Monday, October 25, 2010

"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.

Monday, October 4, 2010

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. :)

Tuesday, September 7, 2010

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.

Monday, August 23, 2010

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.

Saturday, July 31, 2010

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.    

Thursday, July 22, 2010

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.


Saturday, July 10, 2010

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.

Sunday, July 4, 2010

There's Always An Alternative - Medicines

After I was released from the hospital for the blood infection, I was more concerned about my health than ever. My "Monster" was causing so much chaos in my body, yet it was being very sneaky and playing "Hide-and-Seek" with the Doctors. I was determined to find out what was wrong with me, so determined that I would have tried anything, and I almost did.

I was 19 at the time, and all I wanted was to be normal like everyone else.

I had been meditating on my pain for years now, sitting quietly on my bedroom floor, closing my eyes and trying to locate where the pain was. After some practice, I could see my body in my mind's eye and the painful areas would light up, almost glow. I knew that more than one area hurt. After the laparoscope was done a year before, the pelvic pain was completely gone. The endometriosis was the source of it. But I still had to figure out what was causing the pain above my belly-button, in my lower back and abdomen. One down, three to go.

I couldn't wait for my Doctor to believe me. I had to search for the answers on my own. The pain was almost unbearable, yet I wasn't given anything for it because "pain medication won't help pain that is all in your head". I took out books from the library and tried to teach myself Biofeedback techniques to try to desensitise myself to the pain, but I found it almost impossible to do. I decided to look into some unconventional healing methods. I was one hundred percent sure that my digestive tract was the source of most of my problems due to the pain being worse after eating, and having everything that I did eat go right through me. I was desperate and under ninety pounds. If I could have somehow found a way to help my symptoms I would have been so incredibly happy.

I started with buying some Healing Crystals and a book about them. Supposedly if you put the right type of crystal on the proper place, the power of them can heal what ails you. Every night for months, I would lay on my bed with the crystals all over my body, listening to a Relaxation CD of the sounds of the ocean. I also carried them in a pouch around my neck for further protection during the day.

My Mom came into my room to say good night to me one evening, and found me covered with my crystals. I think it was then that she realized that I was really suffering since I was trying to heal myself in private, if I had been faking I wouldn't have been trying to cure myself, or keeping up the pretense while I was alone. Until then she hadn't believed that there was anything wrong with me either. She had been seeing a Chinese Herbalist for some health issues of her own and suggested that I go see him too. I figured it wouldn't hurt and that maybe a new set of eyeballs on the situation could get to the bottom of things. That was a really interesting experience. He did a complete exam and thought that my pancreas was sluggish or that a duct leading to it may be blocked. He wanted to strengthen and unblock the flow of my "chi", which is the life energy of the body. Accupuncture was done three times a week, and he made up herbal tea packages for me to drink. They contained dried barks, mushrooms, leaves and berries. I boiled the herbs in a pot until there was only a half a cup of liquid left, actually saying liquid is being generous, it looked more like sludge and tasted just about how you would imagine sludge would taste, YUCKY! I couldn't believe that I was paying someone to make me drink that foul-flavoured mixture. By the time that I was supposed to show signs of improvement I hadn't felt any better so I moved on.

These treatments help many millions of people around the globe everyday, and I would highly recommend anyone that is not getting the help they want or need from Western Medicines, or want their treatment to have a more holistic approach to consider using these techniques.

The hunt was on again for answers. I never stopped going to my Family Doctor and pleading with him to help me, but a frustrating cycle would occur. The more tests I asked him to requisition for me, the more the results would be returned normal, and the more he would believe I was a hypochondriac, so I continued down the road with Alternatives. First I went to a Naturopathic Doctor and learned how to improve my diet and was introduced to some botanical medicines. They deal more with symptoms and the body as a whole.

I also had appointments with an Iridologist. They look at and analyze only the iris to detect health issues that you could have now, or that could possibly occur in the future. A picture of your iris is taken and turned into a slide. To see your five or so foot tall eye blown up on a wall is quite the experience, let me tell you! Mine looked kind of like a blue cratered surface of the moon! When reading the slides they can tell many things from the flecks, density of the colour and locations of different markings. I had a gold fleck that was called a "Mother's Jewel". The appearance of this fleck is supposed to mean that your Mother is very caring, worried and concerned about you. This shocked me and made me feel defeated all at the same time. It was like going to a psychic but realizing that they are only telling you what you want to hear. I didn't believe that about my Mom at first. Why would she have been worried about me if she thought that I was faking it or a hypochondriac? But then I looked at her as she was sitting beside me, and she was nodding "yes" at me with tears in her eyes. I never doubted her belief in my pain again, and I never loved her that much as I did in that moment.

Thursday, June 24, 2010

My Mica

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Adorable, isn't she?

Thirteen years ago I wanted to adopt a pet. My bunny had passed away about two years before, and I missed having a little one around. My boyfriend at the time suggested a cat but I wasn't sure about it. My family had pets while I was growing up, but never a cat. I remembered my Dad said that cats scratch up your furniture and that they aren't as affectionate as dogs, but I thought why not give a cat a try? I lived on the top floor of an apartment building and I didn't think it was big enough for a dog, so a cat it was! There was a family in Waterloo that had kittens that needed homes, so my boyfriend and I made an appointment and headed over there. I sat down on the carpet watching these little black kittens playing and my heart melted. They were so adorable and the noises they made were so sweet.

One waddled over and sat infront of me and just stared, and then she fell over, lol. She was mine! We put her in the basket that I brought and couldn't wait to get her home! She needed some supplies so we stopped at a pet store. I'm not one of those people that like to dress up their pets. I don't know why, but things like that have never appealed to me. I do however like collars, and Mica has quite a few, I have even made some of themcrocheted and braided some of them for her.

In the early days of our relationship I knew that it was made in heaven. Whenever I would lay down she would lay on my chest and it seemed like she was trying to put her little arms around my neck. She would nuzzle me with her tiny nose. She still does it but now she can get her arms all the way around my neck. She followed me everywhere, taking the garbage down the hall, from room to room and even into the bathroom. Once in there she would try to get up on my lap, but she was too small so I would pick her up and put her there. Having Crohn's I can spend a lot of time in the bathroom. As she got bigger she would just jump up on her own. She is so smart too, whenever I touch the toilet paper she jumps down,lol.

If I sleep too long in the morning she wakes me up for her breakfast, and at 6 o'clock p.m.she will come find me and chirp at me to feed her supper. She gets treats a couple times a day. Sometimes she will let me know if she wants some, or I will just grab them and shake the bag. For some reason she likes to eat them on the end of my bed, and as soon as she hears the bag that's where she goes. She has to sit for her treats and knows it. We have been working on shaking a paw for them for a while now, and she is doing really well.

Wednesday, June 16, 2010

First Hospitalization

Since the Endometriosis diagnosis only seemed to help my pelvic pain, not the back or abdominal pain that I was experiencing, I knew that it wasn't the "Monster", and I would have to keep on searching for answers.

I was getting pretty upset and angry that my doctor, friends and family thought I should be cured since the lapro surgery. My boyfriend at the time called me "a drag" when I didn't feel well enough to go out with friends.

One night I was feeling so well that we went with friends to a patio for a couple of drinks. I found out that beer really made my stomach worse, so I drank Rye most of the time. My doctor wouldn't give me medication for the pain, because he didn't think anything was wrong, so sometimes when the pain would get really bad I would drink just to dull it. That night it was really warm out and I was wearing a tank top. All of the sudden I felt really cold and then my teeth started to chatter. My boyfriend's parents were away for the weekend and I was planning on staying at his house. We were going to have some friends over for dinner the next night, and I wanted to feel well enough to do it, so I asked him if we could go home, because feeling chilled like I was I thought that I might be getting a cold.

When we got to his house, he made me a hot cup of tea and I got into bed. I fell asleep, and when I woke up it was 2:30 in the morning. I had to use the washroom so I got out of bed, but fell onto the carpet. I didn't have enough energy or strength to hold up my own body. His bedroom was in the basement, and he and his sister were listening to music quite loud upstairs. I tried to yell, but it came out like a whisper. I didn't know what was wrong and I didn't know what to do. I looked around and found one of his rugby cleats, and threw it up at the door. I landed only a few feet away from me. Then I grabbed a baseball and tried again. It hit the door and rolled back to me. I kept on doing this until I heard the volume of the music turn down, and threw it again. I heard his footsteps so I knew that he heard it, and when he saw me on the floor I told him I really needed to get to the bathroom.

He helped me get there, asking me what was going on. I told him that I had no idea. He had to help me with my p.j. bottoms, and just as I was going to sit down I told him I was going to throw up. He plopped me down and grabbed the garbage can, just as I started going out of both ends at the same time. When I was done I said that I really needed to go to the hospital. I was terrified, I thought I was going to die. He got me dressed, and off we went.

The Emergency Room was pretty empty at that time of the morning, and they brought me in right away. They took blood, and when the results came back the Dr. came in with two petri dishes. He showed me one with zig-zag lines of white stuff on a reddish-looking gel typed base, and told me that it was a positive result for an infection. Then he showed me the other one that had the white stuff covering the whole dish, top and all. He said that was from my blood and that I was going sceptic. He admitted me and put me on a whole slew of antibiotics to get rid of it. Since I was already in the hospital I asked if they could run some more tests to find out what my "Monster" was. I had 3 barium tests that all came back negative. Not only did everyone already think I was nuts, but all of these negative tests weren't helping my cause. Within a week I was released and sent on my way to continue living in pain.

Sunday, June 13, 2010

What An Inspiration!

I have a friend that really inspires me, and I have never met her face to face.
That is one of the things that I really enjoy about Twitter, being able to meet people from all over the world that you would never have been able to meet in any other way.
I have a lot of Twitter friends that are incredible people, but she is different.

We all have our crosses to bear, those things in our lives that we feel we have to deal with and overcome. Whether it is a dysfunctional family upbringing, a traumatic event, a mental or physical illness etc. These issues can be very hard to get past.

My friend has Cancer, and she is my Champion.
She doesn't feel sorry for herself, or sit around feeling defeated, she has fought it the whole way with surgery and treatments. Even when her body is weakened from her treatments she still thinks of other people and their needs. If you were to read her tweets you wouldn't even know that she is sick. She is a truckers advocate, is passionate about the plight of the soldiers fighting for our freedoms, and has an amazing sense of humour.

I want to be more like her. I write this blog and am writing my book to try to help other people with Crohn's Disease, their friends and family members, and to spread awareness of the disease. But I could, and should be doing so much more. Some Cancers, especially if not caught in time or the ones that are treatment resistant, can be terminal. My disease isn't, there is not any real chance that I could die. So like her I should live everyday to it's fullest! I need to be doing more to make the world a better place to live like she does, find more things to be passionate about like she is, and do more with my life, and take better care of myself.

She has experienced the love of a good pet, a great man, and the love of The Lord. So many people love her, she is an amazing person that has touched so many peoples lives. She is strong and brave and has taken her Cancer by the horns.

I pray everyday that she wins her battle because this world is a better place with her in it. But if God calls her home, she will have left a huge fingerprint. On the world, on her friends and on my heart.

Tuesday, June 8, 2010

Am I cured?

With everyone around me thinking that I was making up my symptoms, or starving myself to death, I started to wonder if I was crazy too. I mean wouldn't you? Every test that I had came back negative, I was eating healthy foods and exercising to try to take care of myself. I wasn't complaining about it all any more, because what was the point, no one believed me anyway. But I must have just been imagining the pain that made me double over or feel like I was going to pass out, and the hours that I would sit and spend in the bathroom with unrelenting diarrhea, having anything that I ate go right through me in seconds.

I was so frustrated! I would pray to be healed and barter with God how I would never do anything wrong ever again if he would just take my pain away, but that night it would make it very hard to fall asleep, and the next morning it would wake me up even before my alarm would go off. Looking back now I am really kind of surprised that I never blamed God for any of it. I was never angry with Him, I never gave up my faith because he wouldn't answer my prayers. I found my faith actually getting stronger the sicker that I was getting. I knew in my heart that there was something terribly wrong, and if I was going to die from whatever mystery illness that I had, I knew that it was all apart of His plan for me.

Many of the women on my Mom's side of the family had endometriosis, with some of them having to have hysterectomies, that came up at one of my doctors appointments. Endometriosis is when the cells from the endometrial lining of the uterus start to grow on the outside of it. I like to use the analogy of a jelly-filled doughnut. The jelly gets out of the middle of the doughnut and spreads all over the other doughnuts in the box, like the crullers or bear-claws. These cells start growing (they don't know why) on the uterus, fallopian tubes, bladder or ovaries. Since there was a pretty good chance that I could have inherited it, my doctor referred me to a Gynecologist.

I had no idea how that could have had anything to do with pain from eating, but I was just happy that it could be the problem and that I could finally be on my way to being diagnosed with something other than being out for attention, and could be treated for it. Everyone had made me feel so bad about myself for so long, that I wanted to find out what was wrong just to prove to them that there was something wrong! Not because I wanted something to be wrong, but to prove that I was right, that I knew my body better than anyone else did, and that listening to my instincts was the right thing to do.

The only real way to diagnose endometriosis is to actually see it, so I had to go to the hospital for a laparoscope. It was quite a simple surgery, day surgery, just in and out, but I was so afraid (and still am!) of needles. I didn't care about the cutting me open part, I started having such a panic attack that I wanted to go running and screaming from the building just thinking about the i.v.. I tried to escape a couple of times right over the head of the gurney but I wasn't fast enough, and I didn't want to let go of my Mom's hand when they wanted to wheel me through the big surgery doors but I had no choice.

Being inside that hallway freaked me out because they just pushed me up against the wall, and left me there to get more and more panicked. As I lay there calculating the opportunity for escape, a clean getaway, an occupied gurney was wheeled out of the operating room. There was a woman sleeping soundlessly on it with a tube coming out of her nose. That's when I almost lost it. I started to cry out of sheer fear, and that was when a nurse came over to go over my chart with me. She showed me her funny watch to try to get me to smile, and it worked. She actually asked me what grade I was in, and happening to have been eighteen and graduated from high school at the time, that made me smile more.

That nurse stayed with me as I transferred myself onto the operating table and let me squeeze her hand as the i.v. was being put in. She really made the whole experience much easier than I thought it was going to be. I felt a sharp pain in my arm, my doctor said "Lights out now Trace", and the next thing I knew I was in Recovery. The surgeon came in to talk to me and said that I did have Endometriosis, it was on my tubes, ovaries, bladder and the outside of my uterus. He said that he cauterized it all (burned it off) and that I should find a big difference in the pain that I was having from now on. He said that he was happy that I now knew what was causing all of my discomfort. I was happy too, but I had a feeling that it was not over.

About three or four days later the surgical pain was gone, but not my "Monster". That was the name I had given Crohn's before I knew what it was. I told my family doctor, my friends and family that not much had changed, that the pelvic pain was gone but not the back or abdominal pains and all of my other symptoms were still there. None of them were very impressed with me, they all decided that I wanted to be sick, and their feelings about me complaining for attention intensified.

So was I cured? Not even close.

Monday, June 7, 2010

It's Complicated

I didn't end up having my colonoscopy on friday. I drank half of my prep like I was supposed to, and had every intention of getting up early the next morning to drink the other half. But sometimes things have a tendancy of not working out the way we want them to.

I could feel the familiar rumbling in my belly, but I also felt a nagging nausea and that made me nervous. After downing that horrible stuff, eight ounces every ten minutes for two hours, the last thing that I wanted was to feel like it was going to come back up.

I'm sure that I'm not the only Crohn's patient that has certain traditions that they keep for the day and night before a colonoscopy. I always set up the bathroom with things to keep me occupied like books, games and my Journal. I was writing an entry when I started to feel horrible abdominal pain and a migraine coming on. It kept getting worse, and worse so at first when I threw up I was happy because the pressure in my head subsided. But then I realized what was going on and I was not a happy camper at all.

I have had over ten surgeries so I have a lot of scar tissue, adhesions as they are called. Every time that I get cut open my scar keloids, this is when it becomes wider and thicker than normal. Inside my abdomen the scar tissue attaches itself all over the bowel, other organs and to the peritoneum, the lining of the abdominal cavity. These adhesions have caused bowel obstructions before and I knew that was what was happening again. The scar tissue is sticky so it makes the bowel stick to itself, or it wraps around the bowel cutting off the passageway, and potentially the circulation. This is one of the complications of having surgery. I have had to have emergency surgery for this before because the circulation was cut off. If the blood can't flow through the bowel, it will die and eventually cause gangrine, which causes blood poisoning that could lead to death.

I knew that it was only a partial obstruction due to the fact that things were moving out of both ends. If I was only vomiting I would have been way more concerned. If this ever happens to you, DO NOT think that it will just get better on it's own or that you can take care of it on your own, go straight to the hospital. Most likely you will need a naso-gastral tube inserted into your nose to suck out the fluid which eases the pressure off of the obstructed area. It is highly uncomfortable but helps to eleviate some of the pain. Most of the time with bowel rest, no food or water, the obstruction will loosen on it's own, only when it doesn't will they operate and go in to cauterize, or burn off the adhesions. This is one reason that surgery is always the last option, because every time they operate, adhesions can form, so having the adhesions cauterized can just cause more adhesions. It's a very vicious cycle.

I have been through this many times and know what to do to help the obstruction resolve itself, so I didn't need to stay in the hospital, also it was a partial obstruction so I didn't need a tube. If it had progressed, I would have been right back up to the hospital begging them to admit me.

It is now Tuesday and I am feeling much better, also my colonoscopy has been re-sheduled to take place in August. If you have any questions about complications of any kind I will be happy to answer them. And I hope you never have any yourself.

Wednesday, June 2, 2010

"The Dreaded Prep for the Scope"

As Crohn's patients, we go through a lot. Good, bad and indifferent.

Spending days, weeks and even months at a time in the hospital teaches us patience, that's a good thing. Being thankful for good days, and making the most of them, empathizing with others that suffer, and learning to listen to our own bodies are also all very good.

But the Colonoscopy, that falls under the bad category.

It's not the test itself, that's a breeze. The humiliation of having a tube inserted into your butt in front of a doctor and nurses, is greatly reduced by the medications that are given by i.v., weakening our defences and cares. Most of the time, thankfully, we don't remember much of it at all. The pain experienced during the test, thanks again to the medications, becomes part of a very distant memory.

The inhabition that the medication can create has been comical to some present in the past for me. When I was diagnosed, I was very blessed to have an extremely good looking Gastro. that I had a secret crush on. My Mom and friends knew about how I felt, but I certainly didn't want him to find out.

Under the influence of these medications during a Colonoscopy, I guess I changed my mind and told him that I was in love with him! When I woke up in Recovery the nurses told me about it and I was mortified! Then he came into the room and neither of us would look eachother in the eye. It was so embarassing! He was my doctor for close to 20 years, and I said stuff like that everytime. He was such a good sport about it and never mentioned any of it to me, but the nurses rubbed it in any chance they got! LOL!

Now for the worst part, the prep. Drinking litres of a salty based, slightly thick, clear liquid, that DOES NOT taste better cold, like they tell us it does, within a small, set period of time (... oh, it is just the worst tasting stuff created by man!) is such a horrible experience for me, that I actually have small panic attacks in the days leading up to having to drink it.

In the past when I have been in the hospital having tube feedings, they would put the prep down the tube, by-passing my mouth. That was great! I wish they could do that everytime. The stuff has such a negative effect on my gag reflex, that sometimes vomiting is inevitable, and then unfortunately I have to start all over again.

How are you with "The Dreaded Prep for the Scope"? If you have any tricks or advice on how to make this a more palatable experience, leave a message, you could help me or someone else that is reading this post. Have you had an embarassing moment too? I'd love to hear about it!

Saturday, May 29, 2010

Crohn's Disease

As you can tell from my first 2 posts, this blog centers around my life with Crohn's Disease.

It has been a long, strange trip so far, and want to share it with you. I am writing a book about my life, and experiences over the last 20 years or so, but I am also using this medium to try to raise awareness about this disease.

When I was diagnosed I didn't have the internet, and only had my doctor and brochures to read to learn anything about it. I didn't even know anyone else with it. But now all you have to do is "Google" Crohn's Disease, and a wealth of information is at your fingertips. Not only that, but you can find and join support groups on line that can be so helpful.

This is my way to give back, and to hopefully help someone else like me, who has maybe found themselves feeling alone, and misunderstood. Or maybe someone that has a friend or family member with Crohn's, and you want to learn more about what they feel or are going through.

It has not always been easy, but as I have stated above, there have always been learning experiences.

So be my new friend, and I promise you will learn something new!

Thursday, May 20, 2010

Happy World IBD Week Everyone!

For those of you that don't know, IBD stands for Inflammatory Bowel Disease or Disorder. These include Crohn's, Colitis, Diverticulitis, Irritable Bowel Disorder and others. They are all diseases that deal with the digestive tract causing a range of symptoms, from mild to severe. The main symptoms in common are nausea, vomiting, inflammation and abdominal pain.

I think it's great that these diseases have finally come out of the bathroom and into the light. Twenty years ago when I was diagnosed with Crohn's Disease, I had never even heard the word before. Many people back then and for years before, suffered in silence, embarrassed to speak to their doctors, or anyone for that matter, about their washroom habits. It was only when the disease progressed to require hospitalization or surgery that it was spoken of, and a diagnosis made.

We've come a long way baby!

Today there are tests such as colonoscopies, blood tests, barium tests, X-rays, MRI's and CAT scans that are done when symptoms arise. There are new treatments that work better, with less negative side effects.

There are also associations like the Crohn's and Colitis Foundations of Canada (CCFC), America (CCFA) and other countries around the world that help patients everyday. These foundations and their members put on campaigns such as "The Heel-And-Wheel-Athon" and "The Annual M&M Meats BBQ", to help raise awareness and funds for research to find cures.

Patients can also get involved with the support groups foundations offer, to find and connect with others that cope with the same things, and have the same challenges in common. Groups are so important and positive, in that patients can get together, and know that they are not alone.

Having a "World IBD Week" denotes the strides in awareness that have been made, and the internet has proven to be a major push in the right direction for this movement. Information about all of these diseases are at anyone's fingertips, with the click of a mouse. Social media sites such as Twitter, Facebook, MySpace and others all have groups specifically for patients, their families and friends.

So if you are curious about these diseases, google them. If you think you may have one of them, see your Doctor. And if you know someone that has an IBD, give them a hug! I know they will appreciate it!

Saturday, May 15, 2010

Gut Instincts (cont)

Back to "Gut Instincts":

After getting nowhere with that doctor, my family decided to switch to a new family doctor, and I was ready for a real diagnosis. No jokes, just facts. I just wanted to be, and feel normal again.

I was losing weight rapidly, was nauseous all the time, had diarrhea multiple times a day, and the pain was getting worse. I was told to quit my dancing lessons and gymnastics by my old doctor. I wasn't happy about it, but I just didn't have the energy anymore. I was also having such bad joint pain that I was finding it all very difficult anyway.

I left my first appointment with the new doctor, had some blood drawn and x-rays and was hoping that he would be the answer to my prayers. But he didn't help either, he thought that I was a hypochondriac, or that my symptoms were just psychosomatic. And because he was an M.D. and didn't think anything was wrong with me, my friends and family decided that he was probably right. That didn't sit very well with me, they treated me like I was crazy and just making it all up.

High School was ending, and I was working two jobs. I was getting worse and kept going back to see the new doctor over and over again, but nothing changed. At one visit my doctor was away so I saw one of his partners instead. I thought maybe he would have some new ideas. Oh, he had ideas alright, he told me all I really needed was a good shrink! and he gave me a script for some antacid. Really helpful, not.

When my doctor got back, I went to see him again, and told him that I really believed that there was something inside of me that wasn't supposed to be there. I told him that I wanted to go and get an Anatomy book, cut myself open, and remove the object of my pain. He looked at me like I was nuts and just sent me for more blood tests which came back negative for everything.

Because of my weight loss, anorexia was brought up. I knew that wasn't the problem. I swore up and down that I wanted to eat, was hungry, but it just hurt too much every time I ingested anything.

I started smoking pot to help with the pain, especially at bedtime because the pain would wake me up so many times during the night, that on top of being drained, and feeling weak from not eating, I was exhausted from being up and down all night.

I graduated from high school, got a new job with an Engineering firm and quit the other two. The company was owned by a friend's Dad and I loved it there. I should have been healthy, happy and enjoying my new life.

But with friends, my boyfriend, my family and my doctor thinking that I was faking my pain, I started to doubt myself at times and wondered if I was just imagining it all, or maybe not taking care of myself properly. That was really hard, thinking that I was doing something to cause this all to happen to me. I decided to make some changes to see if they would help.

I started running again, that had always been one of my favorite ways to get exercise. I started to make healthy lunches (and making myself eat them) to bring to work with me instead of going to the fast food places with co-workers. After a couple of months of implementing these changes I was feeling worse. The pain was increasing and I was literally spending hours a day in the bathroom with diarrhea.

This was a really hard and lonely time for me. No one wanted to hear about my pain and other symptoms anymore. Some friends stopped being there for me. I would sit cross-legged on my bedroom floor and meditate on the pain and it's location. The worst pain was in my lower back, just above my belly button and in my lower pelvis. I had been doing this for months and I really could feel like there was a foreign object inside me that needed to be removed. I knew that I wasn't crazy or imagining it. I knew that there was something really wrong and I wasn't going to stop bugging my doctor until we had answers. I was going to listen to my "Gut Instincts"!

I decided that I just wouldn't talk about it anymore, and no matter how I was feeling I would pretend that I felt great. It was very stressful, and I would cry myself to sleep some nights praying for God to either heal me or let me die so that I wouldn't have to suffer anymore.

Friday, May 14, 2010

Gut Instincts

Have you ever felt or knew that something was wrong with you, but you just couldn't put your finger on what it was?
That started to happen to me when I was grade 10. I was a relatively healthy person until then, I was active in gymnastics, dancing lessons, school sports and theatre. But one morning I got up early for a gymnastics practice at school and skipped breakfast.
I was starving during my second period class so I ate an orange, and by third period I was in the nurse's room with the worst abdominal pain I had ever had. She told me it was because I ate the orange on an empty stomach, but who doesn't eat fruit for breakfast? It didn't make sense to me.
The pain never went away from that day on, and I was a frequent visitor at my family doctors office.
He thought the pain was ovulation. Everyday? I didn't think so.
I was also experiencing joint pain that I had never had before, especially in my knees. Once when I went back and complained about it, he told me it was from tap dancing.
I said "I have been tap dancing for years and never had this problem before", he said "Tap dancing can be very, very dangerous you know, you could fall into the sink!". Funny, but not the help I was looking for.

I just kept getting sicker and sicker, and every fiber of my being told me that there was something serious going on, but help wasn't going to come from him.