another surgery

Right after our trip to California in December Wes was scheduled to have his takedown surgery.  This basically means they were going to reverse his ileostomy and put his intestine back in his body.  He would be hooked up to his new plumbing, the j-pouch and life on the toilet would commence.  

There is nothing like waiting for a call in the surgery waiting room.  Wes's surgery ended up being almost twice as long as they had predicted and I was starting to panic.  Finally they called and said he was in recovery and Dr. Kim was coming out to talk.  He sat us down and began with "remember how I told you there was that 1% chance of complications?"  Well guess what, that 1% was us again.  Percentage of people who get colon cancer at age 28? tiny.  Percentage of people who get cancer and have two tumors? single digits.  Percentage of people who have to have their whole colon removed? small.  Percentage of people who get pancreatitis after surgery? single digits.  Percentage of people who have some type of structural blockage with ileostomy? single digits again.  We're just too darn special for our own good.  So here is what happened, sometime after Wes's first surgery to remove his colon this special little stomach skirt connective tissue found it's way down to his pelvis and attached itself there.  Then his small intestine wrapped around that connective tissue and was kinked.  

All the months and months of unexplained, intense ileostomy pain finally made sense.  This kink was blocking off food and causing partial blockages throughout much of the last year.  He had always felt something was wrong, but everyone said it was fine.  His doctor said a weaker person would have gone to the ER multiple times and eventually they would have found it.  He had endured an immense amount of pain and his doctor was impressed with his pain tolerance.  And we all felt so sorry for all that suffering he had been going through.  

So, the kinkage made the surgery more difficult.  The intestine that was kinked was working so hard to get food through it was enlarged to the size of a large intestine and was very unhealthy.  He had no choice but to remove the unhealthy piece.  He ended up taking 15 inches of his small intestine out.  Then he had to pull all the intestines out to make sure there was enough to sustain life.  He left some of the semi healthy intestine hoping it would bounce back and give Wes more intestine to work with.  He hooked everything back up and actually told me Wes would "skyrocket" now.

Wrong.

The first few days after surgery were great as his bowels started to wake up.  He was finally pooping until things just stopped.  Everything came to a stand still and then back out the other end.  He started throwing up and I was having pancreatitis flashbacks.  They pulled him off food for a bit, slowly built his diet back up and then sent him home.  Just in time for Christmas, hooray!

Wrong, again.

At home his pain began to intensify.  Food was painful and things weren't working right.  It got so bad we ended up at the ER.  Wes even brought his bag of clothes and toiletries.  He knows his body so well, he could just tell he was going to get admitted.  They performed a CT scan and Dr. Kim rushed out of surgery when he saw it to come see Wes.  His CT scan looked terrible.  There was air in his body, fluid in his body and he couldn't quite tell if the connection site was leaking into the body or not.  He was ready to take him into emergency surgery until he saw that Wes's vitals were fine and he didn't look sick like he would if here were leaking feces into his body.  He decided to wait and do more tests.  After 8 hours in the ER he was readmitted to the hospital.  

The next day they did another CT scan to test what kind of fluid was sloshing around in his body.  He came in later and said the connection looked great, the air was from surgery, and the fluid was not blood or pus or stool.  Wes's bowels just don't like to be messed with and are very slow waking up.  They decided to put him on IV nutrition since he was now dangerously skinny.  And eventually he got a feeding tube.

Christmas eve rolled around and he was still in the hospital.  It was looking like he wouldn't get his tube in time to be home for Christmas morning. And then my miracle came.  Dr. Kim, sweet, sweet man that he is, said Wes could go home even though they weren't sure how he would tolerate the feedings.  And at 9 pm that night he was finally home!

On Christmas day an at home nurse set up his feedings and taught him how to use the tube.  He had the tube in for almost two months.  They took it out the day before Valentine's day.  He is in pain every time he eats.  Something about that unhealthy piece of intestine makes it very painful.  It is hard to watch so much suffering.  But he is finally eating normal food.  Every afternoon he starts to get really uncomfortable and it usually resolves itself in the morning.

And all that is just the complications from what should have been a normal surgery.  His j-pouch itself is a whole different story.  Since they removed his large intestine and most of his rectum they created a pouch out of his small intestine to hold stool like a rectum would.  The large intestine absorbs all the water in the body so his stool is very liquidy and he goes to the bathroom about 8-10 times a day.  It is hard to control and painful.  This is his life.  It is sometimes hard to believe that there is no going back and this is all permanent.  Work is hard, sleeping is hard and interrupted by multiple trips to the bathroom, eating is hard, gaining weight has been nearly impossible, the children get on his nerves, and I can't take care of him the way he needed me to.

I think one of the most insensitive things someone could say to him (or to anyone who has experienced a traumatic life changing event) is, "are things getting back to normal?"  

No.  

They will never be normal again.  Eventually it may become a new normal, but no this is not normal.  It is painful and embararssing.  The incredible amount of suffering he endures weighs on my heart, and you don't even see it when you look at him.  There is no way to tell, unless you see the day to day the way I do.  I don't know how much longer he will be in pain. The hard part of this part of the journey is that this surgery was supposed to be an end to the complications and now there is no clear end to feeling this way. Wes struggled with this more than i have seem him struggle with other things. in his mind it was an end to certain things and it didn't turn out that way. At least with chemotherapy they can tell you when you will be done. Sometimes it seems better and then other times it is very bad.  Things have been so complicated beyond what any doctor ever could have expected that we haven't even had a chance to focus on the whole cancer recurrence/surveillance part of the equation. But he endures and i love him more and more for it. 

 And that just about sums up the last two and a half months.  Sorry Dr. Kim, no "skyrocketing" here, more like a very slow ascent.  Wes is my hero over and over again.
And as always, there is no way we could have done any of this without the help of both of our families.  So lucky to have them.