Inflamed, Yet Untamed: My Crohn’s Story Part III

Inflamed, Yet Untamed: My Crohn’s Story Part III

This is the third in a 3-part series chronicling Justin’s journey with Crohn’s disease so far. The story gets personal, and may be TMI for some people. Be warned. The first post was focused on J’s history of Crohn’s from his perspective and the second post was about his Oct. 18 surgery and the 10 days in the hospital that followed. This last post will be about his recovery. 

I would not wish the experience of stomach surgery onto anyone. I would also not wish the 9 CT scans I have undergone in a year onto anyone. Or a PICC line in the chest. Or a colostomy. Really any of this. But, such is life and the experience truly does make me appreciate good health and sympathize more with people who have their own medical battles.

Patrice and I had no idea what I was getting into. Had we known, we probably wouldn’t have had the courage to face it. We knew this was big, but truly thought after maybe 5-7 days in the hospital, followed by a couple weeks recovering in Denver, I would be on my way, back climbing those mountains. I even had an expedition in my mind for Denali in May/June.

The hard truth I learned was that I couldn’t even climb out of bed for those first few weeks out of the hospital.

I left the hospital on October 27th, nervous and worried that my insides would fail. My insides were about the only thing that did not fail.  Brad (my buddy visiting from NJ) and my mom carefully placed me in the car and we loaded up all my medical supplies. I left the hospital with my bag in tow along with a port (permanent IV) in my right arm, where I administered IV antibiotics every day at 4:30pm. The IV antibiotics were not my only regimen. I was a walking pharmacy, taking 10+ pills a day. My mom had moved a nice recliner into her living room and I plopped down. My routine would be bed to recliner to bed just about every day.

Taken on Dec. 20, 2016 – Last Day of IV antibiotics

The first week was slow, I was slow. It took me forever to do everything, wake up, get dressed, eat, take a shower.  I rarely left the house. Once a day, my mom took me for small walks around the neighborhood. I forced myself to go over my sister’s house for Halloween to see the kids dress up.

I was dressed as a patient for Halloween 2016.

I was moving too slow for my liking. I lacked motivation to do anything and I hated seeing myself like this. I was used to approaching life at 100mph. Now I could barely go 10mph. I just kept thinking I need to get back on the trail, back in the mountains.

On the morning of November 3rd, I experienced my first complication. I felt off, something more than the usual aches and pain. My chest was really hurting and I was having trouble breathing.  I had felt this in the preceding days, but not as bad as this particular morning. I also had been having pains in my calves. I just attributed this to being inactive. We loaded me up in the car and shot over to the ER.  Within minutes they had me hooked to every device and were drawing blood.  The tests reveled bloods clots, not just one, but several. They started in my calves and some were still there and some had moved up to each lung. Luckily, they were caught very soon, so there was little damage done to my mountaineering lungs. Now Patrice and I would be the only couple to BOTH survive pulmonary embolism! To top it off, the port in my right arm had clotted up too, so they moved it to my left arm. I was admitted for two days and felt immediate relief as I was put on blood thinners. A little setback and a new drug to add to my plethora of medications: 2 injections a day!

I started feeling a bit better after the clots issue was discovered and resolved. And I welcomed another visitor, my buddy Matt from New Jersey! Again, he watched me sleep more than anything, but I appreciated the company and my mom appreciated the break.

My friends are just the best.

It was about another week when they had to switch the PICC line from arm because the line had clotted up again! This time they moved it … to my chest!!  And while they were moving it again, they said why don’t we put IVC filter in your chest to catch any loose blood clots traveling around before they hit main arteries?  Luckily, that was only an outpatient procedure (the basket is still in me, but will be coming out in the next few weeks). Out of everything I’ve been through, I still think having the double line sticking out of my bony chest for weeks was the least pleasant.

It was just one thing after another. I felt so unbelievably unwell. I missed my wife. I wanted to put this whole thing behind me and get back to my regular adventures. I didn’t want to face my condition. Sleeping at night was so uncomfortable with all my new devices. Eating was a struggle for me. I just was not hungry. I had lost 22 pounds during my hospital stay and of course a lot of my insides. Research showed that I would not gain it all back, but every bite was a struggle for me. And strangely enough, some foods I loved in my past life completely turned me off, like I was pregnant! The doctors kept telling me the more I eat, the more strength I would gain, but my appetite was just not there. Mentally, I struggled. But the love and support (and cards and care packages plus a dedication at a From Good Homes concert!) from friends and family was unbelievable and really helped get me through.

To top it off, my IV treatment that was supposed to be six weeks extended for three more weeks, delaying my return to New Mexico.

Patrice came to visit once in the middle of November and my mom and I ventured to visit Patrice in NM the first week of December. It was nice to share with my mom the wonders of NM and have a change of pace. The trip was a huge success and proved that once I finished the IV treatment, I could return to NM and continue to recover.

New Mexico! 

Taking that trip was a huge mental boost, and I knew Patrice would come to Denver for the holidays, so I plodded along in recovery.

Finally, after more than 50 days of IV treatment, my doctor on Dec 21st gave us the go ahead to remove the line! And return to New Mexico! A joyous occasion!!!

On December 27th, I boarded a plane and headed off to NM to our cabin in the woods. Two months removed from the surgery and once again, we both thought that I would be fine, climbing and backpacking and I still wasn’t.

Now that I am three months removed from surgery and one month living at the cabin, I still feel like I am moving too slow for my liking. But, I am doing things I could never do even a few weeks ago. I do walk everyday, but not up that steep mountain in the backyard, the one I used to run up with a backpack. It is hard for me to let my wife do 80% of the work shoveling snow and chopping wood. The infection in my spine and the abscesses on my colon are not gone. The infection is contained, but I still need to try to battle it, thankfully with just oral antibiotics.

I do understand time will make the difference. I don’t like it, but I know someday I will look back and see my progress. I will strap on a backpack and climb that mountain in my backyard. I will even attempt Denali someday again. But for now it is only baby steps and I have accepted that.

And don’t you worry … we already have some adventures planned! Stay tuned …

7 responses to “Inflamed, Yet Untamed: My Crohn’s Story Part III”

  1. Anonymous says:

    As I said already – You are truly a Warrior – Godspeed in your continued recovery!

  2. Courtney McIntyre says:

    I'm always here if you all need something. The mcintyre clan loves and misses you all. I can be your nurse from afar or if you all visit in the future

  3. Casey Cregan says:

    You're the real beef! Love you bro.

  4. Mom/MIL says:

    Think of your recovery as coming back from the dead, for you were truly on your way there. In three months, you've made big progress, although it may not seem that way to you. In three more months, you'll be even better. Be kind to yourself – meaning listen to your body. It knows what it needs to heal.

  5. Misti Little says:

    Justin, in some instances I know how you feel. The feeling of being confined to a couch postpartum was incredibly difficult for me, not being able to do everything I had been doing, even when I was full-term pregnant—it was hard to sit with the fact that I wasn't the same post c-section. I know you went through far worse than that, and are still dealing with so much, so do give yourself the time! I'm sure Patrice tells you that constantly so I'll be a second nagging person (or third, your mom probably says it too!) to say, enjoy the snow months while moving slower. It will be summer before you know it and you will be out hiking again. I'm sure Patrice likes getting a workout in with that snow shoveling in the meantime!

    You two are hardcore in every way possible.

  6. Jamie L says:

    I like how you related your food adversions to being pregnant. I felt so bad after we opened a can of chicken and you nearly threw up! You've come a long way from October 18th. Baby hiking steps will get you back on that summit. We all believe in you!

  7. George McIntyre(Dad) says:

    So sorry for your trials. We all love you, miss you and encourage you to continue to be strong. You're example is an inspiration for all, in this trying world. Two amazing people, the strong survive. Gods blessings on you both. Patience my friends. All the best for you as time goes by.

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