Feeding Time!

Wow, it has been a long time since I last posted.  Sometimes, well a lot of times, Crohn's is the last thing that I want to think or talk about.  I have been feeling pretty good lately so I like to find other things to occupy my brain.

But recently I found some pictures that my Dad took to memorialize some of the things that I went through after Crohn's entered my life.  This is one with my niece Banner, me and the nose-feeding tube and pump that I had in the hospital and was sent home with.  I named it Jo-Jo after a friend of mine that had passed away.  Having it was a real pain.  Not only was it painful at times, making my nose and throat sore, but being plugged into the wall not being able to move around freely really sucked.  It was one of the low points when I was diagnosed and the doctors were trying to get me back to health.  But it's hard to be angry at something that is named after someone you loved, so it helped me deal with having it.

Everyday my Mom would mix up the liquid food that went into the i.v. like bag/container that fed me.  She would mix the powder with water in a big bowl.  There couldn't be ANY little clumps or bumps in it as that could cause obstructions in the tube, and once it was in there you really didn't want to have it removed and replaced.

You can also tell from this photo that my face is rounder than usual. That is called "moon face" and was a side effect of the Prednisone that I was taking.  When I was diagnosed Prednisone was called a "wonder drug".  It really was in a lot of respects; being an anti-inflammatory it helped with inflammation healing the open sores and muscle in the bowel, it made me ravenously hungry and thirsty, it gave me alot of energy and  a feeling of wellness.  But the side-effects depending on the dosages were not pleasant.  I had hallucinations on high dosages, severe nervousness or restlessness.  If I was sitting down I wanted to stand up, if I was standing up I wanted to sit down, if I was reading I had trouble concentrating, it caused severe indigestion and I would get a head rush spinning feeling when I stood up too fast, dreaded acne and it sucked the calcium from your bones causing a high dose supplement to be taken.  The "moon face" was the most noticeable and almost anyone I saw at that time asked me if I had just come from the dentist after having teeth pulled.

In another post I will share my experiences before and after my very first bowel surgery.  Ciao for now!

You Needled Me

After being released from the hospital, I would wake up every friday morning at 7:30 with a technician from the lab sitting on my bed.  She was there to take my blood.  She was really nice, but the experience wasn't.

I am totally terrified of needles to this day, and I have had thousands of them.  In the hospital I had to hold my Mom, Dad or sister's hand.  If they weren't around I would put a stuffed animal over my face to hide and pretend I wasn't the one getting poked.  On top of the pain shots I was having blood tests everyday, iron and B12 shots.

Due to the scarring and damage to my intestinal wall, vitamin B12 was not naturally absorbed.  To regain normal levels I required shots.  I still get one cc every three weeks.  Vitamin B12 is very important for our brains and nervous systems, and most people with auto-immune deficiencies require a synthetic version by injection.  Again due to malabsorbtion and rectal bleeding iron shots were given.  Iron is stored in the bone marrow, liver and spleen and are fundamental to all organ systems.  No matter how much B12 or iron-rich foods I eat,, my body does not absorb them. 

 

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.