Victoria

Back when I was first diagnosed there weren't many other Crohn's patients in the hospital at the same time as me, but during my last stay there were five of us.  The larger number of patients occur now because more people know what Crohn's is, it's being diagnosed more often these days.

I have met many Crohn's patients over the years in the hospital, and am still friends with most of them but the most memorable patient was a little girl named Victoria.

After I was released I continued to go up to visit her.  Visiting newly diagnosed patients and answering any questions they may have had, from a patients perspective, was something that I found helped both them and myself.  It was something that I wished I could have had to help me during those first confusing and scary years.

Victoria was only a child, under ten when she found herself dealing with it all.

One day when I showed up there and walked into her room, she didn't want to see me.  I was a little hurt but more concerned as to why.  Finally her Mother left us alone and she said  "You don't have Crohn's!  You can't have Crohn's and be that tall!".  For any of you that know me, I am NOT tall, 5 feet 4 and a half inches isn't tall.  But to her I was.  Between little sobs she went on to tell me that her doctor had talked to her parents that afternoon, he told them that due to her diagnosis at such a young age, she wouldn't grow, her height would be stunted.  Steam almost started coming out of my ears and nostrils I was so mad, but I calmed down and assured her that I did have Crohn's and that she would be at least as tall as me.  That made her smile though I wasn't sure which made her happy, that she could look forward to never being a runway model or that we were still Crohn's buddies.  We coloured and watched some tv until it was time for me to go.

On my way out I asked whether her doctor was around because I wanted to give him a piece of my mind, and lucky for me he was.  Because he didn't know me I asked if I could speak to him for a minute and introduced myself.  He smiled and said Victoria and I were very lucky to have each other, I agreed.  But the smile disappeared from his face when I told him that if he has something to discuss about the disease with Victoria's parents, to leave the room with them or bring her into the discussion, because she is too young to understand some things and old enough to jump to her own conclusions if not explained properly.  I went over the conversation that her and I had and told him that I'm not the one that should be telling her such things, that it's his job that his patients understand their illnesses.

Victoria was in the hospital for another month or so after that and I saw more of her when I was then admitted again.  Her doctor never talked in front of her to her parents again.

I assume you can figure out what the moral of this story is, but whether you are a patient, a parent or a doctor in a situation like that, think about the ears that are around you.  You can never tell what others are thinking and they may just be too afraid to ask you to explain yourself better.  So put yourself in others positions, you never know, you might even learn something.  

Pre-Surgery and Re-doing tests

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Feeding Time 2

In my last post I wrote about the tube-feeding that I have had.  There is another way that I was given nutrition when I needed it but also needed bowel rest.  It's called Total Parenteral Nutrition or TPN for short.

Unlike the tube feeding, this type completely by-passes the gastrointestinal tract and is given by I.V..  It can be used for short term or long term.

The i.v. site needs to be changed regularly and my veins are so small that I had a central line put in that could stay in as long as I needed it.  This is what the picture above shows.  The i.v. is put into the vena cava and the nutrients are absorbed through the blood.

My doctor gave me some meds to make me drowsy when he inserted it, and then to make sure it was placed properly they took an x-ray.

People can have these in as out-patients, however a home nurse has to come often to check for complications.  I have been in hospital and out with this type of feeding.

Complications can be fatal, but these occurrences are rare.  Some complications are infections of the i.v. catheter, blood clots and gall bladder problems.

Personally I prefer this type of feeding.  It is painless and there is no tube shoved in my nose.

My next post will be about preparing for my first bowel surgery.  

Feeding Time!

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

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

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

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

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

A Little Boy and his Third Appointment.

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

The Joys of Thrush

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

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

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

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

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

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

You Needled Me

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

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

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