A Little Boy and his Third Appointment.

Today I went to the doctors to have a check-up and to get my B12 and iron shots.  Of course they lost my vial of B12 and the nurse had to borrow a cc from someone else.  She actually got mad at me for not bringing anymore with me and told me in no certain terms that she wouldn't give me my shot next time.  They lost my vial, not me!  Oh, well.
After I got back to my chair my friend asked me if the needle hurt and nodded at a little boy.  I looked at him and said "It was a piece of cake, I didn't feel a thing".  That was a lie, she is a stabber, lol.  As he was called into the "needle room" I found out that today was the third time that he and his parents had come for him to get his vaccinations.  He had freaked out so badly the first two times that his Mom put on the brakes and stopped him from getting his shots.  I had a real problem with that.  The first time that they went, and with the Mother telling the nurse to stop because he was losing his mind in fear and not going through with, the Mom made it sound like it was going to be a bigger and worse deal than it really was   No wonder he was ten times more afraid the second time around.  Again he was so out of control that he didn't have it done.  By today the poor kid was completely terrified because of his Mom's reaction, not because of the needle.  I don't have children, but if I was ( I should say when I was) freaking out about having needles and i.v.'s, if my Mom or Dad would have stopped it from happening because of my fears, it would have built up in my mind to the size of a giant and I would have become ten times more afraid than I was in the beginning.  They should have just bit the bullet, held him down and stuck him.  In the end the nurse gave him a local anesthetic, a NEEDLE, to make sure the NEEDLE didn't hurt.  What part of that makes sense?  Eventually he came out with a lollipop, sniffling and if looks could kill I would be dead.

The Joys of Thrush

When I finally got around to reading the stack of pamphlets I was given when I was diagnosed, I was really angry.  I knew what Crohn's was, that there was no cure and that I would have it for the rest of my life, but while I was reading all of that in black and white it finally HIT me!  I guess I was thinking that as soon as I got healthy again I would just pick up my life where I had left it and continue on as if nothing ever happened.  That was what I was planning on doing, but knowing that I could get sick again really made me mad!  I threw the pamphlets on the floor and cried.  I really cried.  I cried because my boyfriend didn't kiss me with the tube in my nose, I cried because I couldn't eat corn on the cobb ever again and I cried for the Tracey that I felt was gone.  A new Tracey was born, the Crohn's patient Tracey.

My Mom came into the livingroom to consoled me, and when I told her how angry I was she got up and left.  She called me to go into the rec. room off the kitchen and handed me a meat tenderizer.  To get the anger, saddness and frustration out she told me to hit the couch cusions with it.  I wailed on the couch and beat it until I was exhausted.  To this day I sometimes do the same thing, it really works.

My parents were going up to a cottage in Sauble Beach the next day, but I had a doctors appointment, so my sister and her now husband were going to bring me up on the weekend.  I saw my doctor, got my B12 and iron shots and went home.  The next day my mouth was a little sore, but I didn't really think much of it until the next morning when it was really bothering me and it hurt to swallow.  When I looked in the mirror I couldn't believe my eyes!  My tongue, gums and the sides of my mouth had a thick white build-up with some BLACK spots!  I was freaking out.  I called my Gastro and explained to the secretary what was going on, and that I was supposed to be going to the beach in a few hours.  She told me to come in on my way out of town so I finished packing and was ready when my sister came to get me.

I knew that my Gastro's secretary had told him what was going on by the smile on his face.  He actually laughed at me when he saw it.  I told him it wasn't funny and that it hurt and looked worse.  He said it was "thrush".  Of course my first question was "What is that?"  He said it was a yeast infection in my mouth, that was probably caused by a couple of things.  Firstly, because Crohn's is an auto-immune system disease my immune system was weakened, secondly because of some of the medications I was on such as antibiotics, and thirdly I was under stress.  He said it would go away with another medication and started writing out the script.  He told me he was giving me these to suck on, like losenges and not to swallow or chew them.  Like I always did, I asked him how they taste. That question made him giggle, then close his eyes.  He opened them and with a straight face he said to me  "where they are usually used there are no tastes buds" and just stared at me until it sunk in.  I was going to have to suck on vaginal suppositories for vaginal yeast infections.  I couldn't believe my ears!  With a smirk I thanked him and went to get my script filled.

The pharmasist that filled it said she believed that my doctor made a mistake and that she had to call him.  I asked "what mistake is that?".  She said that he had written it out for me to take these orally and laughed.  I told her it wasn't a mistake and opened my mouth to show her.  She stopped laughing, apologized and went to fill it.  As I was leaving the pharmacy with my bag, I heard laughter.  I was happy someone was getting a kick out of it.  It would seem they weren't the only ones.  My family thought it was pretty funny too.  At the cottage everytime my Mom told me it was time for my losenge, someone would laugh.  It was kind of funny.

Luckily if you get it nowadays, there is a liquid that you can use to get rid of thrush.   

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. 

 

Tube Free!

After hoping and praying that wonderful day that I would be tube free finally came.

My Dad took me to my Doctor's appointment, and as we waited in the waiting room there was a kid that kept staring at me.  I was in a bad mood because I was sure he would tell me "two more weeks Tracey, just give it two more weeks" as I had been hearing for months.  So as this kid was staring at me, something to which I had yet to get used to, I had one of those moments where the little Angel on my shoulder lost to the little Devil on the other.

At the time I knew it was a horrible thing to do, but I was just so sick of it all.  Sick of eating broth, sick of being plugged into the wall, sick of not being able to go ANYWHERE without being stared at like I had three heads and sick of Crohn's Disease.  So this poor kid ended up coming face to face with all of my frustrations.  I did the unthinkable.  As he sat there staring, I pulled my tube in and out of my nose completely grossing him out.  He tapped his Mom on the shoulder and told her to look at me.  Of course I had stopped by then, and he got in trouble for staring and pointing at me.  The minute she looked away, I did it again.  And again he tapped on her shoulder, and again he got in trouble.  I was just a kid myself at the time and I did feel bad about it and even looked for them when I left the office to apologize, but they were gone.

You would think that Karma being what it is I would have heard the "Two more weeks Tracey" speech again for my bad behaviour, but after being thoroughly checked over my doc smiled at me.  He didn't even have to say the words, I knew that damn thing was coming out!  It was a much more pleasant experience than when it went in, I can't even explain the sensation of it being removed, all I knew and cared about was that I was going to be able to chew my next meal!

It's funny looking back at that moment, how something as simple as chewing made me so happy.  I was given pieces of paper with lists of food I was able to eat, and an even longer list of things NOT to.  I couldn't have any seeds or nuts whatsoever.  The idea being that the pieces could get stuck in the intestinal wall causing an infection.  There were meats, fruits and vegetables to avoid also.  I was going to live by that list if it killed me.  I was planning to never set foot back in a hospital again.  Those lists went up on the fridge the minute I got home, and one was put on my boyfriends parents fridge too.

I was also being weaned off of the prednisone, so my face would eventually go back to normal, I would lose the moon face which would be a really good thing.

I seemed to be under the impression that my life would just go back to normal; that things would be the way they were before.  I hadn't read the pamphlets yet.

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.










 

"Home Away From Home"

There are only so many things that you can do in the hospital to occupy yourself, especially when you are in there for months.  I had to get creative and make it as pleasant of an experience as I possibly could.  I was only eighteen and had never been away from home for that long before.  I brought my own pillows, my comforter, my stuffed animals and always wore my own clothes.  No hospital gowns for me, never, unless they made me wear one for any tests.  The more normal I looked and having my own belongings around me, the more normal I felt.

I had a lot of visitors and was pretty spoiled with presents.  I had loved Elephants before my diagnosis, but this was when my collection really started to grow.  I was given all different kinds of them, from stuffed animals to boxer shorts with pink elephants on them.  My family members came by pretty much everyday, if not one then another.  My Dad would bring his lunch up to the hospital and spend time with me.  That was my favorite time of the day; when he came.  One lunch hour he came by and brought me an Elephant.  He apologized, said they were running out of ones to buy in the Gift Shop and handed me a little plush Elephant baby rattle.  It was very adorable and meant the world to me.  I still have her.  My Dad and I hadn't always gotten along very well before Crohn's entered our lives.  Bad experiences or situations can sometimes bring some really good ones along with them.  We became closer because of my diagnosis and the time we spent together after it.  I am strangely grateful to my disease for some things, and our relationship improvement is one that I am truly grateful for.

My older sister has been like a second Mom to me for a huge part of my life.  We aren't even a year apart and were treated like twins growing up, dressed alike, the same presents but in different colours, stuff like that.  She would come and stay at the hospital even if I was asleep.  She always has a book in her purse so she would just sit there and read until I woke up.  My Mom was there a lot of the time too and we have had some very humorous situations occur during my hospital stays.  I can imagine my diagnosis put stress on my family members.  When I went home from the hospital someone always had to be there for me to help me do things, I became very dependent on them.  They were very good to me and I love and appreciate them so much for it.

Sometimes I would get so bored there in the hospital though.  I would flip the mirror in my table up and stare at myself trying to see if I looked like a Crohn's patient, not that I knew what one looked like, but if I looked any different.  I didn't, but one time while I was investigating the circles under my eyes I lifted an eyebrow and a new pastime began.  I could lift my left eyebrow without moving any other part of my face, but not the right.  I would sit there for hours sometimes, practicing until I mastered it.  When I left there I was able to wiggle my ears, flare my nostrils, move my baby toes without the others moving and many other meaningless but triumphant skills.

Since I was the youngest on my floor the nurses would come and hang out with me when they had time.  But they were also very busy with the geriatrics on my floor, so I decided to give them a hand.  I would change my own bed linens, get my own extra blankets, just try to lighten their load a bit.  I was in a semi-private room and had many roommates pass through during those months.  Some were very elderly so I became their little "helper".  With many not being able to eat on their own, even though I was starving to death and the smell of the food would sometimes make me want to run screaming from the building like a crazy person, I would help feed them.  If they got new flowers I would put them in vases or water the ones they already had, but not too often did I mess with other peoples plants, because as my Mom and sister could tell you I would kill most of mine.  When a nice plant came for me it usually went home with one of them.  It's funny though, because now I really love gardening.

Roommates can either be a good thing or a bad thing, it all depends on you and the other person.  Sometimes I was so hungry that nothing could put me in a good mood, except for the food I was cruelly being deprived of (LOL) so I wasn't always the merriest one on my floor.  But when I wasn't starving I think I was a pretty pleasant roomy.

For a young persons first stay in the hospital, the geriatric floor isn't the one I would suggest.  Especially if their visit was going to be as long as mine was.  It's not because of the people themselves, they were all so nice and I had some long wonderful talks with some of my roommates, and learned quite a bit.  Some of them told me what the city I lived in was like when they were young.  I had two of them pass away while I was in the room, and that was very hard on me. After the second one that died, I guess the administrators didn't want me to deal with that again because they took the other bed out of the room, and I had it all to myself for the rest of my stay.  Annie was one of those that passed away.  Her breathing was very loud and laboured while she slept.  For the first couple of nights I thought I would have to sleep in the hall or ask for stronger sleep medication.  But eventually the sound would lull me to sleep.  I had gotten so used to it that the night she passed away I awoke because her breathing had stopped.  My Mom knew her time was near because Annie didn't talk, and then all of the sudden she started to talk to her Mom, she wanted to know where she was.  It was very sad when she died but I knew she had gone to a better place.

I had some really incredible roomies like Rita, she was maybe sixty or so, and was there for a hip replacement.  Her friends would come to see her with various samples of make-up, body washes and powder, they were so nice they always brought some for me too.  They joked that we smelled better than anyone in the hospital.  I was in a lot of pain at the time and so was she from her surgery.   When we watched t.v. we would lay on our sides facing each other and would watch the others television.   One night her husband came up to visit and had to rescue us from ourselves.  We were flicking through the channels and ended up on "America's Funniest Home Videos".  When we would find something we wanted to watch we would put both t.v.'s on the same channel and push them closer to the other person, out of our reach.  We watched for about ten minutes when a video of this little one or so year old little boy came on.  He was sitting and spinning himself around on a lazy susan, then when he tried to stand up and take a step, he would fall down.  The look of surprise on his little face was priceless!  For some reason we thought it was so hilarious that we couldn't stop laughing.  It really hurt both of us to laugh, but they showed the video two or three times and between the non-stop body giggles and the pain, we were laughing and crying at the same time with the t.v.'s out of our reach.  Her husband showed up just in the nick of time and turned the sets off for us.  You had to be there, it was pretty funny. :)

I had friends that came by to play fish, hearts or crazy eights.  Some would just take me outside for a breath of fresh air.  I also took calls from the Engineering Firm I worked at letting people how to do my job.  My Nana volunteered downstairs in the hospital selling coffee, baked goods and Nevada tickets with her Church Auxiliary group so it was really nice having her around, and the free Nevada tickets wasn't a bad benefit either.  My cousin was working there as a Respiratory Therapist and family friends also worked there, so someone was always dropping in to see how I was doing.

Financially, being in the hospital here in Canada isn't expensive, everything is free EXCEPT for your television!  Which sucks because without TV you could go insane in a hospital.  However, instead of presents some family and friends would give me money for it, which I thought was AWESOME!  Most people knew not to come see me between 1pm and 2pm because "Days of our Lives" was on.  When I was a kid I would sometimes catch "General Hospital" when I got home from school if my Mom had it on, and I hadn't watched it in years, but during that stay I became a full-blown soap opera freak.

New experiences and environments can be really scary, especially the hospital if you have never been there before with the needles and tests and needles.  But I have always found that if you keep things around you that remind you of home and use your imagination, your stay there may actually teach you a few things about yourself and you might find you have a better time than you thought you could.

A Spoonful of Sugar Helps the Medicine go Down, Not with This Medicine.

Keeping in mind that my diagnosis was way back in 1989, there weren't the same treatments that there are today.  There were only a few options to help heal the damage caused by the disease.  Surgery to remove the damaged areas of bowel was a last ditch effort.  Healing the damage using the medications available at the time was the first choice.

I was put on Salofalk, which is a 5-ASA drug used for combating the inflammation in the bowel.  I took it in pill form, eight a day, and also in liquid suppositories at bedtime.  Usually suppositories are used to clean out the bowel, so you have the urge to go quite badly.  When this feeling occurs you usually can give into it, but with these suppositories, to get the healing effect you can't give in, you have to hold it in.  It was very uncomfortable and an experience I had to go through every night for six months.

Imuran was another medication that I was given daily.  It is an immunosuppressive agent used to suppress the bodies immune system.  Crohn's Disease is a disease of the immune system attacking the digestive tract, so this medication stopped the immune system from attacking my bowel causing more damage.  It was effective but opens you up to catching any bug that is around because you can't fight them off.

Prednisone was the worst medication that I had to take.  It is a corticosteroid and is also helps with the inflammation caused by the disease, it is also an immunosuppressive.  It had the worst side-effects of any medication that I have ever taken so far in my life.  It improves your appetite, causes water retention which makes you appear like you have gained a lot of weight, makes you feel lightheaded, nervous or agitated, sweaty and flushed, you can have skin problems from it and a "moon face".  This is when your face becomes almost completely round.  It makes your face puffy-looking as if you had just come from the dentist from having your wisdom teeth removed.  I also had hallucinations.  Those and the anxiety were the worst.

I was also put on a couple of antibiotics but the worst one was Flagyl.  It is used specifically for abdominal infections.  It caused "Thrush" which is a yeast infection in the mouth.  After the many long months of being in the hospital when I was finally able to go home, my sister and her husband were going to take me to the cottage to be with my family for a couple of weeks,  My mouth and tongue had been hurting and very sensitive for a couple of days but when I woke up that morning it was so much worse.  I went to the bathroom to brush my teeth and looked at my tongue.  It, my gums and the inside of my cheeks were completely black!  I flipped right out and called my Gastro to find out what the heck was going on.  His secretary told me he wanted me to come in as soon as I could, so I dressed and packed in a hurry, called my sister to come and get me early and headed to his office.  When I got there I opened my mouth, stuck out my tongue and asked him "What now?, what is this?".  Of course he smiled at me like he always did, and told me it was thrush, a yeast infection.  He wrote me out a prescription, and as usual I asked him what it tasted like.  He laughed and said he didn't know, and that where this medication usually goes there aren't any taste buds.  That last part went right over my head and I didn't understand what he was talking about until the script was filled and I was in the car on the way to the cottage.  I opened the bag that it was in, read the package and then it hit me.  The script was for vaginal suppositories for vaginal yeast infections and the directions on the box said that I had to suck on them like lozenges.  YUCK!
When we got to the cottage and my family found out that I had to suck on vaginal yeast infection suppositories, they laughed whenever I had to take a dose. 
Now there is a liquid medication for this problem called Nystatin.  Believe me, it tastes much better. :)