Pre-Surgery and Re-doing tests

With the aid of all of the medications I was taking i.e. prednisone, salofalk and immuran etc. I was finally in remission.  Hallelujah!

But it didn't last for very long. Each time I tried to wean off of the prednisone I would get down to 10mg or so and the Crohn's Monster would flare up again.  This went on for a while and it was really disrupting my life.

Finally my Gastro and surgeon came up with a plan.  We had tried the medications for two years, and it wasn't helping so it was now time for a surgical intervention.  This is a picture of my pre-surgery tummy, never to be the same again.  I was to be hospitalized through the weaning process, taking me down as low as was possible in order to have a bowel re-section, my first one.  There were also many tests to be run and it was easier for scheduling them as an in-patient, they were done faster than if I was at home.  The picture from my last post with the TPN was taken during this hospital stay.

As the weaning process went on I became much sicker and was in tremendous pain.  I had been in the hospital for a while (again on the geriatric ward, but a private room this time, no one wanted me to lose another room mate again) and requiring pills and shots for the pain.  My doctors didn't want my body to build up a tolerance to the medication since I would really need it after the surgery, so I was given the old "don't take the shots unless it's absolutely necessary" talk.  That didn't bother me at all.  I wanted them to work when I needed them too.

One of the tests I was to have was a Barium Enema, or a Lower GI test.  These are done to diagnose diseases of the colon or to check on progress of an already diagnosed illness.  Barium, a contrast material fills the colon and x-rays are taken.  There are two types.  A Single Contrast is when the barium, through a tube, fills the colon making it easier to see the outline of the colon and larger abnormalities.  A Double Contrast, or Air Contrast, is when the barium fills the colon but is then drained, only leaving a thin layer covering the inner lining of the colon.  Air is then pumped into the colon making it easier to see the inner lining and smaller details of the colon i.e. pouches or strictures.  I was having both Contrast test done to check the entire colon.  In order to prep for it, you can only eat clear fluids (i.e. black tea or coffee, ginger ale, jello etc.) for a couple of days before the test and must take laxatives (liquid and pill form) and tap-water enemas.  The colon must be as clean as possible in order to get accurate results.  For me personally, the preps for these tests are far worse than the tests themselves.  Not so for the double contrast barium enema, it hurts.

It was the morning of my test and I was in severe pain.  It was radiating into my back and felt like my body was being squeezed all the way around in a vice.  One of my nurses came in with an enema bag that looked like it could hold 3 bags of milk.  I had already taken the liquid laxatives and this one was a warm, soapy tap water enema.

My pain was so bad at the time that the idea of holding that much water in my colon for as long as I could was just something that I couldn't do.  She went and got me some pain medication, gave me 20 minutes for it to work and came back.  I still wasn't happy to see her, but it had to be done.

The worst part of this test is when your colon gets filled with air and the radiologist presses down on your abdomen with a paddle in order to get the pictures just right.  Finally my test was done and I was back in my bed.

I had the next day off but had another test the day after that.  A CAT Scan.  At that time Guelph didn't have a CAT Scan machine so I had to go to Waterloo to have it done.  My Dad was going to take time off work to take me.

The morning we were to go I was so sick.  I was vomiting, weak and in pain.  I just felt horrible, but there was no way that it could be cancelled.  It felt great though to be in a car again, it had been almost a month.  We made jokes about not going there or back to the hospital, It was really great spending the time with my Dad.  When I was first diagnosed and was in the hospital for months, he would bring his lunch, and come up to visit me during his lunch hour.  It meant so much to me.

When we got to Waterloo I had no idea what to expect, it was my first CAT Scan.  After we registered a nurse brought a glass a pitcher of liquid and told me that I had to drink it all.  It tasted horrible and because of my nausea I vomited almost half of it back up.  It was a horrible experience.  I was having hot flashes, then the chills, I felt so sick that any other day it wouldn't have been so bad.  Finally when my name was called my Dad and I got up, we were put into another room and I had to put on a gown.  I passed him my clothes to be locked up and he helped to ANOTHER room.  They told me that I need to have an i.v. put in for the second contrast material and they couldn't use my TPN for it.  Well by the 11th attempt at getting one in I told them to get an anesthetist, because I wasn't going to be poked one more time!  They even looked at the veins in my feet!  That doctor showed up and bam, first shot he got it in, he was my hero!

They put me on the table, they went into their room behind the glass, and I yelled at them to stop.  One of them ran in and asked me what was wrong and I told her that it felt like I wet my pants!  She said she should have warned me about that, that it was just the dye going through my body into the blood vessels. Whew!

The other two came out of the little room and asked me when the last time I had a Barium Test was.  I told them that it was two days ago, and they unhooked my i.v. and sent me back to Guelph.  You can't have a CAT Scan within a week of having a barium test because the two different types of contrast work against each other.  You have got to be kidding!  Didn't anyone from Guelph General know that?  I was so mad and my Dad had smoke coming out of his ears.  When we got back I crawled into my hospital bed and he marched up to the nurse's station.  I hope he gave them a piece of his mind because I had to go through all of it again the next week after all of the barium was out of my system.

The moral of this story is that no one knows everything.  People are going to screw up, even doctors and nurses, and you might be the one that suffers, but you just have to take the blows and move on.  When I did go and get the CAT Scan we found out that my gall bladder was three times too big and needed to be removed.  They wouldn't have seen that when they did my re-section, so it's a good thing that I had that test.   

The Troubles with Tracey!

After spending the summer and beginning of spring in the hospital I was ready to go home.  I was off work on a long-term disability and wanted to get back to that also.  Every time I said I wanted to leave I heard the same three words, "Maybe next week".  I thought I had enough bowel rest to last me the rest of my life, and removing the feeding tube from my nose could not happen soon enough.  I never wanted to look a bowl of jell-o or broth in the face again, but "maybe next week" would have to do.

Then a miracle occurred, it was finally next week!

But hold the phone!  My doctor said I could go home if I wanted to, but my tube was going to be staying right where it was, in my nose.  He actually smiled at me when he added that part.  Oh well, it could be worse right?  I was finally going to sleep in my own bed again!

The day before my exodus all of the plans were made.  A new pump was going to be delivered to my house, all of my scripts were written out, my family brought all of my presents and other belongings home and I said my good-byes to the nurses and other patients that had become like family to me.

Walking out of there knowing I didn't have to go back was blissful, but it almost felt like I was doing something bad when we drove away.  Seeing the streets and people coming and going was kind of strange, everything looked so clean and new, but as we drove into my driveway I thought I was going to burst with joy!

As I tried to walk up the stairs to my room I realized how long it had been since I had done any exercise.  My legs were shaking, my heart was beating and I had to rest part way up.  That gave me and our dog "Cookie" time to catch up and cuddle.  My room seemed smaller, but it was just perfect.  I laid down and thought I could feel the springs in my mattress, but I passed right out.

When I woke up it was back to reality time.  My new pump had been delivered and I was plugged back into the wall.  I had named my pump "Jo-Jo" in the hospital and christened this one the same.  The cord was not even ten feet long, so that was as far as I could go from the outlet.  This depressed me immenseley so my Dad got an extension cord.  I could move about the whole main floor without having to un-plug and re-plug myself back in whenever I wanted to go into another room. The battery didn't work very well, it wouldn't hold the charge.  My Mom mixed up my liquid TPN (Total Parenteral Nutrition) meals in a big bowl, then poured it into my bottle which went through the pump, up the tube and into my stomach.  She was awesome for doing this for me every meal, every day.  She also made my jello and broth.  When it was breakfast, lunch and dinner time and I was hungry (I wasn't always) I would get some help with my pump down the stairs and eat my liquid meals down in the rec room when everyone else was "chewing" their meals upstairs.  Everything smelled so good!

For being so good to me I shouldn't have paid my Mom back by grossing her out.  I was curious about my tube.  I'm a very curious person, that's just who I am.  I was standing in the powder room on our main floor looking into the mirror with my mouth open wide.  I called for my Mom to come join me for a minute.  She came and stood behind me as I told her to "Look at this" and opened wide again.   At the back of my throat was my tube, it was right there. She thought it was gross, but laughed.  But it kind of surprised me.  I knew that it would be there, but seeing it hanging there was weird.


One afternoon as I was in my room watching a movie (a friend that worked at a movie store brought me an unlimited supply) the smell of KFC came wafting into my nose from under my door. Everyone in my family had plans that night so my Dad picked up dinner.  Down I went to the rec room to eat my broth, my mouth watering like crazy while they were enjoying "finger licking good" chicken.  The horror.  Out they all went, it was the first time I was home alone.  The doorbell rang so I went to answer it, there were three of our neighbours standing on our porch.  I opened the door and they asked for my Mom.  I told them she was out and that I would take a message for them.  They said not to worry about it and walked down the driveway.  Then I heard it.  "Look at her", "What's with the tube?", "Does she have Cancer?", they didn't come by to see my Mom, they just wanted to get a good look at me.  I heard the rumour mills start spinning.  Why can't people just ask questions about things they don't know or understand, why do they have to just make up stories and whisper among themselves?  I have never understood that.

Shutting the door, I realized I was thirsty and opened the fridge.  There in front of me was the leftover chicken.  You know in movies when they show an Angel on one shoulder and a Devil on the other in times of temptation?  That was happening to me and as hard as I tried to not give in, the Devil won.  I was just about to find out why you aren't supposed to eat with a feeding tube in your nose.  The KFC skin is my favorite part and I was thinking what's a little piece going to hurt?  And then the idea of just chewing it and spitting it out came to my mind.  Just tasting it would be alright.  I ripped a little piece of skin off and popped it in my mouth.  Oh wow, it was heaven!  Then without thinking I swallowed.  Big mistake.  The skin got stuck on the tube and I started to choke.  You can't imagine the things that were flashing through my mind.   My parents would kill me if I died from something so stupid.  I saw newspaper headlines in my mind that read "Moron Girl Chokes On Chicken Skin",  panic had set in.  I was coughing and coughing and finally it came loose.   Sitting on the floor I thanked God for not taking me and sparing my family the embarrassment of such a stupid move on my part, and swore not to eat ANYTHING other than my broth until I had my doctor's permission.

It had been a long night and I was feeling pretty weary.  Again, without thinking, I took all of my bedtime medications.  These included, amomg others, a sleeping pill.  It's very hard to sleep with a tube laying in your throat.  Unplugging myself and walking towards the stairs I realized there was no way that I was going to be able to lift Jo-Jo and carry him all of the way upstairs.  But I tried anyway.  When I made it to the first landing (only two steps) a break sounded good, so I sat down and tried to pump myself up for the next big hurdle.  Then I woke up in my bed the next morning, realized that I must have made it here by myself, and felt really proud for a few seconds.  Who was I kidding, there was no way I got there myself.  I found out my Mom carried Jo-Jo and my Dad carried me.