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.  

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.

You Needled Me

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

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

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

 

Tube Free!

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

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

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

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

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

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

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

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.