Monthly Archives: September 2016

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!

 

My Decision to Have a Colostomy

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Good day everyone!  Sorry for the delay in posts but my husband and I just returned from the Smokey Mountains for our 5th anniversary celebration.  We both really needed this getaway in a bad way!  Between me receiving some not-so-good news regarding surgery last week and my husband being overworked, we were really looking forward to this vacay!

I thought I would give you a little insight about my misfortunes that led to my last surgery, the BIG surgery.  Surgery #3 in 2014 is the resection that ended in a permanent colostomy.  I was getting fistula after fistula; as soon as one would get fixed, another would pop up somewhere else.  What is a fistula?  I also had several abscesses, which are collections of pus that accumulate in a local area and are filled with bacteria.  This bacteria causes inflammation and swelling, therefore, it is very painful to sit or even stand for any period of time. I was miserable during this time and knew I wouldn’t be able to tolerate this much pain very much longer.

At that time, I had tried every medicine that was available on the market and even tried my luck in a trial study (another story) yielding negative results.  My gastroenterologist scheduled a colonoscopy to see if my Crohn’s Disease (CD) had progressed.  What is a colonoscopy?  This colonoscopy was the most bloodiest and painful one I had ever had. When I woke up, I looked around and saw blood all over the front of my gown as well as on the bedding of the gurney I laid on.  I have to admit I was a little freaked when I saw this!  My doctor came in the recovery room and told my husband and I that my CD was located just inside the anus and rectum and up to my Sigmoid Colon.  This is why I was having so many fistulas and abscesses was because that is where my CD was located and I needed to have surgery that will result in a permanent colostomy as soon as possible to get the disease out of there.  She said it looked like hamburger meat in there!  I took about a week or two to make the decision to have the surgery or pursue other ways of healing.  In the long run, I knew I should have this done and over with so that I could move forward with my life as much as possible.

I wanted you to know what I went through and the feelings that led to having this permanent change to my body.  Surgery is a big decision to make and it isn’t to be taken lightly. There are a lot of things that could go wrong during surgery and afterwards.  In my next post, I will tell you about my colostomy surgery and how I felt afterwards.  You know, I’ve come to accept that if anything could go wrong, it will be to me!  I’m okay with this now, but it took a lot of time to accept this – I am a difficult person to treat!  All I can do is keep smiling (although some days, I admit, may be difficult to do) and take one day at a time !  The power of positivity and prayer is the key to healing!

 

Chow for now!

Another Bowel Surgery! (#4)

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Good day everyone!  Well, I received some not-so-great news today…Looks as if another surgery is somewhere in my near future.  I have some scar tissue from the last surgery wrapped around my intestine that needs to be removed and 12 more centimeters of my small intestine that needs to be removed because it is thickening and closing up.

The surgeon also told me that I would be on TPN for the rest of my life after this surgery because my short bowel is going to get even shorter (SBS – short bowel syndrome).  That means I will not be able to absorb even more nutrients so I will be receiving them through a central line.

I am still getting a second, maybe third opinion before I say yes to anything.  I’ve got til the end of October to make a decision –that’s when my doctor cuts me off my Entecort!  I’m going to do my best to stay away from surgery, however, I don’t want it to turn into an emergency situation either.

I will be okay, it is just a lot to take in right now.  I have so much planned but now it looks like I may have to put my life on hold again.  I hate doing this to myself let alone my family.  They have to put their life on hold as well to arrange their schedule to fit my recovery. I am very thankful I have them, but I also feel guilty that everyone’s life has to be put on hold as well.  Please keep me in your prayers while I am trying to make the best decision for me.  It is going to be difficult, but in the meantime I am going to keep a positive attitude about this whole situation by taking one day at a time!

Chow for now!

 

Working Full Time With Crohn’s Disease – and Disability

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Good day everyone!  I hope you are doing well.  So far so good on this end.  In this post, I will tell you my experience trying to work a full time job with Crohn’s Disease.  Not an easy task!  I worked, worked, worked until I could work no more!

Once I graduated from college with an Associates degree in Medical Laboratory Technology, I got my first job 3 hours away from home in St. Louis, MO.  There, I worked as lab technician in a hospital.  Loved that job.  I then went to a pharmaceutical job working in quality assurance. It was here, at age 25 that I was diagnosed with Crohn’s Disease.  At that time, I had never heard of Crohn’s Disease and I thought okay, I will just have to take medicine the rest of my life to control this.  I thought you could control it like high blood pressure – just take a pill!  Boy, was I ever wrong! I eventually ended up at an aerospace company working as a chemistry technician.  While I was working there, I had my gallbladder removed, a fistula surgery and my first and second bowel resections.  I also had to apply for their Family Leave program.  This program would allow me to go to my doctor visits and have bad Crohn’s days without it counting against me (supposedly).  All was good until I reached the age of 40.  Then all hell broke loose!  My body was falling apart and soon I was greatly relying on the Family Leave.  Eventually, after 10 years of working at this company, I was laid off.  That’s when the stress really took over and I was looking at another fistula surgery, multiple abscesses and another resection in which I ended up with a permanent colostomy (another story).

It was then that I decided that I can no longer hold down a job because every time I turned around, I was in the hospital for something else related to Crohn’s or I would have many bad days linked together where I would feel like I couldn’t move no further than the couch.  I talked to my husband and we decided to try for disability for me.  This was a really hard decision for me because ever since I graduated from college at the age of 22. I have been providing for myself and moving forward with my life.  To this day, it is still very hard to imagine not being able to do so and having to rely on others to provide for me.  Some days it gives me a little bit of anxiety when I think about the future.  I’m still wanting to move forward with my life but now I have to think of other ways to do so besides work.  Who knows, maybe one day I will get better and be able to work again?

Anyhoo, I started the process of applying for disability.  I was denied the first time, I was denied after I appealed, and finally I had to get a court date for the hearing.  During this process, our family went through some major financial hardship.  Since we were living on one income, I had to come up with some creative ways on how we could cut corners on our spending.  My aunt was telling me that she sometimes makes her own laundry detergent.  I looked it up and it makes an entire 5 gallon bucket.  That saved us bunches right there!  Also, we started staying in more to eat instead of going out, which was probably better for our health anyways.  I also started cutting coupons and becoming one of those people who wouldn’t buy anything or eat anywhere that we didn’t have a coupon for. I hate to say this, but I sometimes miss those days where everyone was working together for the same goal – survival!

family sign

Our extended family was phenomenal to us during this time.  They would help us as much as they could without us even asking for anything.  If it wasn’t for them, I believe we would never have made it through.  One of them paid my vehicle off for us, one of them told us we needed to take our kids on vacation so he paid us to schedule a family vacation in which was the furthest from our minds at that time!  Another would give us random money to pay some of our bills even though we didn’t ask for any.  It goes to prove that we can always lean on our family when the going gets tough and of course we would do the same thing back when we get on our feet again tenfold. We ourselves had just been married for 6 months when I was laid off then my health went sour and has been that way ever since. Sometimes I wonder if my husband has ever thought he married a lemon.  He needs his money back on this one because she is a broken one!

To sum it up, I did end up receiving disability after a 2 year battle, and somewhere in the midst of all the chaos, I managed to receive a Bachelor’s degree in Criminal Justice through an online college.  Someday, when I get better, I want to be able to work in a crime laboratory.  Why not?  I’ve worked in every other type of lab!  I am adding a link to the right of my side of my page to the Social Security Administration so that you can receive more information about disability.  I’m not saying it is for everyone, but there is help out there for the people who really need it.  Remember to stay positive, keep smiling and we will all get through this one day at a time!

Chow for now!

 

 

 

 

Crohnie Meds and Useful Info

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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!

 

 

 

 

First Post Ever – What is Crohn’s Disease?

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Hi everyone, Kelly here!  I want to invite you to take a look at my “About Me” page to get a little bit of information of where I am coming from.  In case your not sure exactly what Crohn’s Disease is, in a nutshell, it is a chronic disease of the intestines that contains ulcers and open sores.  It is the most intense pain one could ever experience.  Crohn’s Disease can take hold anywhere from the inside of your mouth to the bottom of your anus, basically your entire system can be affected.

 

I was 18 in college for a degree in Medical Laboratory Technology.  In order to get blood to perform tests, we had to draw blood on our fellow classmates.  I can remember a particular test we had to perform for Rheumatoid Arthritis (RA). Mine was the only test that came out positive!  At 18!  Back then, I would get knee pain one week out of the year and I called it my “author” but didn’t realize until that day that it was truly arthritis!  Little did I know then that arthritis can be a symptom of Crohn’s Disease that would rear it’s ugly head years later.

Anyhoo, I wanted to give you a little overview on Crohn’s Disease so you will know a little bit of what I will be chatting about and am going through.  I have included a link to the Crohn’s and Colitis Foundation of America because it’s such a good reference to have for this type of chronic illness.  I have so much information and experiences, new and old, that you may be able to relate to or may want to know more of.  Together I believe we can get through this horrible disease one day at a time!

Chow for now!

Kelly