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.

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.  

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.

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.