Both Sides of the Bed Rail
A nurse's perspective as patient and caregiver

Ulcerative Colitis Blog

This blog is about my experiences leading up to a diagnosis with Ulcerative Colitis, living with U.C., having a complete colectomy (large intestines removed), and life after surgery.  Hopefully I can provide insight and hope to others dealing with similar issues.

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More Time in the Hospital

11/27/2012

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The year I had my colectomy I spent 40 nights in the hospital.  I was in and out several times with complications.  The main complication that would recur several times became manifest within a week.

Initially after my surgery my pain was minimal.  I really couldn't understand why people complained about surgery pain so much.  I had my first surgery on Monday.  On Thursday I was allowed to eat a clear liquid diet.  I did so well that on Friday I was allowed to eat a regular breakfast.  I felt great that morning.  I got out of bed, sat in a chair and read the newspaper.  Then my breakfast came and I ate part of it.  Suddenly I didn't feel very good.  I went back to bad for the rest of the day.  Later that night when I finally vomited the nurses could not believe how much I had inside of me.  They handed me a small kidney basin.  I told them to get me a larger basin or there would be a large mess to clean up.  I filled up about half of the large basin.  One of the nurses that night smelled of cigarette smoke very strongly.  That certainly didn't help my nausea any.  I don't think she understood just how bad she smelled to those around her.  She became very bossy and rude to me at one point during the night.  I told her to stop telling me what to do since she wasn't a doctor.  I felt kind of bad for being so rude, but when I told the surgeon what had happened in the morning he said that was o.k. 

I began having pain in my lower back and thought it was from spending so much time in bed.  I certainly wasn't used to being so inactive.  I don't think I had ever spent so much time in a bed in 1 week.  By the following Monday my rectum started to hurt.  Now I thought that possibly the back pain was just radiated pain from my rectum.  When the surgeon came by to see me and I mentioned it to him, he had to do an exam.  Yeah, the kind of exam that no guy ever wants to get.  He said I had an abscess and would need surgery.  I asked when that would be.  He said he would call the operating room and see if I could go tonight (it was about 10pm).  He returned and told me I was going to surgery.  I called my wife and let her know.  She came up to the hospital to wait for another surgery.  Some small drain tubes were places.  This made sitting on the right side very uncomfortable.  The next several months I had surgery to replace drains and drain the abscess several times.  I think once they drained about 500ml and another time it was 800ml.  It was amazing to think of that much extra fluid in such a small area.  No wonder my backside hurt.

To make matters worse I got a bowel obstruction.  This was the worst pain I have ever experienced.  The pain was not relieved by pain medications.  The only time I didn't feel the pain, was when I was asleep.  The nurses inserted a nasogastric tube (NG-tube).  The tube was uncomfortable, but not really painful as it was inserted up my nose and down the back of my throat to my stomach.  The painful part came later.  The longer the tube was in, the more uncomfortable it became to speak or even swallow.  After a few days the surgeon asked if I wanted the tube out.  I replied that I did.  He put some gloves on, took the tape off of my nose and pulled the tube out.  It all happened very quickly.  He said, "Wasn't that better than me writing an order and you waiting for a nurse to come and pull the tube?"  Indeed it was much better.  That tube couldn't have come out quickly enough.

My weakness increased while I was in the hospital and I ended up needing 2 units of blood and 4 units of plasma.  I lost so much weight from not eating for so long that I had to be started on TPN (total parenteral nutrition).  This was delivered through a PICC  line (peripherally inserted central catheter) which went from my right elbow to my heart.  I'm not sure what my lowest weight was, but when I got home I weighed a mere 123 pounds.  And I had probably gained some weight.  I bought suspenders because none of my pants fit me anymore.

The original plan to reverse the ileostomy in 3 months was changed to 6 months.  I am so glad that my surgeon did my colectomy and j-pouch in 2 surgeries.  If it had been done in 1, it probably would have become too infected to repair and I would have had the ileostomy the rest of my life.
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Details of Total Colectomy

11/6/2012

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My previous blog discusses the day I had surgery and how I felt the first few days after.  In this blog I will try to explain what things were done to accomplish a total colectomy (removal of my entire large intestine).  Instead of having a general surgeon perform my surgery, I had a specialist known as a colorectal surgeon perform mine.  A colorectal surgeon specialized in this type of surgery.

The large intestine, or colon, is about 4-5 feet in length.  It begins where the small intestine ends, at the ileocecal valve.  Just after the large intestine starts is where the appendix is attached.  (So I guess I've had my appendix removed.)  The large intestine extends from the right lower quadrant of the abdomen up to about the rib cage, then across the belly and down.  It then goes over to the middle of the belly, and finally down and out.  The last few inches are actually anus, which is different tissue than the large intestines themselves.  

To accomplish the surgery I had, they created some small lap-sites (laparoscopy sites).  I think there were 3 of them.  Through these sites a camera was inserted and instruments were inserted to perform the surgery.  The doctors had to carefully disconnect the blood supply and connective tissue from the entire colon.  I assume that was done first.  Then they would have clamped and cut the large intestine at the beginning and end points.  To remove it, they made a transverse incision right above my pubis bone.  I refer to this as my c-section scar.  It's not quite as wide as a c-section scar would usually be, but it is in the right spot.  After the large intestine was removed then the next part of the surgery happened.

The next phase involved stapling the end of the small intestines (distal ileum) and then turning it into the shape of a J.  At the bottom of the J an opening was cut.  Then a stapling instrument would have been inserted to staple both sides of the J together.  Two rows of staples would have been done simultaneously, with the instrument slicing down the center.  Thus the J-Pouch was created.  This connection is also referred to as ileoanal anastomosis.  J-Pouch is a type of ileoanal reservoir.  The remaining opening of this J-Pouch was then stapled to the anus.  One part of this surgery remained.

Some surgeons consider the surgery basically finished as described above, but the surgeon I had isn't a risk taker.  He wanted to give the J-Pouch time to heal, without stool passing through it, to reduce the chance of serious infection.  Therefore a temporary diverting loop ileostomy was created.  In the right part of my belly, a little below the level of the belly-button the small intestine was pulled up through one of the holes which had previously been made.  This was not the end of the ileum, as that was now a J-Pouch at the end of the digestive tract.  It was more like the intestine was bent in half and pulled through the hole.  It was then cut partway through and sewn to my belly.  This created the opening through which stool would pass into an ostomy bag for the next several months.  This ileostomy had the appearance of a moist red/pink maraschino cherry with the skin off of it.  All of my incisions would have been sewn closed and an ostomy bag was applied to the newly created ileostomy.  

So what I woke up with after surgery was a c-section scar, a couple of small lap-sites and an ileostomy bag.
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    Clip Holverson Jr. was diagnosed with Ulcerative Colitis at the age of 30.  Follow this blog to read about the treatments, including surgery, he eventually had to treat it.

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