Colon Cancer Awareness Month

So March was Colon Cancer Awareness Month and it's coming to an end.  Did you get your colonoscopy?  You know who you are.  This is such an easy procedure that so many are scared or embarrassed to do.  It can catch cancer before it spreads making remission possible.  So to help alleviate all of you fears I'm going to share with you my general experience.

Some of you may have heard that the prep is the worst part, and it is.  It is not THAT bad though.  The day before you will be asked to have only clear liquids and nothing red or purple.  This means jello, broth, apple juice, popcicles, water ice, and coffee or tea (no milk).  I like to make lime jello with sprite.  The little bubbles created with the soda just add a special zing that the clear liquid diet lacks.  You may also be asked to take a stool softener in the morning and afternoon and possibly a potassium pill.  I've had to take them on some preps, but not all.

The evening and night before you will start the lovely "prep".  The most common is Go-Lytely, but really they should have named it Go-Morely.  That is what you will be doing.  You get to mix the liquid with a drink of your choice.  I prefer to mix it with something that I don't drink often.  There is an after taste to the prep that is not good.  My go to choice was PowerAde Blue.  I can never drink it again because it always reminds me of the prep.  You will need to drink A LOT of liquid to get all the prep and stay hydrated.  Be prepared to drink, drink, and drink some more.  FYI, there have been occassions that I have thrown up from both too much liquid in my stomach and the taste of the drink.  Be aware, you  may get nauseous.

Now the prep is done.  Some people have to wait for the action to start, but I never did.  Usually I was still drinking the blue drink when the pooping began.  Be prepared to poop like you've never pooped before.  In fact, just set up a make shift bed on the toilet.  By morning you should be pooping clear fluids or maybe tinged from the blue drink.  This is a good sign.  You are ready to go to the procedure.

First things first, you will have to put on the lovely gown that your rear sticks out of.  You will get hooked up to an IV where they will give you some fluids to make up for everything you lost.  If you have a headache from the fluid loss this will help.  Next comes the anesthesiologist to go over some background.  Then off you go to the procedure room.  You will be hooked up to a few monitors, then asked to roll over on your left side.  The anesthesiologist will give you the milky juice to put you to sleep and that is the last thing you will remember.

The colonoscopy is over.  You wake up, slightly confused, back in your recovery room.  You will be given something to drink.  If you're used to caffeine in the morning, ask for some coke to help with caffeine withdrawl headache.  After a few minutes, the doc will come in.  If everything is fine (which it should be if you're not me), he will say, "See you back in 5 years for your next scope".  Then I suggest you get dressed and hurry on out.  Don't forget to grap your driver on the way out so you're not walking to the nearest fast food place to grab some real food because now you can return to eating and drinking and living your life like before.

So if you haven't done it yet, schedule your colonoscopy.  It's quick and easy and a HUGE life saver!

I'm an Old Lady at 34

I knew 30 was old, but I didn't know I'd feel this old.  I remember when I had my knee surgery in my early 20's my surgeon told me I'd most likely have arthritis in my knee in the next 10 years.  At the time 10 years seemed like the long distant future.  Now it's 10 years later and I not only have arthritis in that knee, but the other knee, my ankles, and my hips. The arthritis is mostly likely related to the IBD and not the surgery, but now I wake up every morning with sore legs.  Some days are better than others.  Most days I just need a little time to get up to speed, but some days I  need to take some Tylenol.

About 7 years ago I was diagnosed with osteopenia.  I'm too scared to get another bone scan to see if it has progressed.  Years of malnutrition and prednisone slowly ate away my bones so no matter how much Calcium and Vitamin D I took in could help.  When I think of osteoporosis, I think of little old women.  Isn't that what all the commercials show?

The biggest sign that I'm old is I'm tired ALL of the time.  When I say I'm tired, I don't just mean I want to sit down and relax.  I mean if I sit down I will be asleep within the next 15 minutes.  I have fallen asleep at work and even while sitting in traffic.  On Wednesday I fell asleep in the chair at 7:00 pm. Yes, the sun was still out and small children were playing outside.  If I'm not moving, I'm sleeping.

When I picture myself with how I feel I see my grandmother.  I loved her dearly, but she was old.  She was a little old lady with thin, wrinkly skin, a slightly hunched back, and ankles that cracked with each step.  At 34 I'm my grandmother except with brown hair instead of gray.

Living with Charlie

Who's Charlie you ask?  Charlie was my stoma.  I first met Charlie on September 12, 2010, the day after my total colectomy.  I didn't know what to think of him at first.  I mean he was pooping into a bag that was stuck to my belly.  I knew we were going to have to become fast friends to make this work.

In case you're not to familiar with what an ileostomy is, it is part of the small intestine pulled through the stomach to protrude outside of the body and divert stool away from the remaining digestive track.  Here's some pics.

                   

I didn't name Charlie until I came home from the hospital.  My home health nurse told me it may be helpful to name my stoma.  I chose Charlie, in place of Chuck, short for Up-Chuck because Charlie was always up chucking something.  Charlie and I quickly got to know each other.

Most times I didn't mind living with Charlie, but like all men, he had his moments.  I had no control over Charlie, and he would do whatever he wanted to do.  First of all, Charlie had no social etiquette.  He would "fart" any time any where.  And it could be loud!  Next Charlie never stopped spewing.  It didn't matter what or when I ate, Charlie was doing his thing all the time.  This meant I had to empty the bag on a regular basis including overnight.

To keep Charlie contained I had to wear an ileostomy bag.  This had it's own problems and was the most difficult for me to get used to.  The part that sticks the bag to your skin, the wafer, took up the entire right side of my stomach.  Just image having a plastic sticker stuck on the whole side of your belly 24/7.  It soon became uncomfortable and irritated my skin.  Fortunately, I was given some powder to help relieve this irritation, and it helped.  The other downfall of the ileostomy bag in the leaks.  I was thankful and only had two leaks with Charlie.  Once I developed a system, I was able to get a good seal and keep the same bag on for about 5 days.

Charlie was amazing and taught me a lot about my body.  I got to see how fast crappy food moved through me.  How ruffage comes out just like it went in.  And how food changes the color of your poop.  I could watch him working and was amazed by what he did.

Charlie and I were only were together for 3 short months.  There were days I would find myself crying in the bathroom because I couldn't get the wafer on just right.  But most of the time, you would never know that Charlie was with me.  Though our time together was short, Charlie will never be forgotten.

Stupidity Over Matter

I've noticed that the mind is a very important tool when it comes to chronic diseases.  It can keep you going through the worst of times, but also bring you to the darkest of times exaggerating the simplest of all problems.  For me the mind has helped me trudge on through thick and thin.

Let me digress a little.  When I was little I would fantasize about being special, as I believe everyone did.  I wanted so much to have my parents attention all to myself.  There were times that I would day dream about being sick and have my parents pamper me.  Never did I think these dreams would come true.

Now that I'm older (and much wiser), I do everything I can to deflect the fact that I do not feel 100%.  It began when I first was diagnosed with Ulcerative Colitis.  I hid the fact that things were not right for a long time.  While pooping bowls full of blood, I continued to work never saying a word.  I look back now and wonder how I did it until I remember it wasn't long ago that I was doing the same.  Just before my final flare that lead to the J-pouch surgeries I was working 10-12 hour days doing my full-time job following it up with showing homes in the evenings and on weekends.  The only days I ever took off for UC during the course of my disease was when I was in the hospital.  For me, staying home verified that I was sick.  If I could make it through a day of work, then I could fool myself that I wasn't so sick.

This is where my stupidity comes in.  I can't get through my thick, stubborn head that sometimes staying home is beneficial to your health.  This past Friday, I woke up experiencing the pain of another blockage.  I knew things were not right while dressing for work, but I wouldn't admit it and off to work I went.  As the day went on the pain got worse and worse and the bathroom trips ceased.  By the time I came home, the pain was up there.  Being the fool I am (and trying to hide all from my husband), I ate a light dinner.  The waves of pain then came on like no other.  Fortunately, it did not last long before the blockage broke free.  Another hospital trip avoided.  But because I tried to act like a normal person, I did more harm than good and was sore for another two days.

A balance needs to be met.  You can't sit at home and dwell on all your problems or you will feel sorry for yourself.  Studies show that people who are depressed feel pain more.  On the other hand, if you don't rest you will wear yourself out making yourself sicker than before.  This is a hard balance to find.  People either find themselves at one end or the other.  Lessons never learned, I'm still trying to find this balance myself.

Follow-Up with Doctor

I visited my GI doctor to see how the pouchitis was fairing.  I had been on Cipro and VSL#3DS for approx. 6 months.  We went over my current symptoms.  It's a good thing she asks all sorts of questions because half the time I forget what can be related to IBD.  She asked how I was feeling overall which is good though a little fatigued.  She asked if I had changed anything recently, and I told her about my 70-80% gluten free diet and how it has helped thicken up my stools.  She asked how often I went to the bathroom.  My response of 10x per day with 1-2 being overnight didn't make her too happy, but she wasn't unhappy with it either.  We went over the over the counter meds I take such as Pepto and GasX and how they help.  We also discussed my joint pain and if that's related to the IBD or Cipro.  I have been having pain in my ankles, knees, and back mostly in the morning but at times in the evening as well.  It is believed to be caused by the IBD, but we can't rule out the Cipro because of the side effect it has on tendons.  After a quick feel of the belly (with a little tenderness in the lower right), the exam was done.

Now it's time to make a new plan.  She came back a bit later.  I guess she had some research to do.  The new plan is I will begin Entocort 3x per day to replace the Cipro.  Entocort is a topical steroid for the gut.  It doesn't have as many side effects as say Prednisone, but still not a great drug to be on.  I am off of Cipro for some time in case by body was reacting to it and so that I do not build a resistance to it.  I will continue with the VSL#3DS twice a day.  Because I have had success with gluten free, I am being tested for celiac disease.  I'm surprised I have never been tested for it before.  I will also have my blood sugars tested along with protein levels that are increased with inflammation.

My next appointment is in June when I go in for my next scope.  June will mark my third scope in less than a year.  I feel like I have yet to leave the life of Ulcerative Colitis.  I'm having just as many procedures as before.  The good news is I can make it to each of my follow-ups this year without having to go in before the appointment is due.

Buns of Steel

I don't know of a better way to exercise those gluts than to get a j-pouch.  I am constantly having to clench my butt muscles.  If it isn't for the gas, it's for the little leakages that want to sneak out.  This may be gross to some, but it's the way of life for me.

From the moment I wake up to the overnight hours my butt is exercising.  I wish I had some answers on how to stop this, and it will be something I ask my doctor on Monday.  How do you walk like a normal person when your rear is contracted?  How do you hold a serious conversation as your clenching those buns?  I'm in constant worry that someone will notice what my main focus is on.  And that is to not let anything unwanted slip out.  Oh how humiliating?

My hope in all this is that I have those gorgeous buns of steel without paying the $19.99 for the video if nothing else!