Monthly Archives: October 2016

My experience with TPN – Part II

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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

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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!

Week of 10/10/16 – 10/14/2016

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Another crazy week last week!  Sorry I am a bit late with this information, but I wanted to tell you what all happened.

10/6/2016 – Today I woke up in a lot of pain from my stomach area. It wasn’t a blockage pain, but like an all-over type of Crohn’s pain. I knew when I got up that it wasn’t going to be a good day and will become a bread and water type of day. In the morning, I didn’t eat any breakfast but I did drink some red grape juice. I sipped on a couple of glasses of the juice and by 1:30ish I decided I should try and eat a little something. I went downstairs to the pantry and as I was getting my Chicken Noodle soup, I had that I’ve got to puke feeling. I had to run all the way back upstairs and I barely made it to the bathroom before I vomited. I had been under a lot of stress this past week and Thursday was the day when it all caught up to me. I played it safe for the rest of the day and just nibbled on soft foods.

10/12/2016 – Today I had my first appointment with my new G.I. doctor.  I really enjoyed talking with her.  She actually listened to me instead of talking 20 mph over my head and telling me what I was going to do.  I told her what happened this past summer with my old doctor, the steroids and my hospital stay from my flare up.  She told me that my type of Crohn’s Disease may be the kind that responds more to steroids and not much of anything else.  She didn’t see a reason why I shouldn’t stay on the Entecort if it would keep me out of surgery for another 1 -5 years.  I think I actually told her that I loved her!  That means if everything goes okay, I will not be having the surgery my other doctor told me that I needed, at least not in the near future.  Whoo-hoo!

10/13-14/2016 – I’m not sure why, but the fatigue has really gotten to me these days.  I don’t feel bad but I absolutely have no energy.  The things that I had no problem doing a few days ago, I cannot muster the energy to do them now.  My fingernails are also very brittle and are constantly breaking off.  I have a feeling something is going to go down, I just don’t know when or what yet..

I do have a couple of questions for those of you reading this post.  How do you cope with stress?  What are some things that you do to de-stress yourself?  I am curious as to how others deal with this. Sometimes stress gets the best of me even though I try my best not to let it. I know I say just take one day at a time, but sometimes even I have to be reminded to do as I say!

 

Chow for now!

Tests for Crohn’s Disease/Colitis

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Hello everyone!  I hope it’s all going well your way.  First, I would like to thank you all for the mail I have received encouraging me to keep going.  It makes me happy to know that my posts may help someone or at least put a smile on their face!  Today I am going to inform you of all the different tests, other than a colonoscopy, there are out there for detecting Crohn’s Disease, from the initial tests to the more involved tests.

For initial testing, you would get some blood work performed.  For instance, the doctor may order tests for anemia and/or infection such as a CBC with differential.  Also, a Fecal Occult blood test may be ordered to check for blood in your feces.

If the doctor sees something suspicious, he or she may order other tests such as the following:

  1. X-ray (2 kinds) – with barium by mouth is called an Upper G.I.  With barium by rectum is called a Barium Enema.  Barium is a contrast that helps the doctor see anything that may be out of the ordinary within a person’s body.
  2. CT Scan (Computerized Tomography) – similar to an X-ray, can actually take place of an X-ray. This test examines a cross-sectional of a specific part of the body so that doctors can see different views of the area in question.
  3. MRI (Magnetic Resonance Imaging) –This instrument is gives off a strong magnetic field and radioactive waves that produces detailed images of what is being scanned.  It can find even the smallest defect or abnormality in the body.  Caution:  You need to ensure that all metal is removed from the body before imaging because the strong magnetic field will actually pull the metal from the body, even from the inside out.  STORY TIME!  To prepare for the test, you have to drink 3 big glasses of barium, then get an IV in you for the contrast they inject in you during the test.  The test can last for 45 minutes minimum.  Before I had a colostomy bag, I had severe diarrhea all the time.  Well, drinking 3 big glasses of barium before a test and laying on a slab inside an instrument hooked up to an IV for at least 45 minutes is not a good thing for someone like me.  I never had an accident, however, there were many a times when I don’t see how I got out of there without pooping everywhere!  That was the most stressful test I could have taken, I was just in a little hospital gown to top it off!  ANOTHER STORY!  I thought that after I had my colostomy bag, any MRI I took should at least be easier…NOT!  So, I filled up with the barium and laid down on the slab.  They placed this huge, heavy jacket-like thing on top of me and hooked up my IV and stuck me in the instrument.  Since I have a bag now, this heavy thing was laying on top of me in this instrument and flattening it out.  There is no holding anything in when you have a bag so when it needs to go, it goes!  Instead of going down and collecting, the poop went out the sides because of this heavy thing on top of it.  So, even though I managed to dodge the bullet without the bag, I couldn’t with it.  When they took me off the slab, I had a mess going on.  How embarrassing – the technicians just kinda sit there and stared at me, I guess because they had never encountered this situation before?  What a day.
  4. Upper Endoscopy – This test involves a scope going down a person’s esophagus, into the stomach and into the small intestine.  The scope used for the colonoscopy can only get into the very last part of a person’s small intestine so if there is any activity in the upper intestine, the doctor performing the test can’t see it.  The scope used for the Upper Endoscopy can see the mouth, esophagus and the remaining of the small intestine.  This test is often combined with the colonoscopy.  Just remind you doctor to do the Endoscopy before the Colonoscopy!!
  5.  Capsule Endoscopy – This is a medium-sized capsule with a camera in it that a person swallows.  As the capsule goes through the person’s system, the camera is taking random images as it descends. It eventually goes through the system and it is removed through the person’s feces.
  6. Double Balloon Endoscopy (DBE) – The Endoscopy instrument is placed in the small intestine and a balloon (or two) is attached.  It is pulled through the intestine to open up a stricture that the patient may have.  It can also get rid of any polyps or foreign matter that may have gotten stuck in the intestine.

There may be other tests out there but these tests are the main tests that are used to diagnose Crohn’s/Colitis or detect anything suspicious for them.  I hope this helps someone who is  contemplating on what test may be best for them, of course your doctor can help with that question also.  I do have some interesting things that have happened to me over the past few days that maybe some of ya’ll can give me some tips on how to cope/what to do.  Again, thank you all for the mail, it makes me happy to know that I can help and/or entertain someone at the same time!  Just remember to take one day at a time with this disease.  Some days may be a piece of cake while other days you don’t have the energy to get up off the couch...I know, I’m having one of those couch days today!

Chow for now!

Week of 9/26/16 – 9/29/16; What a Week!

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Hi everyone!  I just wanted to tell you about my whirlwind of a week last week…

Monday I had a day from hell, or a typical day for me.  I got up and changed my bag first thing in the morning.  Afterwards, I decided to vacuum.  During the vacuuming, I noticed that not much was actually being sucked up in the vacuum.  I decided that a good cleaning of the underneath rollers would be a good thing so I sit down Indian style on the floor and still had to bend over to clean the rollers out.  Just then, I felt a warmth on my stomach that could only lead up to no good.  I stood up and the poop was flowing out of my bag from the side into my jeans!  I put everything down and went running into the bathroom to gather my ostomy supplies to prepare for another change.  Since the first paste hadn’t had a chance to cure yet, it was a very sticky mess to get the adhesive completely off.  It takes forever when the adhesive doesn’t have a chance to cure.  So, an hour later I had my second bag on and continued to mess with the vacuum to get it to work properly.  It seemed like it took most of my day just to vacuum!  Finally around 1:00ish I got a chance to eat me a bite for lunch.  During that time, The Talk was on and they were talking about obese people on an airplane and how they didn’t like to sit by them because they overlapped onto their seat.  It was then that I heard Sharon Osbourne say she didn’t like to sit by someone who was snoring or had a colostomy bag!  It threw me for a second before I realized what she just said.  I was angry and confused as to why she said that, she didn’t mention why earlier.  The more I thought about it, the more I felt hurt and sad that someone like her, having had cancer herself, would think something like that.  So, me being me took to the network feedback and told them just what I thought and I also took to social media, as many of you already know, and let my fb and Instagram friends know exactly what I thought, especially after the day I just had!  WHAT A DAY!

Tuesday was full of hope and excitement!  I had a couple of friends send me an article about Crohn’s Disease – experts think they found a cure for it, or at least closer to finding a cure.  That gives me so much hope for the future.  If not for me, for the people who will be diagnosed in the future.  Here is the link to the article Click here.  It makes sense.

My home health nurse came Wednesday to change my dressing and draw blood.  It wasn’t until Thursday that my catheter started aching and itching.  I think it is about time to talk to my doctor and ask her when, if at all, I can get this catheter out.  It was meant to be a temporary thing and at this time, it feels more like a permanent thing.  My stitches that are keeping it in place are getting loose and therefore my catheter is moving to and fro and making it itch like crazy!  On another note, I wake up Thursday morning to my dog thrusting her paw right on top of my catheter on my chest.  Talk about jumping up out of bed!  OUCH!

This was my week in a nutshell dealing with Crohn’s Disease/ostomy issues.  I did learn how to sit and how not to sit with my colostomy.  I am constantly learning new things in that department – unfortunately, I learn by trial and error!  It could have been worse I guess – I could have been out and about or at someone’s house when it happened! Thing is, I didn’t even realize I was sitting incorrectly, I was focused on troubleshooting my vacuum!

We will get through this disease together one day at a time.  If you have friends and/or family who think they are the only ones going through something like this, please share my post with them; maybe it will brighten their day knowing there are other people going through the same thing!

Chow for now!