May 2016

Hello everyone – welcome to part II of my TPN post!  In this post, I will tell you my experience with the surgery, starting the TPN and my home health experience so far.  Boy, is it a doozie!

So, the reason why I needed the TPN in the first place was because my weight had dropped down to a dangerous number.  Before my ostomy surgery, I was 120 lbs.  After the surgery, I was 110 lbs for 2 years then my weight started dropping more without changing my diet.  I was at 105 lbs for about 6 months before my G.I. doctor told me I needed to get on the TPN.  My heart rate was faster and my blood pressure was very low.  I was so dehydrated, I had to make a trip to the E.R at least twice a month to receive IV hydration fluids. Basically, my small intestine just stopped absorbing much of anything for some reason.  Looking back at all the symptoms, I am surprised I didn’t get the TPN sooner than I did..

When I went to the doctor who heads up the TPN department, she told me:

1. I would have a catheter placed in my chest
2. I would have to spend one week in the hospital after in was inserted
3. I would have to take the TPN bags and supplies to New York City with me because I couldn’t skip a day.  BUMMER!

When I got in the hospital on a Monday, it felt weird because I didn’t feel sick.  Tuesday morning when I got up, I couldn’t eat or drink anything because of the upcoming surgery.  They came in and talked to my husband and me and told me what they were going to do and what kind of catheter they were placing in me.  The Radiology Department actually done the “surgery” and they had an ultrasound machine right at my face so that they could see where to place the catheter.  I was awake but loopy during the whole thing.  When I came to, I had a big bandage on me.  I slept good the rest of the day!

When I got up Wednesday, I had a huge headache all day!  Waay past a migraine!  Even the pain medicine wasn’t doing any good.  I had a very inadequate nurse that made it worse.  I was throwing up and had a cold pack on my head to try to help it.  All I could think of was that I was going to stroke out.  A stroke is one of the side effects that could happen to you due to the position the catheter is in.  I was not a happy camper and when the doctor came in the next day, I made sure she knew how I felt!

On a different note...it never fails, I always, and I mean ALWAYS get a roommate that has her TV blaring until the wee hours of the night.  ALWAYS!  Or they don’t turn it off at all!  I have been known to go over the other side myself, IV pole and everything, and turn the TV off because they are fast asleep.  The last one I had, I turned it off and 30 mins later, she woke up and turned it back on!  This was 2:30 in the morning!  I make sure and get them back during the day when they are trying to nap!  This is why I hate hospitals so much!

Anyway, for the rest of the week, I had a nagging headache and felt nauseated.  I learned later the reason for this.  My body was so malnourished and it was not used to receiving all these nutrients and absorbing them that it had to have some time to get used to them all.  After about two weeks, my headaches were gone and I was no longer nauseous.

When I finally got home, I had a home health nurse to teach me how to prepare my TPN bags and start my IV.  Also she changed my dressing and drew my blood twice a week.  Let me tell you about my home health nurse’s trainee.  This incident happened the first week I was home.  This trainee changed my dressing one day and it kinda hurt a bit.  She was actually scrubbing the catheter with the alcohol wand they have!  It hurt.  Then it got quite, she was trying to work as fast as she could to get out of my house.  When they left, I looked in the mirror and she had popped a stitch!  I had to go back to the hospital and have the doctor stitch my catheter back up.  These stitches are held together internally and they are metal stitches.  It didn’t feel very good.  This was only my first week back home!

I had to wear this TPN bag for 12 hours a day, 7 days a week.  One bag was called a Lipid bag and it had 1900 calories in it.  I took that twice a week.  The other bag was a clear yellow and it had 1400 calories in it.  I took that 5 days a week.  I have also been eating a regular diet on top of the nutrient bag!  I have now gained 30 pounds since last May and they stopped the Lipid bag completely.  Also, I am taking the clear yellow bag every other day and they lowered the calories on that bag to 1000 calories per bag.

Me now!

Maybe sometime soon, they will take this out of me.  I really wouldn’t mind keeping something in so that I could hook myself up to hydration bags when I felt a bit dehydrated instead of going to the ER every time.  However it plays out, I am thankful for the TPN that I have received.  The way I was before, I may not be alive now.  Remember to take this disease one day at a time, I am living proof that things do get better over time.

Chow for now!

Hello everyone, I hope ya’ll are doing well!  First, I would like to share something that I had seen since my last post.  In that post, I was talking about handling stress and how it affects my Crohn’s Disease.  Right after that post, an article came across my FB page saying how stress may worsen Crohn’s Disease.  Click here to read the article.  Secondly, my dear daughter with her sic sense of humor, decided to give me an early birthday present – a poop emoji pillow!  She knows me well – I love it!

Okay, back to the subject at hand..Another big part of my life is Total Parenteral Nutrition or TPN.  TPN is a way to receive a special form of food through a vein.  It also contains liquid nutrients such as carbohydrates (calories), proteins, fats, vitamins, minerals and electrolytes. TPN can be administered in 10 hour or 12 hour increments.  I have to administer my TPN for 12 hours a night.  The needle can be placed into the stomach, small bowel or by catheter in the chest area.  It may be necessary to keep the catheter in the person’s body for weeks, months or even for life.  Most people keep theirs in for about a year.  I’ve had mine in the chest area since the beginning of May now.

The type of people who may need TPN are people who can’t absorb the proper nutrition or people who cannot tolerate solid food well.

Some examples of these types are:

• People that have cancer of the digestive tract.  Chemotherapy may cause your bowels to absorb the nutrients inadequately.
• People with Crohn’s Disease.  This disease may cause inadequate absorption or affect your ability to eat and digest food properly.
• People with Short Bowel Syndrome.  There isn’t enough bowel to get that proper absorption.  You get the short bowel syndrome diagnoses through surgery or if it was present at birth.
• Ischemic Bowel Disease.  This is when there is decreased blood flow to the bowel.
• Abnormal bowel function.  This happens when food cannot move properly through the bowel.  Cancer treatments and surgical adhesions can cause this.
• Uncontrolled Vomiting and Nausea.

(www.mayoclinic.org)

There are 7 types of TPN catheters.  These are:

• Single, Double and Triple Lumen catheters (I have a Double Lumen catheter)
• Hickman
• Broviac
• PICC line
• Port

Any one of these catheters can administer the nutrition through the vein.

I’m actually going to call this educational portion of the post Part I.  I will continue telling you about my story on Part II of this TPN journey.  Reason being, I don’t want to bore you too much on the educational part because I would probably lose you when I write my “book” about what actually happened to me and boy is it a dandy!  Just remember what I told you earlier, nothing goes by the book with me.  If there is a chance of it happening, it will happen to me!  Remember to keep your head held high and take this disease one day at a time.  We will get through this together!

Chow for now!