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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Best Way to Change an Ostomy Bag

11/13/2012

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Anybody can change an ostomy bag.  But, to make as little skin irritation as possible and to make the wafer stick for several days takes practice.  Here are some of the tips and tricks I found helpful.  Some of them were taught to me by ostomy nurses, some of them I learned by practice.

I prefer the 2-piece system, one in which the wafer and bag are separate pieces.  The reason is that you can turn the wafer the exact angle that you want it and have the bag connected to hang at the angle you want.  I used the flat wafers, but others may require tapers, depending on the contour of their belly.  I usually preferred the wafers that I could cut to size.  They seemed to keep their shape and stick a little better than the mold-able wafers.  As far as the bags I really liked the ones with a cloth mesh backing.  They didn't seem to stick to the skin as much.  Although, with time you get used to having the plastic bag on your skin.  I also liked the built in gas-permeable filter vent (Hollister sells one).  The advantage of the vent was not having to burp the bag as often to release gas buildup.  It is important to remember to cover the vent with the sticker it comes with whenever you bath or shower.  If you don't cover it and it gets wet from the outside, not only will it not vent gas very well, but it will also start to leak liquid out the filter.  So put the sticker on, when you shower, take it off when you're done.  Enough about my wafer and bag preferences   Let's talk about changing the wafer and bag.

Get several warm, wet washcloths ready and a small dry towel as well.  You will need these later.  I recommend sitting on the toilet when you change the bag.  That way the mess can fall into the toilet.  You may find that certain times of the day you have little or no drainage (based on when you last ate).  It's a good idea to time changes for those times.  First remove the old bag.  You can just pull it off, but after doing this a couple times your skin will get very irritated and will probably get sores as well.  Use adhesive remover.  I really preferred the alcohol-free adhesive remover as it did not burn.  Some of these even have a nice citrus scent to them.  Once the bag and wafer are removed gently wipe the area with a wet washcloth to remove any pieces of the wafer or adhesives that remain behind.  If you have used stoma paste it will likely be quite messy.  If you plan on using paste again, it is alright to leave some paste on the skin.  So get off what comes easily.  Scrubbing too long will just irritate your skin.  If you do NOT plan on using paste, then leaving paste behind will make the area less flat and harder to stick too.  You will need to remove all the past in this case.  Be patient, the warm wet washcloths will do the trick.

Next get your wafer ready.  (You may eventually do this prior to removing the old one, once you get good at eyeballing the size.)  If you choose the wafer that needs cut, first cut it to size.  Be careful to make smooth cuts and be sure to leave just enough gap that the wafer will not actually touch the ostomy.  If it touches the ostomy, especially with rough cuts, it will irritate the ostomy and make it bleed.  If you use a moldable wafer, then mold it to the right size by rolling the extra material over the top of the wafer.  If you roll it underneath it will not adhere properly.  Once you've got the wafer cut, get it warm.  It will stick much better when it is warm.  So stick it under your thigh or armpit while you get the site ready.

To get the skin ready you need to remove any hair.  You may get away with this step every-other change.  You may get away with this step even more frequently if you are a female or don't have much hair on your belly.  Do NOT use alcohol based shaving cream.  It will burn the skin.  The best way I know of is to sprinkle baby powder on the area (not on the stoma itself) and use a disposable style razor to shave.  The baby powder will act as lubricant and will not burn the skin.  If you do not shave off the hair, it will hurt next time you remove the wafer.  It may also cause sores from pulling the hair.  Once you are done shaving, clean the area with one of the warm wet washcloths.  Then pat it dry with the towel.  You are almost ready to apply the wafer and bag.

Use a skin prep to get the skin ready.  The skin prep protects the skin from moisture and also makes the adhesive stick better.  This leads to less skin irritation.  Once you are done with that carefully sprinkle stoma powder around the stoma on any sore areas.  Do NOT sprinkle it directly on the stoma.  Your stoma needs to be moist and pink, not dried out by the stoma powder.  Gently rub it in the areas that need it with your finger or a cotton swab.  If you sprinkle too much of this on, the wafer will not stick well, so only use it where needed.

Now to apply the wafer and bag.  It is easier to connect the bag before the wafer is pasted on your skin.  Connect the bag, being sure to turn it the way you would like it.  Next peel off the backing from the wafer.  Hopefully you have been warming the wafer up so it sticks well. Next, spray some adhesive on the wafer.  Hollister sells this in a small can.  It doesn't take much of this, just enough to get some on the entire wafer.  Let the adhesive dry a little so that it is tacky to the touch.  If you do not let it dry enough (or too much) it won't stick very well.  Once it's tacky stick it on your skin.  If your stoma leaks while you are waiting for the adhesive to get tacky, clean and dry the area and apply some more skin prep.  Then add spray to the wafer and let it get tacky.  One trick I found when applying the wafer to my skin was to sit up really straight to stretch out the skin on my belly a little.  I found if I didn't do this, the wafer may pull off the first time I stretched.

Your directions may require additional steps to place barrier rings prior to putting on the wafer.  The purpose of those is to make your skin more flat so that the flat wafer will stick properly without a gap underneath it.

How do you know when to change the bag again?  With practice you will find what works for you.  The wafer will generally stick well for 3-5 days.  If you are at the end of the time that usually works for you, change the bag.  You don't want to find it coming loose at an inconvenient time.  I could always tell my wafer was starting to get a little leak under it because it itched.  To protect your skin, always change it if it starts leaking and use skin prep.  In an emergency (like if I was out in public and knew it was getting leaky) I would stick some stoma paste under the wafer where needed.  I only used that as a temporary fix, because it was so sticky and hard to get off of the skin.  It's a really good idea to always take a small bag of supplies and a plastic bag for your trash with you.  You never know when you may need it.

Got any other tips you care to share?  Please leave your comments below.  Thank-you.

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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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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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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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The beginning of a bad thing

10/11/2012

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I was an Air Force Medic, a 4N051 (that was my Air Force specialty code) to be exact.  Being a medic, I worked in the hospital located at the U.S. Air Force Academy near Colorado Springs, Colorado.  It was a wonderful place to live.  My family enjoyed the outdoors, regularly hiking various local trails and visiting lakes and reservoirs.  Most people aren't in the hospital for no reason.  Generally they have one or more health problems they are dealing with.  As a medic I cared for these people.  Essentially my job was similar to that of a CNA in the civilian world, with added duties such as drawing blood, starting IVs, and maintaining EMT registration.  

Every job has risks, and the health field is no different.  They really don't know was causes Ulcerative Colitis.  Yes, they can describe a bundle of signs and symptoms which are used to diagnose the condition, but they really don't know what triggers it.  I personally think it is due to a bacteria imbalance, which leads to the other problems.  Whether I somehow picked it up at work or someplace else, my first symptoms started while serving in the Air Force.

In August of 1998 I began having diarrhea.  I'm not talking about 1 or 2 episodes.  More like waking up a dozen times at night to run to the bathroom.  I went to sick call seeking treatment for this horrible diarrhea, which was the worst I had ever had in my life.  When the doctor entered the exam room, he was brief.  He asked what was wrong and I expressed my concern over the amount of diarrhea I was having, and let him know I was scheduled to work that night.  He just looked at me and said something like 'you look fine, I'm on call tonight; call me if it gets worse.'  That's it!  No testing, no samples, not even some blood drawn.  If you have ever served in the military you know that an E-2 or E-3 is not about to page an O-4 in the middle of the night, when he was already told 'you look fine.'  I really felt put out by this Major, and thereafter referred to him (to my colleagues) as "Dr. Cuckoo".

This reminded me about the 2 times I went to the nurse's office when I was in school.  In 3rd grade I had a stomach ache and went to the nurse's office several times.  She kept telling me that I wasn't sick.  After I finally vomited on a kid standing in the way of the bathroom door, I was sent back to the nurse's office.  She announced "you're sick."  Later at another school I began feeling feverish and ill during 7th grade.  I went to the nurse's office a couple times, but she refused to let me in to see her, stating she was too busy.  Finally one of my teachers pulled the nurse out of some 'important meeting' and demanded that she see me.  I was sent home with a temperature of 102.5 and later diagnosed with strep throat. Some people look very sick when they don't feel well, with other's you can't tell as easily.  Apparently I fit into the latter group.  Maybe I should have put on my saddest face and cried each time I went to the nurse or doctor's office.  In any event, I didn't.  I reported for work as usual that night.

At work I spent a lot of time in the bathroom.  My coworkers knew that I was not playing around.  I always arrived to work early and did my job well.  One of my patients that night was a small child, whose mother stayed with her.  This child's father happened to also be a medic at the same hospital.  He came up from the ER, where he worked, to check on his child and say hi to his wife.  He wanted to see the medic taking care of his kid.  He was really upset when my coworkers told him that I was in the bathroom sick, that I had been to sick call, but was there taking care of his kid.  Hospital workers know you shouldn't take care of patients when you have something that might be contagious.  He invited me to come see the doctor he worked for in the ER.

In the ER the doctor immediately got upset with me, asking why I had not gone to sick call as was the hospital policy.  The medic stepped in, explaining that I had in fact gone to sick call and been told to go to work.  The doctor sent me home with some pills for nausea.  I hadn't actually thrown up yet, but was feeling nauseous.  Again, no testing of any kind was done.  I really felt put out, and later found out that in my chart the doctors put there was no blood in the stool.  Why would they put that when they didn't even check it?  I was frustrated and feeling really put out by 2 doctors at the very hospital I worked so hard at.

The diarrhea didn't stop.  It lasted about a month that time.  Nurses at work gave me advice to stay away from dairy products and try the brat diet (bananas, rice, applesauce, toast).  I did so, and after about a month the diarrhea finally went away.  Or did it?  I continued to have diarrhea 2-3 days per month.  Sometimes it was worse than others.  It continued following my honorable discharge from the Air Force in May of 2001.  

By then I had already learned to stay away from grape juice and other highly sweetened drinks.  I would soon have to stop drinking orange juice as well, noticing that it aggravated the situation.  Other foods were added to the do not eat list, such as lettuce and other raw foods high in fiber.  I kept a roll of toilette paper in a bag under the seat in my car, and another in the minivan.  Unfortunately these sometimes came in handy on drives in uncivilized parts of Idaho.  When I went hiking, I kept a roll in my backpack.  I didn't take this problem seriously.  After all I had seen 2 doctors who obviously didn't think my problem was very important.  The doctors and I would both start to take the problem more seriously a few years later.


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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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