My climb up UC mountain

I’ve been wanting to document my journey for months.  So much has happened in my life over the past year, I need to tell the story while it is still fresh in my mind.  So here goes....

My story starts here...

This is me in Lake Powell August 2017.  I have great memories of this trip and until the last day I was having the best time playing in the water with my family.  The last day of our trip, I noticed streaks of blood in my stool during a trip to the bathroom.  Little did I know, that moment would be the beginning of disease that would change my life forever.  Up until my trip to Lake Powell, I considered myself in the best shape of my life.  I was an extremely active 42 year old.  I exercised daily.  I had run 11 marathons and had been weight lifting religiously since I was in my 20’s.    I ate right, never smoked, or drank alcohol (I didn’t even drink soda pop).  I even ate my vegetables.  I’m not bragging, just emphasizing that I had always taken excellent care of my body.

Fast Forward to early September 2017.  The occasional blood in the toilet had evolved into super gross mucus and bloody diarrhea.  I had dealt with similar symptoms a year or so before but, it was much more mild and cleared up on its own after a couple months.  This was much much worse.  I decided it was time to see the doctor.  Let the tests begin!

Welcome to Club UC

Later that month I got a phone call from my doctor that I’ll never forget.  “Hey, um.... your inflammation markers are off the chart.  This usually is an indicator of an Inflammatory Bowel disease like Chrons or Ulcerative Colitis.  We need to get you in for a colonoscopy ASAP.”  The next day, the colonoscopy confirmed that I had Ulcerative Colitis (UC).  I was handed a bad full of drugs I was to start taking everyday and follow up with the GI doc in a week to see if any of the symptoms had improved.  I walked out of the office a little overwhelmed but relieved that I could start some medication that would take care of my symptoms. 

  I had heard of UC before. One of my friends that I trained with was diagnosed with it in his twenty’s.  I knew that he had to take medication regularly and that he eventually had to have his colon removed because they thought it might have cancer.  Besides that, I didn’t know much.  My GI doctor was awesome.  He did a great job explaining what UC was.  I also began reading about it like crazy.  I found blogs, online support groups, medical journals.  There was tons and tons of info.  I read everything I could get my hands on.  I learned that UC was an autoimmune diseasee that attacks your large intestine (colon and rectum). These attacks cause ulcers in the lining of your large intestine, and that’s what produces all the terrible symptoms.  I also learned is wasn’t curable, but could be treated with medication and in severe cases may need surgery. I was confident my case was mild since the GI said it was only affecting the first few inches of my colon and that  with some help of the meds, I would be back to my normal self in no time.

CT Scans & Cancer

October 2017

One of the tests my GI wanted me take was a CT scan.  He said this would help them better confirm it was UC and not Chrons disease, since they are very similar and often misdiagnosed.  I thought, no big deal.  It was just another one of the endless tests I have had to do recently.  I went in to the hospital, drank a chalk and berry flavored smoothie,  put on a hospital robe and climbed into the big tube machine that I had seen on countless movies.  I really didn’t think anything of it until I got a call the next day.

My GI doctor started by saying “I don’t usually like to do this over the phone but, the CT scan showed a tumor on your left kidney that we think is renal cell carcinoma (aka kidney cancer)”.  He said it can be very curable if they catch it early enough but, there was some enlarged lymph nodes around it and they were concerned it had already spread.  He referred me to a urologist and said I should get in touch with them ASAP”.

I was completely shocked.  I went into the conference room at my work closed the door, and started to cry.  While the UC was life changing and rehabilitating, I never felt like it was going to kill me.  Now, I was faced with a new totally unrelated disease, that in fact could kill me. My worries about UC evaporated. In their place, I was staring at a much more sinister villain, kidney cancer.  That’s something that I had never experienced and I cannot even begin to explain how it feels.  It was a cold and bitter dread that I never want to feel again.  The crazy part to me, was that it wasn’t my life that I felt I would miss, I could only think about my wife and kids.  How could I not be part of their lives?  How could I not be there to provide for them? I realized with perfect clarity that my family was the best part of my life and the thought of me not being with them, was more then I could take.

Halloween 2017

At the end of October I had met with a highly recommended urologist.  He had me do another CT scan to get a better look at the tumor on my kidney.  He confirmed that it really did look like I had cancer and should have it removed.  We set a date for Surgery to be November 13th.  He explained he would be doing a robot assisted partial nephrectomy.   They would remove the tumor and the kidney tissue around it to try and make sure they got it all.  He did disclaim that once he got in there, he could really see what was going on, and there was a chance they may end up taking the entire kidney.  I told him to do whatever he had to do to get it out of there.  He said this type on cancer is very curable and gave me reassurance that he didn’t think it had spread into the lymph nodes.  He did say if it had, there wasn’t a lot they could do for it.  The typical cancer treatments of chemo and radiation were not considered effective against kidney cancer.

 For the next couple weeks I played the waiting game.  I Got the house ready for winter, got our family Christmas card photo done and just prayed that the cancer hadn’t spread.

This was our family photo taken a week before my  kidney surgery.

November. 13th 2017 - Partial Nephrectomy

The remarkable thing about a week before my kidney surgery, my UC symptoms completely vanished.  I felt fantastic.  The meslamine meds were working and I feel truly blessed that I got to into surgery without worrying about how I was going to deal with the diarrhea from hell.

I have no memories of the surgery (thank goodness). I remember laying in the hospital bed and getting an IV.  Someone saying they were going to put something into my IV to help me relax.  My next memory was me waking up in the recovery to excruciating pain in my abdomen.  I remember vomiting, and gasping for air.  Somebody yelling.  “He’s up and he’s not happy!”  The next memory I have is being wheeled into a room, ribs aching and miserable but the pain meds had kicked in and everything was super fuzzy.  I peaked at my abdomen to see the five,  3/4 inch incisions the robot assisted surgery used.  It looked like I had taken it in the gut from a shot gun blast.  I floated in and out of sleep for most the rest of the day. 

My doctor came to visit that night with some fantastic news.  They had successfully removed the tumor and about 1/6th of my kidney.  They also removed a couple lymph nodes and tested them.  While the tumor was confirmed to be cancer, the lymph nodes were clear.  There was no sign that the cancer had spread.  I was elated.  The relief that cancer may be behind me was so sweet.  I said a sincere prayer of thanks and fell asleep.

Flare of all Flares & the Devil (aka Prednisone)

The week after surgery was fairly uneventful.  Recovery was rough but, I took it easy, followed directions precisely including plenty of walks and rest.  However, after that week, my UC symptoms started to come back.  Only this time, they didn’t stop at just annoying and inconvienent.  Now, there was pain, cramping, lots of blood and URGENCY. 

My GI recommended that I add a little pill called prednisone to my regimen.  He said I would only be on it temporarily but it should do the trick to get my symptoms in check.  I started with a dose of 40 mg to be taken every morning for a week and then start tapering a little a few days until I was done.    Had I known what that drug would do to me, I never would have touched it with a 10 foot pole. 

While I did notice some relief of UC symptoms, the relief did not come without a price.  The list of side effects hit me full force.  I began to experience the following: brain fog, sleeplessness, hand tremors, blurred vision, extreme irritability, severe mood swings, muscle erosion, blood sugar issues and my personal favorite, psychosis. After a couple days on the stuff, I began having full on temper tantrums. I was screaming, punching walls, hitting myself.  I had become a true living, crazy, nightmare.  This was so out of character for me.  I was scaring my wife.  I was scaring myself.  My doctor had me start tapering off the drug immediately, which I did happily.  He said that since I was no longer responding well to the meselamine and enemas it was time to step up the meds.  He recommended that I start doing a biologic infusion that targeted the immune system of the gut called Entyvio.  There were other biologic drugs that he typically would prescribe (i.e. Remicade, Humira) but, because they have have risks of cancer and with my cancer history he felt Entyvio was a safer route.  Since prednisone and I were not friends, I was happy to sign up for the infusions.  I was scheduled for my first infusion a week later which was the same day I would be totally tapered off the prednisone.

Biologics & the ER

December 12, 2017

It was no coincidence that the more my dosage of prednisone decreased, the more my UC symptoms increased.  The day I went in for my first infusion, I was not feeling well at all.  I had been running to the restroom all night and all day about every half hour.  I was cramping severely, and was losing tons of blood. 

I went to the hospital so hopeful that Entyvio would be the miracle that would end all of this.  I sat in the chair, they set up the IV and pumped a $10,000 bag of fluid into me.  During the infusion I went from feeling bad to worse.  I had to get myself to the bathroom down the hall twice during the infusion.  I walked the IV pole into the bathroom.  By the end I was in total agony.  I began vomiting.  My cramps and pain were off the chart.  I became almost completely incontinent. 

I was rushed to the ER.  I was in complete agony.  I was gasping for breath and convulsing.  That was as close as I’ve ever felt to dying.  They hooked me up to IVs and started pumping in the drugs.  Pain killers and IV steroids (prednisone).  The drugs worked quickly and I felt some relief.  They also did a CT scan to see if my colon had rupture or something.  My GI came in and let me know that my colon had not ruptured, however, the UC has now spread to the entire colon.  He called it severe Pancolitis.  This was the first time that surgery was brought up as a possibility in my future.

I would spend the better part of the following week in the hospital trying to get my symptoms under control.  Even on the meds, I was averaging around 15 to 20  trips to the toilet in a 24 hour period.  I had been losing weight which hit an all time low in the hospital.  I went from a lean and mean 160 lbs to a sickly 130 lbs.  I left the hospital still sick but put back on prednisone to help manage the UC from going out of control.  The game plan was to be on prednisone until the Entyvio had a chance to kick in (typically taking around 10 weeks).  The next few months would become an absolute low point in my life. 

Hospital after UC flare

3 months in prison

I think my urologist said it best at one of my follow up appointments.  “Man, you are existing, that’s not even surviving, and you are a long way from thriving”.  This is how I felt.  Existing, but barely.

I had become a prisoner of UC.  The only relief I had from it was granted by prednisone, which was a deal with the devil.  By splitting the dose in two, I was able to avoid the more serious side effects like psychosis.  However, all the rest of the symptoms were with me the whole time.  This period became the biggest trial I had faced this far on my UC journey.  Despite trying all sorts of diets and natural remedies,  I never got below 10 bowel movements a day during this time.  I had more accidents then I could count.  I started wearing adult diapers.  I began only being able to tolerate eating small amounts of chicken and rice.  I was in constant miserable pain,  both day and night.  I truly cannot describe how sick I was.  I look back at it now with reverent awe.  The crazy part is that I don’t know that beyond my family and a few close friends, nobody really understood how sick I was.  UC is a foreign illness to most people. It was around this time when I decided that raising awareness about UC and Chrons would become a big part of my life.  These diseases were much different then having an “icky tummy”.  This was also  the time where I feel I learned the most about myself.  I learned how truly tough I can be.  I found an inner grit that I believe was given to me from God, and that helped me endure.  I learned what true patience was as I counted the days until my next infusion of Entyvio.  I was so hopeful that any day, the biologic would kick in and I would finally feel relief.   

Out of options

I knew that Entyvio was my Hail Mary pass.  I knew that I couldn’t be on prednisone for a long time without experiencing even more serious side effects (diabetes, glaucoma, osteoporosis, etc.). I knew that if Entyvio didn’t work after about 3 months, it wasn’t likely that it would.  As I approached the 3 month mark,  I decided to try and taper out of the prednisone.  My UC responded by throwing a temper tantrum in kind.  My trips to the toilet skyrocketed to around 15 day.  I tried increasing the dose of prednisone back up but, to no avail.  The UC was starting to ignore the medications.  It was at that point that I decided to meet with a Surgeon.  My GI recommend the top GI surgeon in the region and I made a appointment for a consultation.

After looking at my CT scan and my current condition, the surgeon  confirmed that my colon was in really  rough shape.  He was surprised that I was able to go to work and even function moderately.  He recommended that I strongly consider surgery and based on my condition, should consider it sooner then later.

I went home to think about it.   I knew that he was right.  I knew the only thing keeping me out of the hospital was the prednisone which was beginning to fail. I was out of options.  It was time.

My surgery was schedule for February 22nd 2017.  

Feb 22nd - My new birthday

The day I came back from the dead.  I had surgery to removed my diseased  colon and an ileostomy (stoma) created.  Waking up out of this surgery was completely opposite from my kidney surgery.  Instead of agony, I felt total peace.  There was immediate relief.  The monster inside me was gone.  I was absolutely sore, but the liberation that came from beating UC was worth every discomfort that the surgery brought.  I knew the road ahead of me would be long, hard, painful, but just knowing that I would never have to deal with UC again gave me so much hope.  As sore as I was, I felt like myself again.  It was a sweet, sacred feeling that I will never forget.

Post surgery. “No Colon, Still Rollin!”