Life Without A Colon

It’s been three weeks since John’s ileostomy and we are adjusting to his new (hopefully temporary) lifestyle. As the stoma nurse put it, his colon has been put on holiday for awhile (she guessed about six months) until his rectum heals from the two surgeries. That means that for now, all his food is passing through his small intestine then exiting his body through an opening in his right side called a stoma. There is a sealed bag around his stoma that has to be emptied several times a day. He must add extra sodium and potassium to his diet and drink lots of water to make up for what is not being absorbed by his colon. For the time being, he also has to avoid certain foods that might increase the risk of a blockage which could land him back in the hospital.

He doesn’t have a lot of energy these days but he manages to make it up and down the stairs at least once (sometimes twice) a day and he is able to walk to the bathroom and kitchen table for most meals. He has even been able to sit at his desk for short periods of time, allowing him to catch up on some work. He has a post-op appointment with the surgeon next Friday, so hopefully by then he will be ready to be out and about.

He definitely lost weight in the hospital; he’s about 20 lbs. thinner than he was before the surgery. He has not lost his sense of humour though. This morning one of the kids did something that made him laugh so hard it made his incision hurt. He’s glad to be home, glad to be alive. He asked me to write this update just to let you all know that he’s doing ok and to thank you once again for your prayers and support!

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2 Replies to “Life Without A Colon”

  1. Leanne and John,
    I have been following along with your progress, and praying for you along the way. Just wanted to write a quick note of encouragement that as John continues to heal, there are many praying. Praising God for His faithfulness in these days following the surgery!

  2. Poopuri will be your best friend with a stoma! Just spray it wherever you empty the bag and it helps a lot. Also eating marshmallows before you change your bag helps slow things down a little so it’s not as messy! Good luck!

Home!

John is back! He came home from the hospital this afternoon.

His body still has lots of healing to do, but I’m glad he can do it in the comfort of our own home now.

Somehow we survived the past two weeks, but I couldn’t have done it alone. To all the people who brought us meals, babysat our kids, or visited John in the hospital, I want to say an extra special thank you! The words of Matthew 25:34-40 ring true: “I was sick and you visited Me [with help and ministering care]” (The Amplified Bible).

This blog has readers from far and wide who faithfully pray for us and send us encouraging messages. God often used your words to speak comfort and hope to me when I needed it the most. So thank you.

Our journey isn’t over yet, but tonight I am filled with gratitude as I look back at how far we have come.

“The Lord is good, a stronghold in the day of trouble; He knows those who take refuge in Him.” Nahum 1:7 ESV

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Day 11

Today was John’s eleventh day in hospital. Since the last time I wrote, he has been slowly recovering in the surgical ward. He is still working on strengthening his lungs with the spirometer. He still hasn’t been able to produce a real, strong cough yet, which is concerning. He also had a mild fever at one point last night. Because of these concerns, they are going to do another CT scan on him tomorrow (Sunday).

On the positive side, his ostomy started working so he was allowed to start eating again on Wednesday. After not being permitted to eat for a full week (since 11 am on October 29, to be exact) he is slowly regaining his strength. His hemoglobin levels have improved but are still on the low side. He feels quite exhausted but the pain is manageable. He’s no longer on intravenous drugs for that but is able to take oral painkillers as needed (which hasn’t been very often the past couple days).

Obviously, recovery will take some time. Unfortunately, no one can tell us exactly how long it will be until he can come home. Aside from the above-mentioned concerns, they also want him to regain a little more mobility before he goes home. He is able to get up and sit in a chair for his meals but hasn’t had the strength to go for a walk yet. The physiotherapist was hoping maybe by Monday he will have improved enough to attempt that.

John’s sister told me that her kids were asking when Uncle John will be able to come home. When she said we don’t know yet, one of them stated confidently, “God knows!”

I couldn’t have said it better myself.

“Are not five sparrows sold for two pennies? And not one of them is forgotten before God. Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows.” Luke 12:6-7 ESV

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Breathing

The past couple days have brought a few small changes. John has been working with the physiotherapists on sitting up in a chair again. It gets a little bit easier and he’s able to tolerate it a little bit longer everyday. Today they removed his nasogastric tube. Late this afternoon they moved him up to the surgical ward, so he is no longer in the ICU. That’s progress!

The only concern the doctor had was with his lungs. Due to the pain and tenderness from having two surgeries, he is having trouble taking deep breaths from the bottom of his lungs. It hurts too much. Breathing only from the top of his lungs puts him at risk for pneumonia so he really needs to get those lungs working at full capacity again.

The ICU doctor brought this fun little game for him to play (a spirometer). The goal for him is to keep the balls up by inhaling nice deep breaths.

Other than the breathing issue (please pray for that), the surgeon said he is doing fine when he checked his incision. John still isn’t allowed to eat or drink yet (ice chips are the highlight of his day) but maybe tomorrow he will be given the ok.

“The Lord gives His people strength. The Lord blesses them with peace.” Psalm 29:11 NLT

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  1. We continue to pray for John and all of you! It’s wonderful to see God encourage you and keep giving you peace and joy during this awful storm. What an intense surgery and recovery process! Thank you so much for the updates. Please Father God continue to encourage and comfort the entire Clark Family, and please fully heal John and protect him from pneumonia we all ask in Jesus’ name. Here is a Psalm God brought to my attention today:

    Psalm 121: “I lift up my eyes to the mountains— where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The LORD watches over you— the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.”

Stable after second surgery

This morning I found out that John was going under the knife again. His condition had not improved and they suspected there was some intestinal leakage. I know many of you were praying at church this morning while the operation was happening. What perfect timing! I am so grateful for the outpouring of support.

The surgery went as well as expected. There was definitely some leakage and old blood from previous bleeding that needed to be drained. The surgeon de-functioned his rectum and gave him an ostomy. There is the possibility that an abscess could form so they will need to watch out for that. He’s back in his room in ICU B. He now has a PCA pump that allows him to control his pain medication with the push of a button.

The remainder of the day he was able to catch up on some much needed sleep now that the pain was finally under control. In between naps, his mom, sister and I were able to talk to him a little bit. His responses and joke cracking were slightly sluggish from the painkillers though. He asked for ice chips a lot.

I have nothing else to report, but I guess that’s a good thing. Watching him sleep peacefully and uneventfully was greatly comforting!

On the way to the hospital I was listening to the Newsboys. This song came up and I thought the words were so fitting:

When hope is lost, I’ll call You Saviour.

When pain surrounds, I’ll call You Healer.

When silence falls, You’ll be the song within my heart.

– “When the Tears Fall” by Tim Hughes

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Back in ICU

Last night (around 4 am Saturday) John had a bit of a fever so they moved him to ICU B in the morning. This is a unit for patients who are not as critical as those in ICU A, where he was before. They just wanted to be able to monitor him very closely.

After they removed his epidural Saturday morning he was in a lot of pain (he described it as an 8 out of 10). They started giving him hydromorphone but it did not improve much.

Saturday afternoon his temperature spiked again and the doctors were worried he had developed an infection. They did a CT scan and an X-ray in the evening. His Mom was with him while this happened and kept me up to date. I came back to the hospital after tucking the kids into bed, leaving my parents to sleep on the couches in our living room. (Thanks Mom and Dad!)

After reviewing the scans, the doctor said he is stable enough to avoid doing surgery tonight. He will remain in ICU B overnight and they will continue giving him antibiotics for the infection as well as hydromorphone for the pain. Another complication shown on the CT scan was an ileus in his small bowel, meaning a buildup of material that has stopped moving through his intestines, leading to swelling, pain, and potential blockage.

The other unpleasant thing he had to endure tonight was the insertion of a nasogastric tube through his nose to his stomach. This was to help drain some of the stomach juices and relieve some of the painful pressure in his abdomen.

I should also mention that the good news is, he has started having bowel movements again, but there was a little bit of blood in his stool. Not enough to make them rush him to the operating table but enough that they want to keep an eye on his hemoglobin to make sure it’s not dropping. The CT scan showed that this blood was coming from the same site that was bleeding before, but thankfully it is not bleeding as profusely. Hopefully it starts to heal on its own.

The nurse sent me home to get some rest so that is what I am going to do. Please keep praying.

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4 Replies to “Back in ICU”

  1. I am just now catching up with the news of your week… you all have been on my mind and in my prayers all throughout today and I didn’t know why until I had a chance to catch up with all the update posts I had missed. May God give you the rest you need tonight and hold you all in his loving hands. The kids and I will continue to pray for your entire family and the hope for a strong and fast recovery! We are here for you if you need anything.

  2. It’s hard to even understand what John and his family is going through. How important is the prayer and support of so many of his friends.
    You come along way, and trusting God to see you through.

    Steve Pater

New Room!

Today John was deemed well enough to be moved from the ICU to the surgical floor. Praise God! He was able to sit up in a chair for a couple hours and started on a clear fluids (and jello) diet. No more bleeding. It sounds like he will continue his recovery there until he meets the criteria to go home. Basically he needs to be able to walk, eat, drink and go to the bathroom on his own.

They removed the catheter from his neck as it was no longer needed for quick intravenous access and blood monitoring. I missed the removal procedure but apparently the nurse satisfied his curiosity and let him admire the 5-inch long object that had been in his jugular.

After doing an ultrasound to check for blood clots in his legs, they gave him compression stockings to wear as a routine precaution. Once he gets up and walking again this risk will be reduced.

He is also supposed to chew gum several times a day to help get his digestive system working again. Fun!

The kids and I miss him a lot and can’t wait till he can come home. We visited him this afternoon and then he called to say goodnight before they went to bed. It’s good to see him looking better everyday. To each person who reads this blog I want to say: Thank you for praying along with us and for reminding me we’re not alone! I hope that you are as encouraged as I am to see how our powerful and loving God is answering our prayers.

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4 Replies to “New Room!”

  1. So good to hear that John is improving. We are praying for him and for you , Leanne as you walk through these days. Many are praying as we are on Wednesdays and also at choir. Our God is the great Healer.

  2. This is an amazing improvement!! Now you can focus on recovering as you’ve made it through the ICU phase. You’ve been in my thoughts and prayers.

Visiting Daddy

Dear Readers, I need to thank you once again for praying for us. John is still in intensive care but he has not had another bleeding episode since early this morning. Around 3am, his blood pressure began to drop significantly and the ICU team rushed to give him the blood, platelets, and medications needed to stabilize him. After that, they continued all day (and will continue overnight) to monitor his hemoglobin every two hours to make sure it stays out of the danger zone.

To summarize what the surgeon and intensivist (ICU doctor) said today, they want to avoid operating on him again if at all possible, as it is risky to do so. The site of the excessive bleeding was where the tumour and part of his rectum were removed and the severed parts of his digestive tract were reattached. The blood from this wound was actually gushing out his rectum. Thankfully, that stopped early Thursday morning. However, there could still be more internal bleeding they don’t know about. For now it’s a matter of waiting to see whether his blood tests show any signs of more bleeding.

From what I saw, he seemed better today than when I left him Wednesday night. He was more talkative, more himself. He was even able to sit up on the side of the bed for a bit with the nurse’s help. I brought the kids in to see him in the evening which made them and him very happy.

I don’t know what tomorrow will bring, but thank you all for your continued prayers!

“Let the morning bring me word of Your unfailing love, for I have put my trust in You.” Psalm 143:8

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  1. We are praying for all of you! The updates really help to give us specific things to pray for. You are loved and held by the Father today.

Overnight in ICU

Today was a long day. John was up at 4:00am to shower with his antiseptic sponge and to drink his apple juice at 5am as instructed. We arrived at Grand River Hospital before 6:00am to get him prepped for his surgery at 8:00am.

Three hours later, as expected, the surgeon came out to the OR family waiting room to tell me that everything went well. He removed the tumour without doing an ostomy. I was told John would be in recovery for 1-2 hours and then be transferred to his room, where I could see him.

That’s not exactly what happened.

The surgeon came back before 1:00pm to let me know that they were concerned with how much John was bleeding. They were going to continue monitoring him in hopes that it would start to clot. Otherwise they might have to open him up again to fix it.

As the hours dragged on, I read, drank coffee, listened to podcasts, and crocheted until I ran out of yarn (keeping my hands busy helps my mind stay calm). Under any other circumstances this would have felt like a vacation. And of course I prayed for John. Later in the afternoon a nurse let me say hi to him briefly in the recovery room.

He was transferred to the ICU around 5:00pm. I was finally able to see him about an hour and a half later. He was talking coherently but seemed very tired and extremely thirsty since he wasn’t allowed to have anything to drink yet. He said talking made him feel nauseous. He was still having bleeding episodes, so around 8:00pm they started giving him blood transfusions. They’ll continue to monitor him overnight in the ICU and tomorrow he may need another surgery if the bleeding doesn’t stop on its own.

It was a long day for the kids too. Harry especially was disappointed that I didn’t come home before he went to bed, although I did call them from the ICU waiting room to say goodnight before Grandma and Grandpa tucked them in. They all miss Daddy.

Thank you to everyone who has been praying for us and sending me encouraging messages all day long! Please continue to pray for John’s recovery. I know he is in good hands.

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Surgery

On October 30 at 8am, Tony and part of my rectum will be removed. I’ll have an ostomy bag for a few months which doesn’t sound like much fun but it should be only temporary and it’s a lot better than being dead. 

I’ll likely be in the hospital for a week. I’m planning to shave a few days off that though by recovering more quickly than expected. I just hope the Wi-Fi at the hospital is good enough to get some work done. With my ostomy bag I won’t even need bathroom breaks.

My rectal surgeon, the one I saw today, is the same surgeon who initially broke the news to me back in January that I was probably going to die. Well, today he was throwing around the word cure in various tenses. The sentence, “There is a chance you could be cured,” particulary stood out. 

This is now the second doctor who has used that word cured to describe my condition. I find this quite interesting, considering that back in January every doctor I met kept telling me my cancer was incurable.  

Praise the Lord!

My weight has been increasing significantly. Since I got off chemo I’ve gained another 20 pounds. I’m around the 170-lb. mark now which had been my typical weight for the past few years. Much better than my lows in the 130’s back in the spring. I’ve even cut back on the poutines.

We need prayer. 

Please pray for my rectal surgeon. Pray that God will guide his hands and that everything will go perfectly with no complications.

Pray for my recovery too. I won’t be able to lift anything heavy, like children, for 6 weeks, so pray for Leanne as I won’t be able to help her out as much.

This is a significant step on my road to complete healing.  My liver lesions will still need to be treated at a future date. Pray that God will continue to heal me.

 

In case you were wondering…

Total number of rectal exams: 5

 

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3 Replies to “Surgery”

  1. This is such a blessing to hear John! Praise God! Your story is truly inspirational and it is so great to see how God is working through this situation. We will definitely continue to pray for you, your family and the surgeons.

  2. Hi Leanne and John, I’ve been following your posts throughout your journey, this is such good news and so appreciate your updates! Keep fighting the fight, I believe you’ve got this!! I will continue to keep you in my prayers!! Take care and be well!