A New Hope and A Shattered Hope

Road Sign with Hope and Sky

[headline_arial_small_centered color=”#000000″]There Is No Bad Day[/headline_arial_small_centered]

[headline_tahoma_medium_centered color=”#000000″]Life Saving Love[/headline_tahoma_medium_centered] 

During this increasing turmoil, our extended family and friends responded graciously and amazingly.  People started showing up with food almost every day, removing the burden off Nan’s shoulders to prepare each meal for the kids.   Then my parents drove in from eight hours away and stayed with us for days to help cook, and clean, and take care of the kids.

After they left, Nan’s mother flew into town for over a week to help.  She took time off from her teaching job and hired a substitute so she could help us.  What a life saving blessing they offered us.  We can’t express how thankful we are for all the loving help in that crazy time.

Just to have them there to talk to, pray with, and commiserate with was an enormous help emotionally for both of us.  But the physical help of going to the store, cleaning the house, doing laundry, and cooking food was equally rescuing.  All the little things in life that are quite manageable with two healthy parents to divide and conquer, suddenly become an insurmountable and overwhelming challenge when one of those people is removed from the ‘helper’ side of the equation and placed on the ‘needs help’ side.  Looking back I’m not sure we all would have survived, literally, without the compassionate, selfless service of our family and friends.

[headline_tahoma_medium_centered color=”#000000″]A New Hope[/headline_tahoma_medium_centered]

 

Road Sign with Hope and SkyThe blood in my stools had returned and along with it came new pains.  So much for the steroids fixing everything!  However, my undesired companion for two months, the burning tight butt pain, had gone away entirely!  And it did not leave unnoticed, believe me.  I was enormously grateful to bid it farewell!  Now I only had burning in super short spurts during bowel movements.  Unfortunately, in its place came intestinal bloating, periodic blood clots, extreme fatigue, accelerated weight loss, and moodiness.  Hmmmm…not sure I like how this bargain is weighted…but I’m glad the all night tub sessions are over!

Clearly neither the SCD nor the drugs were resolving my problems.  There had to be something else I could do!  I kept searching.  On October 9th, I got “The Maker’s Diet” By Jordan and read most of it that day and the next.  It gave me new hope and new motivation (and it gave my wife the burden of a new shopping list to acquire ASAP).  Essentially, Jordan tells his inspirational story of having had severe Crohn’s disease and at 6 feet tall getting down to 104 pounds at one point and very near death.  At which point he found a mentor who guided him in implementing a whole food based, healthy diet that helped him completely recover and heal from Crohn’s disease.

I’m a believer, sign me up!  I need those results, and I’m willing to try anything!  Very similar to Elaine’s recommendations with the SCD, I resonated with the logic in it.  So I made a few tweaks to the SCD, not many, and implemented his recommended diet.

Hopeful and optimistic again, I believed this could be the ticket and that Jordan’s recommendations in combination with the SCD would somehow help me recover and get off pharmaceutical drugs completely.

Once again I noticed slight improvement right away.  For the next few days my weight stabilized, and I even found the energy to get out of the house a couple times.  All physical exertion still highly taxed my system though and sleep would overtake me.  And the burning and urgent bowel movements still came on so quick they often filled my diaper in bed before I could even think about getting up.

But I still felt things were improving slightly, and I held onto that glimmer of hope tightly.

Nan wrote this to our family on October 13:

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From: Nan Kennard
Sent: Saturday, October 13, 2012 9:41 AM
To: (Family Group Email)
Subject: Update on Aaron

Hi All,
Thanks for all your prayers and positive thoughts for Aaron. We have definitely felt your love and God’s watchful care these past couple of weeks. We have had many tender mercies from the Lord and I know He is mindful of us.

Last week after a sleepless night of pain and dehydration, and after a few hours in the ER, some IV fluids, and blood tests the Dr. there said she would admit him to the hospital if I was feeling too overwhelmed by it all.  They could keep him on IV fluids and give him drugs that would let him sleep OR we could just go home and keep trying to hydrate and rest in bed. Aaron really did not want to be in the hospital alone on drugs and hospital food and I didn’t want to leave him there, so we opted to be released and come home.

Mom and Dad Kennard came out the next day and stayed for the weekend. They helped with cooking, cleaning, entertaining kids, cleaning the yard, and fixing things around the house (thanks, so much Mom and Dad!) They also drove Ali back to Utah with them and she is staying with Emily and Ashley for a couple of weeks until Dawn drives her back on the 18th.

This week, Mom (Alyson) has been here helping with cooking, cleaning, organizing baby clothes, entertaining kids, and shopping as well. It has been SO nice to have the help and has really boosted moral in our home. I’m a little anxious about how I’m going to do it all when Mom leaves, but I keep thinking optimistically and am hopeful that Aaron will start improving and he will be able to get out of bed more and feel better.

The Dr. put Aaron on a pretty heavy dose of immunosuppressant and steroid drugs right now in an effort to reduce inflammation and stop his immune system from attacking his intestinal wall. He has never been a big fan of prescription drugs but is following the Dr’s suggestions while also trying to fix his diet and remove anything that may be fueling the fire. His diet consists of well-cooked veggies, chicken and beef stock, and a little meat. No grains, legumes, or sugars, and very little fruit. Before this flare up started a month ago he was a healthy 178 lbs, running 60-90 minutes a day and feeling great. Now he is 153 lbs and his daily exercise consists of waddling to and from the bathroom. He was able to stand up a little bit more this week and last night we actually went on a “date night” to Whole Foods to get a new probiotic supplement and some foods to try. He made it to the vitamin aisle before he had to sit down and go back to the car. He is very weak and just cannot stand for very long.

We have been working closely with a nutritionist who cured her own Crohn’s disease through diet and she is trying to help us get Aaron’s diet dialed in. Over the next couple of weeks we also have appointments with a few more Dr’s to get some more blood work and second and third opinions. We want to be sure he has the correct diagnosis and also get some opinions about which drugs and diet are best for treating it.

Things to be grateful for this week: Aaron’s weight seems to have stabilized (not much loss this week) and his appetite is improving. Visits from Grandma Suzi, Papa Duck, and Grandma Evans have lifted our spirits and been super helpful and comforting. Abe seems to be doing a little better with his attitude and communicating better about his feelings (he was SUPER stressed out and sad a few weeks ago.) Breanne is a little angel and helps me SO much. Ali is having a blast with her Aunts, Uncles, and cousins in Utah (THANK YOU Emiy and Ashley!) Kelsie is growing well and is a happy, pleasant baby. And last, but not least, we have SO many loving family and friends who are pulling for Aaron and praying on our behalf. THANK YOU!!!

Love,
Nan

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There was hope!  Things had to start improving right?  We were doing everything possible.

[headline_tahoma_medium_centered color=”#000000″]A Shattered Hope[/headline_tahoma_medium_centered] 

That same day, October 13th things took a turn for the worse again.  Here’s a snapshot of that day from my journal:

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230a – sudden diarrhea in diaper in bed, came fast as I woke up in bowel pain       

1230-7a – slept only intermittently between waves of bowel pain and burning all night.  Still probably got 4+ hours sleep

7-7:30a – super intense 4 phase bowel movement, very exhausting

7:30-8a – had to go lay down again after pooing I was so exhausted, it was like a 30 min workout.

9a-1:30p – took half a Percocet because of severe bowel discomfort.  Then slept soundly the next 4.5 hours.  Emotionally i feel a bit drained.  I am kind of in a state of shock from the intense poo session this am and I don’t feel like moving anywhere or eating anything but probably should.

4p – 2 phases of soft liquidy stuff, no blood that I can recall.

2-7:30p – Up and out of bed for the afternoon.  Mostly sitting though.  I got up to eat, take a shower, etc.  It was always uncomfortable to move around, but it felt good to be out of bed.  Went to the store with Nan and Abe, waited in car lying down, then I went and got a haircut while waiting.

Feeling not super positive, but not bad.  Feeling glad to be outside in the fresh air.

8p – 2 phases of soft and liquidy stuff, no blood, kind of painful at end.  Lay in tub for 20 min. after which was very soothing, lots of gas came out.

10:30-6a – slept deeply through the night, waking up once in the middle.  I took 1/2 Percocet at 10:30 and 1/2 at 2:30a and that allowed me to sleep without pain.

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I now required pain pills to sleep at all; the bloating in my bowels now too intense all the time.  And the next morning the scale display read 148.2.  “NO!!! I thought things were stabilizing!  That’s the wrong direction.  It’s OK.  Stay calm.  Something’s going to give.  It’s going to turn around, these things just take time.  I need to allow time for the diet and drugs to do their thing.”

I calmed myself down, and was able to enjoy much of that Sunday, being with my children, and even playing a board game with my son as I propped myself up on my side in my bed in the living room.

Then at 2 AM the next morning I woke suddenly to a major urge for a bowel movement, and barely a moment later it all came bursting out right there in bed.  Here’s my journal entry description:  “Massive quantity of dark blood came out in bed and got everywhere, no possible way to contain in a diaper. Huge Fist sized blood clots came out, about an inch thick in a big huge section. As I stood at the toilet, bright blood just started pouring out my butt onto the ground.”

I actually took pictures of the clots that came out, to show the doctors if needed.  I’ll spare you those visuals.  But they were humungous blood clots that had come out in my diaper and had burst out a two foot diameter circle of blood on my bed.  The biggest of the blood clots had a strikingly similar look and size to the placenta Nan had delivered just a couple months prior.  “What is going on!?!!  This is freaking me out!”  The blood loss, the blood clots, the increased pain and bloating.  I didn’t know who to talk to.  My GI Doc just kept saying the same thing – take more drugs – and I had lost all confidence in him.  This was worse than ever, and I had been following his advice for nearly two months now!  I need a new Doctor!  I felt a desperate need for another opinion.  There had to be something else wrong, or something else we could do.  The drugs weren’t working.  The diets weren’t working.

The truth stood fully exposed, glaring me right in the eyes.  I could no longer deny and convince myself I was healing.

I was dying.

 

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