"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. :)

He Saved My Life!

The first night in the hospital was really lonely.  I was in a semi-private room, but by myself.  The nurses were really great and knew that I was nervous about being there without knowing exactly what was going on with my body, so they would stop in and chat with me when they had the time.  I was on the Geriatric Ward, the only one with an available room at the time, and I was the youngest patient on my floor.

When my Gastro came by that day he explained what was going to happen during my Colonoscopy, and I was relieved when drugs were mentioned.  The pain I was already in was bad enough, let alone having a scope scratching along on the inside of my intestines.  The lucky part for me though, was that since I already had the feeding tube in my nose they would be able to put the prep through the tube.  At the time I didn't realize how really lucky I was until the first time I had to drink one myself, Yuck!  I felt really bad for my family and friends that came up to visit me that night because I spent most of my time in the bathroom, while they sat around in my room waiting for me.  I would just get back into bed, and have to get back up and go back to the bathroom.  I had a little table in there with me so that I could do crosswords or read if I wanted to, it passed the time.

The next morning I met my hero in the Colonoscopy Suite.  I was so nervous.  A small part of me thought and feared that nothing would be found, that I really had nothing wrong with me and that I would be sent across the street to the Mental Health Hospital.  These were worries from not being believed for so long, and being told I was just making it all up still affecting me.

When I find out that I would be awake for the test, I tried to get off of the gurney, but I was attached to it by my i.v. bag.  It was explained to me that the medication they would be giving me would act as an amnesiac and that I would be aware of what was going on, but I wouldn't remember any of it.  I was completely alright with never remembering an embarrassing experience like that, so I relaxed and let him give me the meds.  I actually thought that I was sleeping, until I felt the pain.  I told him that it really hurt, but fell back to sleep so he must have given me more.  It is necessary to be awake during this test as you need to roll around on the table when asked, this makes the scope easier to move around the corners of the colon.

I woke up in Recovery, and was brought back to my room to sleep.  When I woke up it was after noon, and my Hero came into my room with my results.  He said that I definitely had Crohn's Disease, he didn't need to wait for the biopsies to come back.  It was really quite a bad case, and that I would need a lot of bowel rest, medications and time in the hospital.  Surgery was an option, but there was so much damage that trying to heal the bowel first was the best idea.  The damage started at the Cecum, which is a large pouch where the small intestine feeds into the colon, and spread in both directions into the small and large bowels.  Recovery would be a slow process, but things could only improve.  If I had not seen him or had the test and treatment when I did, perforations of the bowel and blood poisoning could have killed me.  I believe he really did save my life.

My treatments started that day.

If He Wasn't So Cute...

When my Mom and I got to the Guelph General Hospital I couldn't believe how fast things started to move.  I had been hoping and praying that something would finally happen and now that it was, it was going a wee bit fast for me.

Nurses were coming at me from all directions, asking questions, taking my vitals and then came the i.v..  I was so afraid of needles that in public school I had to be held down on the floor in the nurse's room just to be given a shot.  That was years before but the fear never went away.  I felt so stupid having to hold my mom's hand through it, but that was the only way they were going to get that needle in me.  It didn't help that I was so dehydrated, so it took more than one try to get a keeper.  To this day, after 24 years of dealing with this "Monster" I still freak out when the letters I and V are used too close together.

My Gastro had ordered all of these things to be done to me before he could come up and check me out for himself.  I had x-rays, an ultrasound and thought I saw every inch of the hospital that first day.  When he arrived he looked kind of sad.  He said I was really sick and that I was going to have to stay for a while for more tests.  I looked at my overnight bag and knew I hadn't packed enough.  He still wasn't sure what it was that was wrong, but was leaning really strongly towards "Crohn's".  The colonoscopy that was moved up from two weeks away would diagnosis whatever it was.

I started to try and tell him that I really didn't need to be there, that I could just take some time off work and rest, and that I would eat my veggies, and even wheaties if that would help, if I could just go home.  I still remember his face when I was rambling on like a terrified little kindergardener.  He just smiled at me.  It was a beautiful smile, but it pissed me off.  He said I had to be fed through a tube in my nose because I was malnourished, and I was in the best place I could be.  How could being fed through a tube or being in the hospital be the best place for me?  I even tried to tell him that I thought I was pretty sure I was all better, but he wouldn't have any of it, just smiled that white smile, said he would be right back and left the room.

The funny thing about the whole freaking out session that I had, was that I do remember calming down enough for a minute to comment to my mom on how good-looking he was.  But hey! I was still a girl. When he did come back he had gloves on, was followed by two nurses carrying a whole bunch of freaky-looking packages, and started unwrapping them.  I saw a tube of lubricant and was wondering what that was for, when he started to rub some of it on this pink tubing.  A nurse was trying to put a straw in my mouth from a glass of water which distracted me long enough for him to get the tube near my nose.  I looked him straight in the eyes and asked if it was going to hurt.  Of course he said no, it just might be a bit uncomfortable for a minute.  I drank the water as he pushed it into my nose and down my throat into my stomach.  The look on my mom's face told me I was lucky I wasn't watching.  I gagged a few times, but he just kept on smiling.  Finally it was taped in place, I was hooked up to my pump and my first meal was being served.

He said I had been through enough for one day, and told me that I could relax now and that he would come back to see me the next day.  One of the nurse's gave me a shot for pain, which I had to hold my mom's hand for again,  and as she left the room I remember saying to them "If he wasn't so cute I wouldn't have stayed".

But that first night, alone in my room, it dawned on me that this man had probably just saved my life.

Hospital Bound

It was near the end of June in 1989, I was at work feeling better than I had in years.  Just knowing that I was going to have a colonoscopy in two weeks,  was going to find out what had been going on in my "gut" and that my new Gastro. believed me, had an incredible effect on my spirit and body.
I had been out running errands when I got a call from the office.  They told me that my Gastro had called and that I was to return the call when I got back.

There were two more destinations that I had to get to before I could get back and call.  I was so curious about why he had called, I ended up distracted and missed roads I was to go down, and buildings I was supposed to stop at.   Because of the fact that everyone thought my problems were psychosomatic, my mind started to play tricks on me, and I imagined calling his office only to find that he talked to my family doctor, who told him that I was crazy, so he had decided after thinking about it he wasn't going to take on my case.  By the time I returned to work I was so worked up and believed that was going to happen, that I was afraid to call him back.  Thinking that I was going to be in pain for the rest of my life, and that no one would ever believe me, I sat in the bathroom for a half an hour and cried

My immediate boss Leanne found me in there and told me to just call, that it could be important.  So I went into my office, shut and locked the door, sat down at my desk and shakily dialed his office's number.  When I told the receptionist who was calling, she got him right on the line.  He told me that he got my blood test results back that morning, that they were really messed up and that he couldn't believe that I was actually at work, walking around and functioning properly.  He told me to get home, pack a bag and head up to the hospital to be admitted.  I was in shock.

I cleaned up the mascara and tears that had stained my face, and went into the big bosses office, to tell him what was going on, that I had to leave, and that I didn't know when I would be back.  I found my friend Richard at his drafting table and asked him if he could give me a ride home.  When I got there my Dad was just coming home, and I told my parents what was going on, and asked if one of them could take me to the hospital.  I stood there as they argued amongst themselves about who had more important things to do, and which one was going to be able to take me.  Again, still, I wasn't important.  I went to my room and packed.

It was somehow decided that my Mom would take me, so he got in the car and headed to the hospital where I hoped my journey to a diagnosis and back to health would truly begin.    

I Found My Hero!

I had been taking the "Digest" pills that the Iridologist had given me for about a month, and I was getting worse not better.  After consulting my Mom and my other practitioners they all told me the same thing.  They said that I could possibly be having a "Healing Crisis".  That is when during the healing process, your symptoms get worse, when the body is getting rid of all of the toxins that have been stored up.  When this process is over you generally will improve.

But my "Gut Instincts" were working over time again, I had a feeling that there wouldn't be any improvement or healing from this.  I thought that the ingredients in the pills were just feeding my "Monster" and that he was getting stronger.  I missed more work in that one month than I had in the four years I had been working at that job.  I gave it more time like they suggested, but felt it wouldn't matter how much time I waited, I felt so sick, and I only weighed eighty-five pounds, I thought I was going to die.

My Dr. and Mom were concerned as well, and he finally called to make me an appointment with a Gastroenterologist.  I couldn't wait to go.  The two weeks dragged by, but the day finally came.  My Mom brought me to the appointment.  The minute I saw him I knew he would be able to help me, being incredibly good looking didn't hurt either!

He asked me a lot of questions about my symptoms, my pain, medications I was taking, and my diet.  He threw out the antacid pills that my family doctor's partner gave me and said they were useless.  I was then examined.  He felt the glands on my neck, and when he pushed on the lower left side of my abdomen I almost jumped off the table it hurt so much.  We all went into his office to talk.  He said he thought that I could have Crohn's Disease or Colon Cancer.  I said  "I'll take that crone thing" meaning that I really didn't want to have Cancer.  What he said to me next frightened me.  He said that many of his Crohn's patients commonly wish that it was terminal because they really suffer a lot, it's painful and there is no cure.  Before he finished his sentence, I stood up and said  "Wow, I feel so much better all of the sudden, so maybe I'm okay now".   I looked at my Mom and sat right back down, joking around like that is just a defence mechanism for me or else when I'm nervous or afraid I would end up crying.  His secretary scheduled me for a Colonoscopy (he didn't really get into what that was all about) and on the way home we stopped to have all of my blood tests done.

It was two weeks until the Colonoscopy, and I was finally ready for answers and treatment.



 

Are The Eyes Windows? You Bet They Are!

The visits with an Iridologist back when I was 19 years old, before my Crohn's diagnosis and the recommendations given were the beginning of the end of my quest for answers. Going this route was the best thing that could have happened at that time. Every aspect of my life had been infected by this "Monster" and I was at an all time low, but about to hear something that no one else had said to me that would give me the confidence to keep fighting it.

This specialist agreed with my intuition that these mysterious and miserable symptoms were related to my Digestive Tract. Having someone tell me that they believed my "Gut Instincts" meant more than you could possibly imagine. She didn't think that I was a nutso attention seeker or anything else, she knew that there was a "Monster". She was on my side. She did what I wanted my Doctor, family and friends to do. She looked at me, really looked, but more importantly she listened to me and wanted to help.

If you looked at me back then you probably would have thought I was anorexic like some people did, or that I was very ill. I was five feet, five inches tall and weighed under one hundred pounds. I was under eighty pounds when I was diagnosed. I was trying to do all of the right things for better health, I was eating all of the right foods. But eating was very unpleasant experience. Food tasted great but minutes later I would be doubled over in pain, and it passed through me so fast that it wouldn't be in my body long enough to absorb any nutrients. From my visits with the iridologist I would find out that all of the so-called good food I was injesting wasn't doing me any good at all and was just irritating my bowels more than anything else. I was so ready for answers and ready to stop faking how I felt.

I was going to work everyday even though I had no energy and the pain was inscruciating, but I didn't want anyone to think that I was slacking off. I tried to do everything all of my friends were doing, I didn't want to be left behind. I had learned a long time ago when all of my test results kept coming back normal not to complain anymore about how I felt. Everyone around me was as sick of hearing about it as I was of living it, so I kept my mouth shut as much as possible. That didn't stop people from talking about me behind my back, or even to my face about how I was upsetting them. I stayed over night at a friend's house one night, and in the morning while I was getting dressed she took a picture of me. We didn't have digital cameras back then, but when she got the roll back she sat me down, showed me the pictures and told me that I was thin enough, I had made my point, got all of the attention I wanted and should start eating again. I was so hurt. My "Monster" had been around for years, and I couldn't believe people that I cared about, and that were supposed to care about me could be so cruel, deaf to what I had confided in them and blind.

But now I had my Mom and my Iridologist on my team! After analyzing the characteristics of my irises she told me that there were signs of inflammation in my bowel and that there was a good chance that a duct that lead to the gall bladder was blocked. I was shocked that all she had done was look at my eyes and could tell that my Digestive Tract wasn't working properly, and yet my Doctor had run all sorts of tests with no signs of any problems at all. Was he just not running the right tests? She gave me some all-natural pills to aid in digestion, I was to take two of them a half an hour before meals.

This was to be the start of a new healthier pain-free life for me! I was so excited I could barely sleep that night and couldn't wait to start my new regime.