Since I was diagnosed with Ulcerative Colitis and Epilepsy in a 2 week period in 2005, I have tried to find a connection between the two. I strongly believe the Asacol I was on greatly contributed to my seizures. Many times I have wondered how else they were linked.

Today I found an article that relates intestinal problems and epilepsy. Furthermore, it refers to my exact type of epilepsy and problems with the amygdala. I found this very interesting and wonder how many more people out there suffer from abdominal epilepsy, temporal lobe epilepsy, ulcerative colitis, or some combination of those.

Read the article and let me know what you think. I would be really interested to find anybody in a similar situation.

​http://www.meridianinstitute.com/abepilep.htm

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.

After about 6 months with the temporary loop ileostomy, I was finally scheduled for the takedown (reversal) of the ileostomy.  The surgery went as planned.  I stayed in the hospital a little over a week just to be sure my body was recovering well.  It took the better part of a week for my urine output to really get to where it should have been.  Nothing some extra IV fluid didn't resolve.  After I got out of the hospital I continued regaining more strength.

It seems that in the hospital people like having their own room.  Perhaps it is an issue of privacy for some.  In years past when most rooms had 2 or more beds in the them it seemed that a private room was a privilege reserved for V.I.P.'s.  What constituted a V.I.P. could depend on how many rooms were empty, how much money the person donated to the hospital, if the person worked in the hospital, or what rank they were in the military (at military hospitals anyway).

I recall working as a medic on a medical-surgical inpatient floor in the Air Force.  The nurses would generally let the medics make the room assignments, but since they outranked us they would review our decisions.  Several of the female nurses had a policy of not letting women that had any of the various female surgeries, have private rooms.  It seemed heartless to make them share a room when we had so many empty beds.  Their reason (not mine) was that many women with a private room would expect to be waited on and enjoy their hospital stay so much that they would stay extra days (this according to the female nurses I worked with).  However, their theory was that if they shared a room, the two women would drive each other crazy and demand to be discharged the day after surgery.  

When I was a hospital patient I had a couple different roommates the first few days.  The curtain remained drawn between us and for some reason they didn't like to talk much.  They were older men, and obviously didn't care or have the strength to speak much.  Then I got a new roommate.  His name was Jimmy.

I was 32 years old and Jimmy was about 10 years younger than I was.  It was like having a little brother in the room.  Jimmy had been in the hospital longer than I ever was.  He had gone through many things and he and his mom talked about the trials he had.  It was nice to have somebody to talk to in the room during the many hours when there were no visitors or phone calls.  I also found it motivating to share a room with somebody so sick.  I think we motivated each other to get better.  I spent 40 nights in the hospital that year and Jimmy was probably my roommate for about 30 of them.  I recall spending many hours wondering how all this pain and suffering could happen to me.  It was a blessing to have a roommate that had been through more than I had and was often sicker than I was.  I remember one night how he begged the nurse for some juice.  She reminded Jimmy that he wasn't allowed to have anything to eat or drink.  Jimmy said that he just wanted to taste something and that he wouldn't swallow it, rather he would spit it out after tasting it.  

The parable of the rich man and Lazarus (from Luke chapter 16) came to mind.  In the parable the rich man and a poor man named Lazarus both die.  The poor beggar goes to heaven with Abraham.  The rich man is in hell, but can see Lazarus, the poor beggar.  The rich man pleads for Lazarus to dip his finger in the water and cool his tongue.  It seemed I was seeing such suffering before my very eyes.  I have been hungry many times, and have also been sick so many days that food didn't seem good anymore.  But I have never gone so many weeks without eating that I just wanted to taste some juice without swallowing it.  Jimmy got the juice he requested and only tasted it, as he promised.

During one of my hospital stays that year I was given a private room.  The staff said they were sorry I had spent so much time in the hospital.  I only had the room for a few hours while I waited for surgery.  I asked if Jimmy was still there.  The reply came that he was.  I asked if I could share a room with him after surgery.  I don't think the staff really understood why I would rather share a room, but they didn't understand the things I learned from sharing a room with Jimmy.  When I returned from surgery, I again shared a room with Jimmy.

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.

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.

After I had been in the hospital a few days my ostomy bag leaked and had to be changed.  My first experience at changing an ostomy bag wasn't a good one.  I really didn't know much of anything about ostomies.  During my four years as an Air Force Medic, I never had to change one.  In fact, I probably only emptied one a time or two.  The nurse did my first change for me and discussed the steps she was taking.

The first step was removing the old ileostomy bag. I don't remember if she used any adhesive remover or not.  She probably did, as I don't recall it being particularly uncomfortable.  Then she explained that ostomy powder needed to be applied.  She sprinkled the ostomy powder all over the area that had been covered.  She then took the new wafer, cut it to size and applied it to my abdomen.  Her final step was putting the bag on.  Since I had recently had my colectomy, my abdomen didn't feel that good when it was pressed on.  The nurse had to press the ileostomy bag pretty hard to get it to snap into the wafer she already applied to my abdomen.  It was uncomfortable to say the least.  I didn't know any better way of doing things, than what I had just been taught.  

I would learn better techniques from a series of ostomy nurses.  My favorite ostomy nurse was one that actually had an ostomy.  She was more patient with the many questions I had and explained many good techniques.  Her experience with ostomies made a huge difference.

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.

We checked in at the hospital.  My parents took time off work to be there.  I really didn't quite understand why everyone seemed so worried.  I was so excited to get rid of my large intestines, that I wasn't nervous.  Blood was drawn.  My hematocrit level was only 26.  Sometimes people receive blood transfusions as this level.  The surgeon asked if I walked in that day.  I replied I had, and didn't feel any more tired than I had for months.  It was decided that for now at least, I didn't need a blood transfusion.  The long night of bowel prep had left me dehydrated and the anesthesia resident took 3 tries to get my IV started.  She started it on the inside of my wrist.  I always thought this spot would be extra sensitive, but found out that it really didn't hurt very much at all.  

I was asked if I would donate my large intestines to the Huntsman Cancer Institute.  I didn't have cancer, but they could use the tissue for research.  It seemed like a noble cause, and so I didn't ask for my intestines in a jar.  I had joked that I wanted them mounted like a snake skin on the living room wall, but my wife was saved the embarrassment.  Finally everything was done and it was time to go to the operating room.  As they began to wheel me to the operating room I did get a little nervous.  This was the first time I had felt nervous about surgery.  They gave me some medicine through the IV to help me relax.  The medicine made me talk much more than usual.  In the operating room I was asking about the types of monitors the anesthesiologist had and pointing out different things in the room.  When my surgeon came in wearing a mask, I remarked that he looked like a duck.  They probably all got a good laugh out of the silly things I was saying.

Finally a mask was put over my mouth.  I deeply breathed the oxygen for a couple minutes.  I'm sure when the time was right the anesthesiologist added some medication to my IV, intubated me and put me on the ventilator.  I next awoke in the recovery room.  The first thing I remember was somebody telling me to be quiet.  That seemed to be a common theme when I woke from anesthesia, either being told to be quite or shut up repeatedly.  I'm not sure if I just bothered them, or if it was affecting my breathing and oxygen levels.  As I woke up I was surprised at the lack of pain.  I have cared for many patients with much smaller abdominal surgeries and seen people complaining of a great deal of pain.  I thought I would have a great deal of pain, but did not.

I was given a PCA (patient controlled analgesia) pump.  This pump allows a person to hit the button for more pain medication.  Typically it is programmed to allow for an additional dose every 10 minutes.  I was also given pain medication via an On-Q pump.  I was told this was a new device.  It had a small catheter, which was inserted under the skin at the end of my surgery.  The catheter led to a pump which was about the size of a softball.  This pump would gradually squeeze in the pain medication over several days.  I'm not sure when it got clamped, but several days after my surgery the surgeon discovered that somebody had clamped the pump.  I hadn't been getting the pain medicine for some time.  The first several days after surgery I also didn't use the PCA pump very much.  Several nurses and doctors asked me if I had been shown how to use the pump as I had only hit the button a couple of times.  As I said, I was amazed at how little pain I had.

I had a bag attached to my abdomen, an ileostomy leaked stool, or at least digestive juices into the bag.  (I wasn't allowed to eat anything for a couple days and then only clear liquids at first.) It didn't seem very real at first, I guess because it's not a normal thing to have.

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.