doing so. Book of Mormon, 2nd Nephi, Chapter 33

“And now I cannot write all the things which I learned; neither am I mighty in writing, like unto speaking; for when a man speaketh by the power of the Holy Ghost the power of the Holy Ghost carrieth it unto the hearts of the children of men.

But behold, there are many who will cast these things away which are written and esteem them as things of naught.

But I have written what I have written, and I esteem it as of great worth, and especially unto my people. For I pray continually for them by day, and mine eyes water my pillow by night, because of them; and I cry unto my God in faith, and I know that he will hear my cry.”

I came across the testimony of a man who did not search for god until after he had his own personal peace. He only then searched for god because realized he was not yet truly at peace. His Searching took him to many churches, many faiths, many religions. And when he found the peace he studied it, he partook of it, he spread it to others. He testified of his appreciation for receiving the “Peace which passeth all understanding” . Having felt that peace in my experience, I realized that in my arrogance, I thought that no one would understand. In my pain, I thought I could not give it to others. In my humility, I will continue to try.

Leighton Ford — “God loves us the way we are, but too much to leave us that way”

Kevin Steele

PostHeaderIcon 3. After the First Surgery… Who’s Tracee?

As you all can tell, I’ve been putting this off…  My next few entries are my hardest, both emotionally and eidetically (memories).  As before some, if not most of what I share with you will be other peoples recollections that have been shared over the last year and some more recently by request.

They performed the Emergency Surgery and I woke up on Saturday.

It’s all Fuzzy… Wuzzy had a bear, but he was hairless, wait, what was I talking about?

You know how they say “Waking Up is hard to do” (Or was that “Breaking”)?  Waking up after the first surgery was a night terror, one that I couldn’t wake up from.  I still have bad dreams about waking up like that.  It’s like bliss and then all of a sudden Atlas puts the world on your shoulders and your’e being flattened to the floor.  I am no Titan.  It is a psychological weight so heavy that you feel it.  You know those advertisements that use the phrase “Depression hurts”, I don’t remember waking up hurting, I remember waking up broken.

Of all the stupid things I could have worried about at that time, the first words out of my mouth were “Call Marco!!!”.  Now Marco is a wonderful guy, and had been my manager for the last 10 months.  I was sure I was losing my job, my benefits wouldn’t cover this, my body had failed me, I had failed my family (By having Crohn’s, how stupid is that – And yet I still suffer from that thought daily).  I had to stay there, with a ventilator on and whisper thinsg.  I saw my world crashing around me.  Mostly it was an emotional crash, but I physically crashed.  I lay there feeling broken in body and mind, and my spirit was… well I thought it was in the same boat.

To Quote my Parents: “Sunday afternoon, for whatever reason, you came out of sedation enough to gag on the breathing tube, and pulled it out. The doctors had hoped to keep you sedated till your second surgery on Monday, but now you were awake and struggling, frantic. You were overwhelmed by what had happened to you, having missed two days of your life, and were extremely concerned about the immediate future. What was going to happen to you. Would LANDesk fire you because you were so sick? Would insurance cover the cost of hospital and surgeries? How would you be able to meet your family’s needs? We and others assured you that companies typically didn’t work like that, that you would be ok with employment and insurance, but it was difficult to tell how much this reassured you or not.”

You just need to calm down…. HA!

I had been through some tough times and during my surgery my doctors had Resuccitated me twice.  I didn’t find this out until a month or so after being released.  I was “Circling the drain” as my surgeon so kindly put it.  With all the stressors, I was focusing on the “here and now” and not the “what had just happened”.  Some people thing that might be my pragmatism kicking in, but I think it was my pessimistic side.  Lucky for me I was a moron and I had  pulled my ventilator tube out.  This meant that the doctors woudo delay the surgery to let my throat “heal” before they could re-insert the tube .  So in the meantime I had to calm down.  I had a day to think about everything, give up and leave everything in everyone else’s hands.  You know what does come clear, how mad I was, frustrated at my circumstances, my curse, my crohn’s, my bad fortune, even the people around me who were trying to help.  I was blinded,  I’m sorry for my foolishness.

Sunday things were different I had had time to think, and while I was still in bad shape, I felt more calmed.  I had time to reflect on the things that had happened to me and my experiences over the last few days.  I also had time to remember that something wonderful had happened to me while I had been in surgery.  My mother was there and I got her attention.  The attending nurse helped me speak by lifting up one side of the breathing mask a little.  In as softly loud of a voice as my wracked wind pipe could muster I told my mother “Mom, I saw Tracee Thomas, and she wanted me to make sure her mom knew that she loved her.”  The was the extent of our conversation since they wanted me to be rested and stable for the operation.  My mother left shortly after.

Who is Tracee Thomas?

In many ways the correct answer to this question is “I don’t know”?  Carol and Ernie Thomas have been our neighbors since we moved to American Fork, Utah my senior year of high school.  I knew their son James and their daughter Susan, but even then they were older than me and I only knew them in passing.  I wasn’t aware of it but they had more children and one of them was a daughter Tracee and she had passed away on Wednesday.  When I was down during the first surgery I met Tracee, having never seen her before I new who she was, and all she did was tell me to let her mother know that she loved her.  How much that has changed my life.  It’s a short intro but I’ll cover it in the next post.

PostHeaderIcon 2. Before the first surgery

I get the feeling this post is going to be very short.  Truth be told I don’t remember much about the before and after of my first surgery.  Please understand I’m sharing this from my year old memory of a set of moments that came and went in a pain and medicine induced haze.  ALSO- If I get some of this wrong, let me know with a and I’ll approve it and then make an Editorial change with all of them.

Rush’n Attack:

From what I’ve told, Nathan got us to Timpanogos Regional Hospital in record time.  I can only imagine him using the speed and care of a professional Rally Car driver.  He’s crazy good like that.  😉  I on the other hand was in the back seat ready to go to sleep with Kaylene in the front passenger seat keeping me awake and out of shock.  I’m pretty sure I wasn’t sleepy, it was the shock.   Either way i think we got there in record time.  Thanks Nate!

Sorry, George Clooney already finished his shift:

When we got to the ER they got me inside, not sure if I walked in or what?!? I know the nurses could see I was in bad shape and they rushed me back into the ER.  They tried to get my blood pressure 3 times with no success.  Kaylene tells me they pumped me full of IV fluids, and then turned me upside down!  My blood pressure at that point was 55/22.  This is below any sustainable level.  When blood pressure is too low, the first organ to malfunction is usually the brain.  Needless to say I scared some people.

Interlude:

One morning, Kevin wakes up to find his dog dead, lying next to his bed. He can’t quite believe it, so decides to take him to the vet. The Vet takes one look at the dog and says, “Kevin, I’m truly sorry, but your dog is dead.”
“No. He can’t be dead. I demand a second opinion!” replies Kevin.
The doctor nods and agrees. He goes into the back room and brings out a cat. The cat jumps all over the dog, bites it, looks at the vet and says, “Meow.”
The vet again says, “I’m sorry but your dog is truly dead.”
Kevin says, “No!, I don’t believe it, I want another opinion.”
The vet nods and brings out a Labrador Retriever, which then begins to jump all over the dead dog, tugging at it before barking, “Woof roof woof!”
The vet says, “Sir, your dog is dead. That will be 400 dollars.”
” to tell me my dog is dead?” asks Kevin.
“Well,” the vet replies, “I charge 50 dollars, the cat scan is 200 and the lab test is 150 dollars…”
Back to reality… kinda:
I had received a CAT scan a few weeks before this incident when I was experiencing my previous pains.  With the horrible blood pressure reading of 55/22, they rushed me in and performed another one.  The Radiologist looked over the CAT scan films and told my wife that they weren’t sure what was wrong since My cat scans were showing ok.  She left and came back, maybe 15 minutes later, ready to rush me into surgery.  This fine doctor had made a human error and was looking at my CAT scan results from the previous scan two weeks before.  I was bleeding internally.  My bowel (Large intestine) had ruptured and was spilling into my body cavity.  I was in Septic shock and my Liver and Kidneys were also failing.  All around I was a huge mess.
Some of what I can tell you here is what I remember, some is what i’ve been told, and some is what I think I remember telling people.  Out of all this I can only truly remember the following things.
  1. Stumbling to the car
  2. Me wanting to lie down in the back, and my wife kept talking to me to keep me awake.
  3. 4 seconds of walking from the waiting room through the doors into the ER.
  4. Wheeling to the CAT scan
  5. The Doctor telling us that my Kidneys and Liver were failing. ( This stands out most)

And there is part 2.

PostHeaderIcon Crohn’s and Me!

WARNING:  Since my experience in the hospital and going along with my Crohns, I no longer have a TMI (Too Much Information) filter when it comes to bodily functions/malfunctions, Hospitals, and other possibly gross things.  I don’t mean to offend anyone if what I say sounds gross – SORRY!!

In 2004 I started having some health problems, including bleeding from places I wasn’t used to bleeding, pooping a TON, and losing weight without even trying.  Since then I’ve heard the question “What diet plan are you on” like 50 million times…..  Trust me, you don’t want this one.   After a fun process, which would include a Barium X-Ray (YUCK), and the first of three colonoscopies before I was 30, was diagnosed with Crohns disease.

My wife has been my help and support through all of this.  The days where I couldn’t even get out of bed, or the ones where I spent most of it on the toilet.  The days where I would drag myself to work white as ash, and just muddle through.  All the while worrying about what would be next.  My life is a unknown factor because of my Crohn’s, my future is unknown, my ability to finish my work on a daily basis, whether my kids will have crohn’s is a big unknown for me too….  A lot of things to be worried about with all the other things.

My wife, family and friends have been there for me, supporting me, supporting Kaylene when I was down and out, offering help, suggestions, prayers, and blessings.  Thanks to all of you who helped, supported, even those of you who just sat there and listened to me.

Things You might not know about Crohn’s disease:

Where does Crohn’s affect you?

Crohn’s disease is an -ONGOING- disorder that causes inflammation in the digestive tract, but as one of my Baylor friends, and my first fellow Crohn’s-ian told me, this affects you from “Gum to bum”.  It more commonly affects the section where your Small and Large Intestines connect, called the ileum.

What can you do about it?

There are many ways to treat Crohns with methods ranging from Western to Eastern Medicines.  My approach has been mainly Dietary with monitoring,  and some Medications.  Options include, but are not limited to…

  • Medicine’s
    • Pentasa (5-ASA for reducing the recurrence of inflamation) – I started on this 16 pills a day – NO FUN!
    • Imuran (Immuno-suppressant to maintain an overactive system) – Currently at 150mg a day  🙂
    • Prednizone (Steroid for Inflammation) – Not my recommendation unless you are a sever sufferer.
    • There are others such as Remicade, but I have no experience with them
  • Diet
  • Acupuncture
  • If you know of others, please feel free to post in the comments.

Possible Genetic Factor:

About 20 percent of people with Crohn’s disease have a blood relative with some form of inflammatory bowel disease.  In my case I know I have an Aunt (Love you Penny) and a cousin with Crohn’s, and my little brother deals with Ulcers (Shout out to Dallin).

Common symptoms of Crohn’s disease:

  • Abdominal pain
  • Diarrhea
  • Rectal bleeding
  • Weight loss
  • Intestinal ulcers
  • Arthritis
  • Skin problems
  • Fever

Common Misspellings:

Chron’s Disease, Croan’s Disease, or Crone’s Disease (No, this is not an old ladies disease)…..


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