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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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Meeting my Surgeon

10/30/2012

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The day arrived for my visit with the colorectal surgeon, Dr. Sklow, at the University of Utah.  The University of Utah is a teaching hospital.  As such, you don't usually see just one doctor.  Usually several doctors at different levels of preparation visit with you.  I was first seen by a resident doctor, and then Dr. Sklow came in and visited with my wife and me.  My four years as an Air Force Medic had given me insight.  I knew what to look for in a doctor and I was very impressed by Dr. Sklow.  He asked the right types of questions.  He listened to me intently, waiting for my full response.  He thoroughly discussed the plan for surgery.  In addition he gave me a booklet about the j-pouch. 

He did have to do an exam I had never had done before.  The purpose of the exam was to help insure that I had ulcerative colitis and not Crohn's.  The exam involved putting a scope/speculum in the anus.  The doctor explained that ulcerative colitis would not be on the actual anus tissue, but Crohn's would be.  He further explained that the doctor from Idaho Falls, who diagnosed me with ulcerative colitis, had sent him a patient in the past with a diagnosis of ulcerative colitis, which was eventually proven to have Crohn's disease.  If this were crohn's disease, I would not be a candidate for surgery, as the disease would just return someplace else.  I understood the reason for the exam, but it was very uncomfortable.  This was at a point in my life when I had poor bowel control, and putting something in that area made me nervous, and was very uncomfortable.  Luckily the exam only lasted a few seconds. 

I was confirmed to have ulcerative colitis.  We further discussed the plan for surgery.  I was to have my entire large intestines removed.  He would then take the end of my small intestines, the distal ileum, and make a j-pouch.  This would be stapled to my anus.  Additionally he would bring part of the small intestines through the skin and create a temporary loop ileostomy.  An ileostomy is like a colostomy, except that it is from the ileum instead of the colon.  The plan was to have the ileostomy for 2.5 to 3 months while the anastomosis of the j-pouch to the anus had time to heal.  The surgery was being done in phases to reduce the risk of infection.  If the connection didn't heal right and began to leak into my gut, I could get really infected.  Sepsis and death are real possibilities when stool leaks inside of you.  The entire surgery was expected to last 6 to 8 hours.

I was excited.  When could he do the surgery?  I would gladly have gone in the next day.  They weren't able to get me scheduled until the end of February.  That was over a month away and that seemed like a really long time.  I spent the next month and a half, mostly just lying on the couch at home and running to the bathroom.  Such was my life now. 

Two days before the surgery my wife took me out to one last good dinner.  It would be awhile before I was able to eat real food.  We went to my favorite Mexican restaurant in Idaho Falls, Idaho.  I ate Mexican food and drank orchata until I was as stuffed as after Thanksgiving dinner.  The day before the surgery we went from Idaho to Utah and stayed with my sister in a suburb of Salt Lake City.  There I began one final bowel prep.

I drank the prep and then had to drink a gallon or more of a beverage of my choice.  I chose a pineapple flavored soda.  This was one of the few foods/drinks that still tasted good to me that was clear enough to drink for the prep.  Over 5 years have passed and I still do not enjoy pineapple soda as much as I used to.  I would recommend drinking something you can tolerate, but that isn't one of your favorites for all bowel preps.  Even though I began the prep in mid-afternoon I was up most of the night going to the bathroom.  By morning I felt famished.  I was used to feeling weak, and a night of bowel prep only made things worse.  Now it was off to the hospital.
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The New Year

10/29/2012

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Many medications had not worked for me (or had given me seizures).  I had tried Asacol, Colazal, Prednisone, and Mercaptopurine.  I had tapered off of the medicines, fed up with the poor control over my bowels and the side effects of the medicine.  I do realize that there are people who have good control of their Ulcerative Colitis or Crohn's Disease with medication; I just wasn't one of those people.  I was diagnosed with Ulcerative Colitis in the fall of 2005.  By about Halloween of 2006, I knew nothing was working and I needed surgery.  Not wanting to disrupt anybody's holiday celebrations, I waited until after the first of the year.

When I got up in the morning of January 2nd, 2007 I asked my wife to make me an appointment with a surgeon, the same day if possible.  She asked if something was wrong.  Of course something was wrong, and I was ready to fix it for good.  She asked which surgeon she should make the appointment with.  My reply was that I didn't care, as long as it was a general surgeon that could get me in that day.  That afternoon I saw Dr. Boyd Hammond in Idaho Falls.

I took a copy of my medical records.  My vital signs were taken.  I remember my blood pressure being in the low 80's over the high 60's, something like 82/68.  No wonder I could barely walk up a flight of stairs.  My fatigue was worsening all the time.  I explained the side effects I had from the medications.  We reviewed the many tests I had, including several colonoscopies, endoscopy, capsule endoscopy, testing for celiac disease, blood work, and biopsies.  We reviewed my current symptoms, including several episodes of incontinence.  The doctor did the most thorough exam I had had to date.  Luckily my wife had stumbled on a very good, experienced surgeon.  The surgeon made his recommendation.

He was clear, "you need surgery."  Those words, which may have scared some people, were a comfort to me.  I asked him when he could do the surgery.  He informed me that he wouldn't do my surgery.  He went even further.  He was honest enough to tell me, that although there were a few doctors in town that had done total colectomies, none of them were really experienced enough.  He told me he wouldn't let any of them perform this surgery on him.  He told me about a doctor who specialized in colorectal surgery at the University of Utah in Salt Lake City, Utah.  He told me it was a very good surgeon, by the name of Dr. Bradford Sklow.  He would personally call Dr. Sklow's office and get me an appointment.

I went home and waited for the call.  An appointment was made in just a couple weeks. It was the earliest I could get in to Dr. Sklow.  I waited with anticipation, not nervousness.  I saw this as a great opportunity for me.  If removing my entire large intestine would improve my bowel habits and way of life, I was all for it.  At the same time, I often got after doctors for touting that as a cure for Ulcerative Colitis.  I told them I thought that was like curing a broken or infected toe, by amputating the foot.  I could hardly wait to get my intestines out.  Living with an ostomy bag didn't sound like that bad of an option to me.
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First Appointment with the Gastroenterologist

10/17/2012

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They called my name and I left the waiting room.  The nurse or aid took a set of vital signs and asked me some questions: Do you smoke?  Do you drink? Do you have any pain?  Do you have any diarrhea?  Do you have any family history of colon cancer?  These were the same types of questions they had asked me over the phone when I called to make an appointment.  They seemed not to believe me.  That or they thought something really bad was wrong with me.  I could tell by the looks on their faces and the way they got quiet after I answered the questions.  They looked puzzled and concerned.

I visited with a physician's assistant who again asked the same questions.  He also did an exam which included my laying on the exam table while he poked around on my abdomen.  The only pain I had was a slight discomfort in the lower part of my belly, the area of my bladder.  After he asked the questions and did the exam the time came for explaining a diagnosis.  The first thing he said was something like, 'Well, it can't be cancer because you're too young for that.'  Did he seriously just say that?  To me that meant that the first thing he thought of was cancer, and that he was ruling it out solely on the basis of my age.  Deep down I knew he thought it sounded like cancer and this bothered me.  He then explained the 2 things he thought this likely was: Diverticulitis or Crohn's Disease.  I had heard of these, but didn't really know what they were.

He explained that Diverticulitis is caused by a bunch of little pockets in the Large Intestines, which become inflamed at times and can bleed.  I later found out that that disease is much more common in the elderly.  Crohn's Disease is basically inflammation of some portion of the digestive tract (from the mouth to the anus) which can start to bleed.  Surgery is usually avoided unless perforation is suspected or believed to be imminent, because you need your digestive tract, and if they cut out the affected portion, Crohn's will return in another area.  After the explanations, lab tests were ordered, just in case it was a parasite.  I was also scheduled for a colonoscopy.  That was a test that I don't think my dad had even had, I was feeling really old.

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    Author

    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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