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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Off medications

11/18/2013

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I've been taking loperamide (immodium) twice a day since my loop-ileostomy take-down in 2007.  About a month ago I missed several doses in the same week and didn't notice much difference in my stool consistency.  I decided to stop taking it all together.  It's been a success and I'm glad to not be taking any medications at present.  All I'm taking now is a multi-vitamin and mineral supplement.  Medications are nice to have when they are needed, but it's a blessing to not need them as much.

Write me down as happy with my colectomy and j-pouch.
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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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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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More Medications for Ulcerative Colitis

10/24/2012

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I wasn't off of the Asacol very long before my symptoms returned worse than before.  They then put me on Colazal.  Colazal also has mesalamine as its active ingredient.  In other words, different brand, same medication.  After about a week on the Colazal, my head began feeling tingly again, as it had on Asacol.  I stopped taking it and my neurologist agreed that I should ever taken Asacol or Colazal again.  The physician's assistant at the gastroenterologist's office wasn't as convinced.  He seemed angry at me, talked down to me.  He told me that if they couldn't get my ulcerative colitis under control I may need surgery and could have a colostomy for the rest of my life.  

I asked him, "if you had to choose between thinking straight or pooping straight, what would you choose?"  He never really did answer that question.  We disagreed on the fact that flagyl had given me diarrhea, my position was that it was a poor drug to choose since my symptom (bloody stools) was not likely caused by giardia.  I pointed out to him that flagyl can actually cause pseudomembranous colitis.  He said it couldn't.  I told him to read the package insert from the drug manufacture and learn more about the medications he prescribes.  It was the last time that office ever told me that I couldn't have a visit with the actual MD because he was too busy.

Thereafter my visits were with a doctor.  I think the physician's assistant didn't want to see me anymore.  Each visit, the doctor would sit with his legs crossed, rarely making eye contact.  He would pay the most attention to my record on his tablet computer.  Eventually he would say in a therapeutic voice, "You have what we call Ulcerative Colitis."  What a joke!  Did he think he was so stupid I couldn't remember that diagnosis in-between my visits which occurred at least monthly?  It seemed as though he was treating me like a small child.  He would review my blood work.  He would ask about my daily activities, and then sometimes declare that most people with blood work that looked like mine were unable to work, on disability, and in the hospital.  Maybe so, but how could he help me.  I was an active person, and very stubborn.  Other medications were tried.

I was given mercaptopurine, a 6-mp drug.  The doctor told me it was so safe that they prescribed it to pregnant women.  I later discovered that it was commonly used for chemotherapy for cancer patients.  I was also put on prednisone.  The plan was to decrease the dose after the mercaptopurine started to work.  This drug never seemed to work for me.  Each time the dose of prednisone was decreased my symptoms returned worse than before.    I began to experience joint pain, primarily in my hips and shoulders.  Sometimes when I went to the bathroom, I wasn't sure if I passed anything, but blood.  I definitely was not getting any better.  I sought a second opinion.

The next doctor I went to was very worried about the joint pain.  Apparently some people are genetically predisposed to a bad joint problem, and should not be given mercaptopurine.  He ordered blood tests and x-rays to check my hips.  Everything checked out o.k., but it still seemed reasonable to stop taking the mercaptopurine since it had worked after several months.  I was now on high doses of prednisone.  Initially it did help my ulcerative colitis, but its effect seemed to be ever decreasing.  Weight gain was the only good side effect I experienced from prednisone.

I experienced psychotic side-effects.  At the time, I was unsure if this was due to seizures, seizure medication, or what.  I didn't talk about them until they had been gone for about a year.  I heard voices.  At first the voices seemed like a dull mumble.  I could be sitting alone in a room alone at home, and think I heard a person or two speaking softly in the other room.  Of course, if I went into the other room nobody was there.  I would check outside, but nobody was there either.  The voices usually came when there weren't people talking or other sounds.  They got louder as time went on.  Sometimes it seemed they were talking in the back seat of my car when I was driving alone.  They became more audible with time.  They spoke clearly, and never said nice things.  Mostly the voices just had insults or told me to go do bad things.  They would taunt me.  I pretended not to hear.  

There was no way I was going to start arguing with those voices.  They got more frequent and even started talking to me at work, whenever nobody else was talking.  When I wasn't listening to somebody or some music, the voices were there.  It was so bad; I had to listen to music as I went to sleep at night to keep the voices from disturbing me as I tried to fall asleep.  I became somewhat paranoid of many coworkers, neighbors, and close friends.   
In the past I had to be close to a bathroom, but now sometimes close wasn't close enough. 

There isn't much as humiliating as suddenly feeling such a strong urge to defecate that your only choice is to crouch down on the sidewalk and try with all your might not to use the bathroom, while your body cramps and you lose all control.  I didn't recognize that the psychotic side-effects were due to the prednisone until I went off of it.  I did go off of it.  I was at my wits' end.  I spoke with yet another doctor about tapering off the prednisone.  A taper schedule was written and approved by the doctor.   I now knew I needed surgery, but it was the holiday season and I didn't want to disrupt anybody's plans.  I waited until the holidays were over.  
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Side effects of Asacol

10/23/2012

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I was now taking several tablets of Asacol, 3 times per day.  Asacol is one of several medications with an active ingredient of mesalamine.  All medications have side effects.  When considering whether or not to take a medication you should consider the risks and benefits and the opinion of your doctor (after all, the doctor has years of specialized training).  At first this seemed like a great medication for the treatment of my ulcerative colitis, but that soon changed.

It seemed that my stools were practically normal almost immediately.  I couldn't see any more blood, and the number of stools per day was reduced as well.  Taking this expensive medication several times a day the rest of my life might be worth it, if it really was this good.  If only it lasted.  After about a week of taking Asacol, my brain began feeling differently.

The first side-effect I noticed was a tingling sensation in my head.  I poked at my skull with my fingers, wondering if this sensation was in the skin, but it wasn't.  This tingling sensation was coming from inside of the skull - my brain!  The feeling got stronger each day.  At times the tingling was so apparent it made it difficult to concentrate on anything but the tingling in my brain.  

Another side-effect I experienced might best be described as a brain fog.  I was having trouble organizing activities and returning to them.  This made ADD seem pretty mild.  I was working as a loan officer and the only way I was able to keep things straight was to follow a rigid system.  I had developed a system for organizing all of the loan files I was working on, or had recently worked on.  So when I found myself sitting in my office wondering what I was supposed to do, I was able to just methodically go through the files in my office and the database I kept on my computer.  Often somebody would stop by and begin talking to me like they knew me.  I learned to play along and then ask for their account number and verify their last 4 of their social security number when I pulled it up in the computer.  Once I had their account pulled up, I would get the loan file and often be amazed that just a few hours earlier I had worked up this person for a loan.  The proof was in my own handwriting!  Luckily I kept good notes and was able to look up what additional requirements I had requested.  These two side-effects among others were constant, as long as I was taking the Asacol.

Another side-effect I noticed was the inability to keep track of time.  Sure I wore a watch and had clocks in my office and at home, but without looking I had no idea what time it was.  If I could see outside I could tell if it was day or night, but otherwise had lost the ability to estimate time frames.  For example, more than once at work I noticed people turning off many lights, and going about their activities as they would at the end of the day.  I was baffled; they were all pulling a prank on me.  They had managed to change the time on the clock in my office and even my wrist watch.  It seemed I had only been at work about half an hour, or sometimes perhaps 2 hours at most.  Why did the clock say 5:30pm and how did they get everybody to play along.  I got on the internet to check the time.  It was indeed 5:30pm, but what had I done all day long?  I referred to my database and reviewed the list of loan applications I had processed that day.  I couldn't remember any of it.  This worried me, but I put my things away too, and went home.  The opposite effect sometimes happened too.  Sometimes when I checked the time it was only 10am, but I felt exhausted and it seemed as if I had been at work all day or even for 2 days straight (not leaving overnight).  

My memory was obviously affected by this, but it wasn't for months later that I realized how bad it really was.  It was January and I was sitting on the couch at home.  The holidays had passed while I was on Asacol.  I thumbed through a pile of books next to the couch.  There was a really neat book about Mayan hieroglyphics.  I enjoy reading such books and was glad to note this one was not even a library book.  I asked my wife when we had got this book.  With tears in her eyes, she replied that I got it for Christmas.  Could I really not remember?  I realized I couldn't remember Halloween or Christmas.  I think I could only remember Thanksgiving, because we went to my sister's new house and everything was so unusual to me that I remembered it.  I'm a fast learner so after I got caught having forgotten something like that a couple of times, I just stopped asking such questions.  I still don't remember Halloween or Christmas from that year.

The final and worst side-effect of Asacol for me was seizures.  My head had begun feeling tingly after about a week on that medication.  After about another week I began having seizures.  I asked my gastroenterologist and my neurologist about the side-effects of Asacol.  They denied these being side-effects, because they weren't in the available literature.  I pointed out that somebody had to be the first to experience a side-effect and that even if a side-effect is rare it still exists.  The physician's assistant at the gastroenterologist said I was "Lucky".  I told him he had and interesting definition of the word lucky.  As time went on I trusted my doctors, and other people, less and less.  I really believed that Asacol had given me seizures.  I still think I probably never would have had seizures were it not for taking Asacol.  

My neurologist had me on one medication and wanted to add another.  He finally got me to agree to an additional medication if a new EEG showed no seizure activity. An EEG was scheduled in about a week and a half.  I went home and stopped taking the Asacol.  My head began feeling better within a couple of days.  My EEG showed no seizure activity.  It was a step in the right direction.  My seizures decreased in intensity and frequency.  They never did completely go away.  Seizures are a problem I still deal with.  You can read more about them in my other blog.

Without taking Asacol, how would my intestines be?  Time would soon tell.
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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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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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Seeing Red

10/16/2012

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Some descriptions in this post may disgust some people.  Those who study or have experienced these symptoms will relate to the descriptions.  My intent is not to offend, but to educate.

In the fall of 2005 I began to notice blood in my stool.  I wasn't really having any cramping.  In fact I didn't really even have diarrhea.  I was having 2-3 stools per day, instead of the 1 I would normally have when I didn't have diarrhea.  The stools were somewhat yellow (not normal for me) with obvious amounts of blood mixed in.  I didn't strain or experience any pain, so I figured whatever it was, it wasn't a hemorrhoid.  I did notice that I had the urge to urinate more frequently, and felt like I had to go even immediately after voiding.  Urination didn't cause any pain, but other than the blood this was my only symptom.  I waited to see if this would go away.  After about 3 weeks it was getting worse.  Still no pain, but the amount of blood was increasing.  I figured I had better see a specialist.  

I knew a co-worker had a sister that worked at a hospital, so I asked her what specialist I should go see.  Following her recommendation I made an appointment to see a gastroenterologist.  When I called to make the appointment they asked about my symptoms.  They seemed incredulous that I had no pain.  They asked if I had pain when I pushed on my abdomen.  I pushed around a bit and noticed that I did in fact have a small amount of discomfort when I pushed over my bladder.  They said they would mail out some paperwork for me to fill out and bring to my appointment.

A couple days later my wife asked me what a gastroenterologist was.  I asked her why she wanted to know.  She said we got something in the mail, and she thought it may be for my grandfather.  I have the same first name as my father and grandfather, so such mistakes have been known to happen.  She was appalled when I asked what she had done with the mail, and told her it was for me.  She was upset that I hadn't told her about the problem.  She was very worried about it.  I told my wife that that was exactly why I hadn't told her.  She had 3-4 weeks less to worry because I hadn't told her.  We still disagree on whether or not this was the correct approach.  My wife feels I should have told her.  I feel that it would have done no good to tell her sooner.

I filled out the paper work and waited for my doctor's appointment.  When the day came, I went alone to my appointment.  In the waiting room were magazines like in other doctor's offices I had been to.  These magazines all seemed to be for old people though.  I looked around the room and realized that, at age 30, I was by far the youngest person in the waiting room.   




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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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