Category Archives: Medicine

My experience with TPN – Part II

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!

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!

 

What’s the connection between Crohn’s Disease and TPN? – Part I

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!

Crohnie Meds and Useful Info

Good day everyone!  Now that you’ve read my last post on what Crohn’s Disease is about, I would like to inform you of the many medicines that are associated with Crohn’s. I am sure there may be a couple I have missed and your reaction to taking these may be different, however, these are the ones I have taken and experienced:

Antibiotics:

Flagyl (mesalamine) – The only good I have figured this drug to do is when I’m really down with a high fever, it gets rid of it.  However, you can’t take it for too long or your diarrhea will get worse.  Other side effects that I have experienced with this drug is a very yucky metallic taste, everything I eat taste like I’m chewing on aluminum foil! Also, I get a heavy coating on my tongue that I call my “fur tongue”.  Ain’t no amount of brushing that can get rid of that fur!

Cefdinir – Kills certain bacteria in your gut.  I am currently taking this and I call this drug my miracle pill!  Love it!  It seems to get my poop more formed than any other drug I’ve taken.  However, I suggested to a friend of mine to talk to her doctor about her getting on this and she told me she was on it before but she had an allergic reaction to it.  It goes to prove that everyone reacts to drugs differently.

Cipro (Ciproflaxacin) – Didn’t work for me.

Levaquin (Levofloxacin) – Didn’t work well for me either.  It ended up giving me Tendinitis.  Not good.  I’ve taken it twice, got same reaction.

CD Meds:

*Pentasa (mesalamine)

Sulfasalazine (Azulifidine) – Also good for Rheumatoid Arthritis.  Didn’t work well with me for helping my Crohn’s.  No reaction.

Predinisone – Suppresses the immune system and reduces inflammation.  This seems to be the only kind of drug that works for me, however, of course you can’t stay on them for a long period of time.  It gives me a moon face with weight gain, makes my heart beat faster and sleep deprivation.  One good note to this is my house has never been cleaner!  It’s nothing to see me cleaning house at 1:00 am when I’m on this med!

Immuran (Azathioprine) and 6MP  – These drugs suppress the immune system also.  I absolutely cannot tolerate these because they mess with my liver enzymes.  My liver enzymes skyrocket when I take these!  I had to have a liver biopsy because of this med!  However, I do know some people who this med is good for..

Entecort (Budesonide) – My favorite!  This is my drug candy so to speak.  It works that same as Predinisone, however, it doesn’t give out the side effects.  It does give me lots of energy though.  Love, love, love this drug!  I should note that both the Prenisone and Entecort are corticosteroids.

Remicade (Infliximab)  Taken through IV.  Take a look at some information about this drug. Remicade. This drug worked for me for a while but then my body got used to it and it stopped working plus ended me up in the ER with serum sickness.  Not fun!

Humira (adalimumab) – Taken as a pen shot.  Hurts like hell also!  It worked for me for a while, then stopped working.  Take a look at Humira. I asked for the prefilled syringes and it felt much better going in than the pen.

Entyvio (vedolizumab) – Taken through IV also.  This drug really never worked right for me.  No reaction to it.  Entyvio information.

Stelara (Ustekinumab) – Taking now.  My doctor says it’s helping, but I don’t feel it and I am very close to having another surgery.  Stelara information.

Cimzia (certoizumab pegol) – shot form.  No reaction for me.

Methotrexate – Very strong medication.  It is used as a cancer drug also.  Made lots of my hair fall out.  Still taking this, don’t think it is working anymore but doctor says it is..

*A coupon for Pentasa.  Also you can look at their Patient Assistance Program.

 

I hope I gave you a little insight of many of the medications out there for Crohn’s and Colitis.   I also pray that you can find the right one out there for you.  Just remember, everyone has a different reaction to the medications out there.  What may be working for one person, may not work for another.  Unfortunately, it seems as if we are guinea pigs sometimes, just waiting for the next med to try.  Remember to keep a positive attitude, I can’t stress that enough, and we will get through this one day at a time.

I would love to hear some feedback of what works for you and some of your experiences with the medications!

 

Chow for now!