6 months post colectomy surgery, looking back

It started 18 months ago. January 13th 2015, 2 days before my husband’s birthday. He was scheduled for his yearly colonoscopy. Ulcerative Colitis is a condition that he’d suffered from since he was a teenager but had remained nameless most of his life. With the right medications, everything was under control and had been for over a decade. As a world famous martial arts teacher, he enjoyed a very active lifestyle. A veteran vegetarian, he was the picture of health. Or so we thought.

First came the phone call from the procedure center, telling me things were taking longer because the doctor wanted to talk to my husband post-procedure. They usually mailed us the results so I knew something was up. Turns out a mass in his colon had prevented the scope from going through. The biopsy results would tell if there was malignancy. Two whole days of waiting to find out whether my husband had colon cancer or not.
Chemo. Hair loss. Death. This is what flashed through my mind. But then I refused to worry until I had to.
The results came. No cancer…at least not yet.
The doctor was shocked that my husband showed almost no symptoms and was enjoying such a great quality of life.
We opted for stronger medicines as the first course of action.
My husband’s research led him to the SCD plan (specific carbohydrate diet), a very restrictive diet that seemed to work for many people with UC. No grains. No soy. No sweetener of any kind besides honey. No additives.
He fully committed to it immediately. He could not eat any prepared food, nothing from a can, nothing from a package, not even bagged cheese.
We spent a week in Paris and he didn’t have one taste of a croissant or baguette. He had no pasta in Italy. And he didn’t complain once. I had packed muffin tins, baking soda, coconut and almond flours in my carry-on. I cooked meals from scratch and baked every day. He ate eggs and fish for the first time in 20 years.
Unfortunately the diet didn’t produce a miracle. His third colonoscopy that year showed no improvement. The Gastroenterologist was so concerned, he finally recommended radical surgery.

No surgeon in Hawaii had enough experience with this type of procedure. Our next best option was in Los Angeles.
Besides the travel expenses (not covered by our insurance), there were of course the added challenges of being away from home.
A 2-step total colectomy means two surgeries. Three weeks away from home each time.
During the first surgery they removed the colon and built the J-pouch and my husband was left with an ostomy. Using ostomy bags requires a steep learning curve and we sank to our lowest point the first time we had to change it on our own. We tried three times and the bag was still leaking waste product, burning the skin tissue around it. Painful both physically and emotionally for my husband. Heartbreaking for me to watch the man I love suffer. Infuriating to be powerless to change anything.
Thankfully, we got home care once we returned to Hawaii and the help of a professional.
My husband also required IV therapy for several weeks post surgery. I was appointed to administer since bags had to be changed every 12 hours. The first night, I fell asleep on the couch and was awoken by my husband holding his IV line full of blood. Traumatizing!

But with each passing day, he was feeling better. He even ate Indian food for the first time in years. We were excited about the second surgery, during which they’d reconnect the small intestine to the J-pouch. No more bag. No more troubles. We couldn’t wait!

The second procedure was simpler and faster and the hospital stay only lasted two days (as compared with eleven days for the first surgery eight weeks before). He was released on Christmas Eve and we surprised his family on Christmas Day.
Only one week to the New Year. 2016 would be better to us, we were sure of it.

Boy, were we wrong!

The process of getting your body to work without a colon is long and painful. Acids are not digested properly and cause tremendous pain when they exit. Food passes through the system much faster so you have to “go” constantly. My husband woke up almost every hour for weeks. Some nights he slept in the bathroom.
This grueling reality is considered “normal” during the recovery process.
Then came the complications.
Chronic inflammation of the pouch controlled only by extensive use of antibiotics. Four months on them and my husband lost all feeling in multiple toes of both feet. A side effect that is most likely irreversible.
A first blockage 2 months post surgery, which required hospitalization and drainage through a nasal tube. Fun stuff!
Another partial blockage that was resolved at home.
A stricture, discovered later, which causes food back ups and for which the only treatment is monthly dilation.

We were told that life would be much better post surgery but it is not.That has been our biggest let down. We persevered through the tests and the surgeries and kept our spirits up because we were promised the reward of good health afterwards. Noone prepared us for our current reality.
We were told he would be able to eat anything but his diet is very restricted. No colon means no fiber allowed (and the presence of the stricture makes this paramount). No fiber means no veggies, no fruits, no oatmeal, no nuts. Everything that is considered healthy is out the window. We juice so he can get some nutrients in his body. But his main staple is tuna on white bread and sushi. Eating is scary. Food feels like an enemy.

We were told surgery was a cure for U.C. and that he’d finally know what feeling good means! We are not even close. His body is still weaker though thankfully he’s gained some of the weight back.

As for me, well I have the easy part but I worry of course. We’ve both worried enough that we consulted with a financial coach last year and planned for the worse (my husband doesn’t have life insurance due to his health). We also have all of our affairs in order: trust, will, power of attorney, health representatives etc…

Looking back, I am surprised by my own resilience.
I’ve carried us through this, sometimes literally as my husband was too weak to even get out of bed. I found out I’m stronger than I thought I was. I found a greater depth yet to my love for this man, my hero. I am in awe of his beautiful strong spirit, no matter what his body looks like.

The only thing stronger and better post surgery: our marriage.

We now know with absolute conviction that we are here for one another No-Matter-What.
We paid a hefty price both literally and figuratively to get here but we still have each other and that…

That’s priceless.


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6 thoughts on “6 months post colectomy surgery, looking back

  1. Thank you for being there for me every single moment. When the chips were down, you stepped up.

  2. I can somewhat relate to your situation. When my daughter was born in 2008 she was 8 weeks premature. While in the NICU she contracted a blood/intestinal infection which wiped out 80 percent of her small intestine. If they waited longer to perform surgery it could have gone to her colon. So first year of her life she lived in hospitals UCONN, Hartford then lastly Boston Children Hospital.
    She left with a central line and G-tube. A lot of care involved as you know. Special diet that is bankrupting me lol, gluten free, natural foods , no excessive sugar or fat and ect. Bathroom issues are daily, if one is not immediately available ut oh. We pulled from school due to dietary needs and to be honest I was not going to subject her to any humiliation. But we have a child (11 operations later) who was not suppose to live thriving medically speaking. But those early years looking back not sure how we made it , surreal ………….. She maintains on growth chart at 50 percent which is incredible. G-tube was removed last February which was a big hurdle but also a loss of a security blanket if extra calories were needed.
    So again understand the sleepless nites, special diet and yes the financial burden. On the flip side yes agreed pulled as a family together more than ever and most important the surviving family member. My wife like you was the ultimate force in the success;what she learned medically in a span of months was astonishing and lastly her sacrifices were incredibly selfless.

    1. Oh my! Thank you for giving me perspective. I am so glad she is doing better. Here is to family and love!

  3. Sarah,

    You and Burton are too of the most amazing people. Words fail me.

    Yours Truly,
    Patrick

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