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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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Colonoscopy

10/20/2012

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The bowel prep really is the worst part of a colonoscopy.  If you are properly medicated, you probably won't remember any of the colonoscopy.  The bowel prep involves drinking a special solution starting sometime the afternoon before you are scheduled for the colonoscopy.  It doesn't really matter which type they give you.  They may ask you to drink a gallon of solution, or let you drink small amounts of it, followed by clear liquid drinks.  Of course you can't drink anything red.  That may die your intestines, or if there is still some red liquid it may be hard to tell if there is any blood or not.  The liquids taste kind of salty and aren't too hard to get down - at first.

As time goes by and the drink starts to work there is a huge amount of diarrhea.  The diarrhea increases in frequency as time goes on.  It becomes more liquid as well.  The purpose of all this is to empty out the intestines so that the doctor can take a good look around.  If the prep is not started early enough in the afternoon, rest assured it will take most of the night to finish.  I highly recommend you do not drink any beverages that you actually prefer during this time.  You will likely get taste aversion to them for a very long time.  I once drank some pineapple soda which I liked during the prep and it hasn't tasted as good since.  The next time you have to take a bowel prep it will be harder than the first, because your body knows what is coming with that first swallow.

After a long night of running to the bathroom I was ready for my colonoscopy.  My wife and I went to the surgical center it was to be performed at.  My mother and sister met us there.  They were concerned at what the outcome might be and couldn't wait to find out.  An IV was started and I was wheeled into the procedure room, laying on a gurney, dressed in a hospital gown.  The doctor came in and asked if I had any questions about the procedure.  I said no, so he told the nurse to give me some medication.  The next thing I remember was being wheeled to the recovery room.  Awhile later the doctor came in and gave me a diagnosis of ulcerative colitis.  I had never heard of that, but at least it wasn't cancer (in my aunt's opinion this was worse than cancer).  The medications affected the way I acted for several hours.  The nurse came in and explained my discharge instructions, which included a new medication we were to pick up on the way home.  When she said the name of the medication was Asacol, I asked her if that was beer for my butt.  I'm sure my family was embarrassed.

My wife took me to the supermarket to fill the prescription on the way home.  I felt very uninhibited and was really hoping to see somebody I knew, but didn't like.  I was going to smile and tell them exactly how I felt about them.  Fortunately we didn't see anybody we knew at the supermarket.  The prescription was filled and we went home.  I took a nap.  At first taking the medication seemed normal.  I guess the first few days it was just like taking an antibiotic.  But after a few days it hit me that I was going to take this several times a day for the rest of my life!  It was a depressing thought.  Was I really getting so old I needed medication to survive?  A little over a month prior I seemed so healthy.
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Test results and waiting

10/19/2012

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The colonoscopy was scheduled to take place in about a week and a half. My test results for parasites came back. I had giardia. This didn't really explain much. Giardia is more of a small intestinal bug and I was obviously bleeding from the large intestines as the blood was bright red. Upon researching giardia I found that in the U.S. approximately 5% of the population may be positive for giardia at any given time. Most people just don't have symptoms and it will usually run its course after about 3 months. In fact, giardia wasn't always considered a bad bug, they used to consider it normal flora (normal bacteria and such for your gut). In any event the physician's assistant called in a prescription for me to pick up. Oh yeah - I was also reported to the state health department, giardia is a reportable disease apparently.

The prescription was for metronidazole, brand name Flagyl. According to the FDA this drug is NOT specifically approved for treatment of giardia, but is prescribed for that. How is it that the FDA knows this drug is commonly prescribed for the treatment of giardia, but they haven't approved it for that use? I have no idea. Remember that I was having more frequent stools with blood in them. I was not having diarrhea when this started. I took the Flagyl and diarrhea started within 24 hours. It continued to worsen and I also noticed that my throat seemed to be getting irritated and swollen as well. Could this be my first allergic reaction to a medication? After 3 days I decided I couldn't endure the full 10 days of treatment and called the doctor's office.

An actual doctor was on call and he seemed confused that I had been prescribed Flagyl without having diarrhea and more confused that the medication had actually given me such bad diarrhea. I explained to him that I was so sick now I would end up in the hospital with severe dehydration in a couple more days. He instructed me to stop taking the Flagyl, which I gladly did. Testing several months later would show I no longer had giardia anyway. Another interesting development occurred during this few day period.

I remembered that one of my aunts had colorectal cancer when she was very young. I called and talked to her. I know that many diseases can have similar symptoms, but I was scared after speaking with her. I was 30, and she had cancer in her late 20's. When I described my various symptoms to her, she got very upset and said that was how she presented with cancer. She told me she wished I did have cancer. Now there’s something nobody had ever wished on me before.  Her reasoning was that after 1 operation she was cured and some intestinal diseases aren't so easily cured.  I called my doctor's office and told them about my aunt. They seemed a little upset with me for not telling them at the office visit that I had a family history of colon cancer. I apologized and simply said, "I forgot". It's not like we all sit around keeping carefully logs of all the ailments that have ever affected any member of our family tree. Maybe we should. Maybe such logs could come in handy sometimes. My appointment for colonoscopy was moved up.

Waiting seemed to be the hardest part. I really wanted to know what was going on with me. I had seen colonoscopies as a medic, so I kind of knew what to expect. But, it is different being the patient. There was something I had not anticipated that goes along with the colonoscopy - the bowel prep.


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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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