Autoimmune Flare up or Allergies?

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Hello everyone, I hope you are doing well these days.  I am going through some things that I haven’t been through since high school.  It took it 20+ years to resurface, but it is back with a vengeance!  Maybe someone has heard of this condition or know the cause for this and can help.

Back when I was in high school, my junior year, I would get this sensation in my lips.  They would start out feeling numb then they would start itching. Before you know it, they would swell to the point where it looked like I had been on the losing end of a big fight!   I could not for the world figure out what would cause such a heinous disfigurement.  I would feel fine otherwise, I just couldn’t go out in public until the swelling went down.

My mother first took me to my primary doctor, he referred me to an allergist.  I wasn’t allergic to anything so I was referred to an Immunologist.  The Immunologist told me that it was my immune system that was going wacky and attacking my lips for some reason making them swell that way.  There wasn’t anything I can do for the attack but he did give me some small white pills that I was to take when I felt the numbing sensation coming on.  Whatever those pills were, they worked like a charm.  STORY TIME:  One day I forgot my pills at home when I was at school.  We were watching a movie in class when I felt that my lips getting numb.  I had to run to the school office and call my mother to have her bring my pills to school for me.  I went back to class and the office called when my mother was there.  When I went to the office to get the pills, my mother was still there and the office assistants took one look at me and told her she better take me home because I was a lot worse than I was before.  That’s why everyone I passed in the hallway was looking at me strangely!  It took about 2 years to fully get it out of my system where I wasn’t swelling up anymore.

Now, just about a week ago, something again is going on with my lips.  In the morning, I wake up and it looks like I just got out of lip surgery!  During the day, it will go down, not to normal, but better.  They hurt badly, are numb and itch terribly.  I just let my doctor know today because it seems to be escalating now. My daughter, Bella likes my lips now because she says I look sassy! If they didn’t hurt so bad, I may consider keeping them this way!  Again I tried to figure out why my lips are swelling like this.  Maybe my immune system is going wacky again?  Maybe allergies?

If there is anyone out there with or without an autoimmune disease that has had something similar, please let me know.  What was your Diagnosis?  What was the cure?  

Just remember to take this disease one day at a time, and we will get through this together.  Please send up a little prayer for me during this time..

Chow for now!

 

 

 

My Miracle Part I

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Hello everyone, I hope everything is going well with you.  Today, I want to talk about something a little different.  I would like to share with you what happened to me and my family that we can call nothing short of a miracle.  My prayers have literally been answered in a big way...

It was 2013 when we were struggling to make ends meet because we were living on one income.  I was in the middle of trying to get disability due to my Crohn’s Disease therefore I wasn’t able to work.  One particular time, a big bill was due and we didn’t know where the money was going to come from.  Our savings was quickly dwindling down and we didn’t feel right to ask anyone for anything – they had already done a lot for us at this time.

During this time, I always took a bath to wind down after I got the kitchen cleaned up from supper.  I would read a book and pray during this time also.  So on this particular night, I prayed intensely for our finances.

A couple of days later, I was in the bath and something caught my eye.  On the inside of my middle finger where the numbers 026 stamped on it.  It was very clear, like it was just stamped.  I kept running these numbers through my head to try to figure out what these numbers meant.  Maybe I touched something before I got into the bath, but I couldn’t figure out what.  As soon as I read these numbers, they started to wash away.  When I got out of the bath, I retraced my steps to see what I touched.  Nothing with any kind of numbers.  I didn’t tell anyone that night but it was laying heavily on my mind.  Maybe I should play the lottery?!

The next night, my husband Mark and I went out to eat on our date night.  While we were eating, I told him what happened to me the night before.  I also asked him if the numbers 026 meant anything to him.  He said they didn’t.  He was probably thinking I was going crazy!  We went about our date and went home.

A week later I was cooking supper and Mark came in with the mail.  He told me there was something in the mail from the college I went to.  I asked him to open it for me because I had stuff all over my hands.  He opened it and told me it looked like a check.  I didn’t think that was it because I was going to school on student loans.  He took it out and said it was a check and it was written for $2,226.00!  He looked right at me and said “There’s your 026 numbers!!!”  I thought for a second, it hit me and I just started thanking God right there.  There wasn’t anything on the information as to why it was sent.  God answered my prayer!

I think back now and you know what?  If I would have never told anyone, no one would have ever believed me.  I promise you this really happened, my husband can vouch for it!  God is there for us and takes care of us in our time of need.  All you have to do is ask for it and have a little faith, and you will receive.

Chow for now!

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!

The Ins and Outs of a Colonoscopy

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Hi everyone!  Hope you are doing well.  In this post I will explain what a colonoscopy is as well as why you should consider getting it.  I will also tell you a story or two about my experience with colonoscopies.  I will try my best not to gross you out too much!

What is a colonoscopy?  According to Webmd.com, a colonoscopy is a test that allows your doctor to look at the inside of your colon and rectum.  This test looks for any ulcers, colon polyps, tumors and inflammation that may be in your large intestine.  It is also a screening for colon cancer.  A person should consider getting a colonoscopy around the age of 50 unless there is a history of colon cancer or a chronic gastrointestinal disease in their family then one should be performed earlier.

A person who is experiencing the below symptoms is a candidate for a colonoscopy:

  • constant abdominal pain
  • constant diarrhea and/or severe constipation
  • bloody stools
  • weight loss
  • fatigue
  • bloating (distention)

Many people believe the preparation for a colonoscopy is the worst part of the procedure.  It is, trust me!  There are a couple of ways to prepare for a colonoscopy.  Generally, the prep begins 1-2 days before the procedure.  There is a solution called Colyte you drink the night before the procedure.  You can also mix Miralax with 64 ounces of Gatorade, Powerade or any other clear liquid along with several laxative pills.  These preps are what I have experienced and I don’t think one is any better than the other when it comes to taste.  I think it is a texture thing for me also.  I’m not into drinking thick liquid unless it comes in the form of a milkshake or smoothie!

Below are a couple of pictures of a healthy colon vs a diseased colon:

Healthy colon

Healthy colon

Inflamed colon

Inflamed colon

Crohns - Colitis colon

Crohns – Colitis colon

colon-colonic-polyp

Colon polyp

Crohns disease

Crohns disease

As a patient, you arrive at the hospital or outpatient clinic the day of your procedure.  They take you back to get you prepped for your procedure which includes putting a hospital gown on, answering a butt load of questions (no pun intended), and getting your IV.  I hate the IV part because due to the night before, I am very dehydrated and they can’t ever find a vein on the first try.  They then wheel you in the operating room, make sure you are comfortable and tell you to count down from 10.  I can never make it to 7 before I am out cold!  The next thing you know, you are in recovery and trying to wake up.  I have a little problem when I am trying to wake up – I’m still groggy and trying to put a bag on before I have another problem!  Anyhoo, they give you a drink and a snack then explain to you what, if anything, they found during the procedure.

Below is a picture of the instrument they use during the procedure:

Colonoscope

Colonoscope

The Colonoscope is a long, flexible tube that is inserted into the rectum.  It also has a light source and a tiny video camera to record anything suspicious.  (www.cancerquest.org)

A colonoscopy actually saved my Aunt’s life when she got her first colonoscopy.  Afterwards, she was told by her doctor that they found a huge tumor inside her colon.  She had colon cancer.  She didn’t feel much different than she normally did and had no idea what was growing inside her.  She had to go through a surgery to remove the tumor and made it through radiation and is now in remission.  I believe I get my strength from her – she is relentless!

I personally have gone through many, many colonoscopies in the 20 years I have had Crohn’s Disease.  While they are not fun, I know that I am free of colon cancer and if something else is seen, my doctor can diagnose it quickly and give me the proper treatment.  I hope this post answers some of your questions on when and why you should get a colonoscopy.  Please share this post with your friends and family as well.  It may save their life.  Remember to take this disease one day at a time and with time it will get get better.

Chow for now!

 

 

 

 

A New Beginning – From Dark to Light

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Hi everyone!  I hope everything is going well with you all.  I feel as if I need to tell you what it was like trying to adjust to a life changing surgery.  It wasn’t easy, but maybe it will help someone who may be going through the same situation.  I promise I won’t be Miss Debbie Downer for too long!

The first 6 weeks I was home from the hospital, I had a home health nurse come by once a week.  She answered a lot of questions I had come up with while trying to get used to my new life.  By the end of the 6 weeks, I felt a little anxious that I would no longer have someone to give me advice on taking care of my stoma.  Click here for more information on stomas.

During my time of healing, I slept on the recliner because I couldn’t sleep well flat on my back.  It was during this time that a little bit of anxiety and depression starting creeping up on me.  I wasn’t confident that I could take care of this colostomy by myself and that in turn was giving me a lot of anxiety.  Also, during my stay in the hospital I had lost 10 lbs due to the NPO they had me on.  Nothing to eat or drink for 8 days took it’s toll on my body!  I would look in the mirror and just stare at the skin just hanging off my body – my legs, my arms and my neck.  I had lost a lot of muscle and elasticity in my skin.

I felt as if I wasn’t the same person I was before – I was a totally different person who had this foreign object stuck on her and I was babysitting it for a while.  It would leave someday..that’s when the depression starting kicking in.  You see, my doctor told me that I would have this new body and feel like a whole new, better person after this surgery.  Truth was, I wasn’t feeling that at all, after all I still have some of the Crohn’s Disease left in me.  In my small intestine there was 12 cm of Crohn’s left because if they would have taken it out, that meant I would forever be on IV nutrients for the rest of my life..they wanted to spare me that as long as they could…(hence my upcoming surgery)  So now I felt like I had been jipped – I had this colostomy to take care of plus I had my CD still active and having to take care of that also.  I just gained another problem.

My first outing was at a winery.  It was the first time my husband and I got to do something together after the surgery.  All went well for a while but then I went to the bathroom and I had sprung a leak everywhere!  I immediately came out the bathroom and told my husband we needed to go.  Likely, we were leaving!  We also went to my daughter’s band concert one night at school.  Of course, when everything got quiet, my stoma passed gas really loud!  It scared me and I threw my program straight up in the air!  Both my husband and I were so embarrassed, but it was funny to see him embarrassed!  This thing can go off at any second without warning!  I’ve learned to live with it – that doesn’t bother me anymore.  Oopsy, I’ve made a poopsy!

Likely my anxiety and depression wasn’t severe and left when I got more comfortable with my body and the noises it makes.  I now have very little accidents and I feel more confident in taking care of my colostomy.  For my first anniversary of my surgery, I took a bath.  I had heard that you can even go swimming with a colostomy bag so I wanted to take a giant leap and start with taking a bath first.  Everything went well and no problems with the bag.  Since then I have even been swimming in the ocean with no mishaps! I

I just want to let you know that even though you may feel as if there is no end to your problem(s) (I’m still battling Crohn’s Disease) day after day they get better and better.  I was in a dark place during those days and what got me through is a lot of prayers.  When I believed I couldn’t talk to anyone because I thought they wouldn’t understand, I talked to the Lord, he was always there to listen.   I even started journalizing my feelings on a daily basis.  That helped a lot also. I believe going through what I went through 4 years ago has made me a better and stronger person today.  I wouldn’t wish it upon anyone but just remember to take one day at a time and in the long run, things will get better.  If you know anyone that is going through something similar, please share my post with them. It may help them to know someone else has gone through the same and survived!

 

Chow for Now!

The Big Day 2014 – Surgery #3

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Jasey and me the day before my surgery.

Good day everyone!  This post will be a very emotional and eventful one.  Having made the decision to go forward with the colostomy surgery, I felt very emotional as the clock was ticking swiftly toward the date; February 21st, 2014.  Jasey, my 80 lb dog, had been very comfortable becoming a lap dog also.  When I sat down anywhere, she would hop up on my lap as if she were a 5 lb dog.  Those days would soon be just a memory..

The whole surgery took 5 hours that day.  I had so many tubes hanging from me, I looked and felt like some kind of alien!  One of the tubes was a urine catheter.  Throughout the surgery, the doctor gave me IV saline, however, there wasn’t any output coming out.  The doctors seemed to be worried about this so someone had the bright idea to keep pumping the fluids in me and maybe they could flush me out.  This will soon become a huge problem down the road. They kept pumping the fluids in me for 2 days straight and the second night I was there, I woke up in the middle of the night and found it difficult to breath.  They had pumped a grand total of 19 bags of IV fluid in me, which in turn gave me pneumonia.  I had blown up like the Stay Puff Marshmallow Man!

First thing in the morning, the doctor ordered a butt load of tests to confirm the pneumonia and to check for blood clots.  No one could find a vein for another IV that they just removed because I was so swollen.  Finally, my surgeon looked at me and told the nurse he thought he could do an EJ on me.  Do you know what an EJ is??  EJ stands for External Jugular.  I’m gonna say it again, External Jugular.  Sorry, couldn’t do it.  Let’s just leave it at that less the drama.  So, they ended up having to call in a vein specialist to find a vein for the tests they needed.

They decided and I agreed to place a PICC line in my arm for my antibiotics and other meds I needed.  PICC stands for Peripherally Inserted Central Catheter.  Click here for information on how and when a PICC line should be used.  My daughter has a friend who was diagnosed with Hodgkin’s Lymphoma when she was 10 years old.  What made me agree to the PICC line was me thinking if Katie can be strong and get this, so can I.  She was such an inspiration to me at that time and still is.

After my colostomy surgery. Not doing well.

After my colostomy surgery. Not doing well.

I was placed in ICU for 4 days for my pneumonia.  During that time, I had to learn how to change and drain my new colostomy bag.  At first I didn’t want anything to do with it.  It was as if that wasn’t a part of my body, it was a parasite hanging off me.  Later I realized that it wasn’t going anywhere, it was never going to leave my body so I better learn how to take care of this thing.  There was this one time I was sitting in a chair changing the bag and I started pooping everywhere!  I freaked out as well as my husband.  I think I probably broke down in tears after that episode!  I also started throwing up after I received my meds because at that time they had me NPO.  NPO is latin for nil per os, meaning nothing by mouth.  Nothing to eat or nothing to drink.  Just IV’s keeping you hydrated.  I just needed a little food in my tummy to make it happy!

Looking back now I am happy that I got my colostomy surgery.  There is no more sprinting to the bathroom and worrying if I will be able to make or not.  I still feel the need to know where the bathrooms are, but it’s not in an emergency situation anymore. I had to learn by trial and error how to properly change my bag and drain it.  I’m not going to lie, I was a big ball of mess when I got home and it hit me that I will have to take care of this for the rest of my life.  It was scary.  My next post will go more in depth about what I went through and how I came out of it a different but better person.  Til then, remember to keep smiling and take one day at a time.  You have to go through hell sometimes in order to get to the other side! Love you all!

 

Chow for now!