It's going WHERE!?

Here's the story of my first colonoscopy!  The date was January 7, 2014.

Previously I mentioned that I've had pain in my side since I can remember.  My right side, no less, so throughout my life I've gone through many tests, CT scans, X-rays, and medications. I've had diagnoses from overactive gall bladder to acute appendicitis to a simple infection. I had the same doctor for all of that.

I moved to Fort Irwin and every month or two I would get a new primary care manager (PCM), and every time I get a new PCM, I had to start all over with the tests and explaining my symptoms.  Finally, I got a PCM who looked through my previous history and took the time to ask every single symptom I have been having my whole life.  I explained to her the pain and how it intensifies after eating, the um...need for relief often, and how I'm always nauseous after a meal.  She said, "That sounds like a stomach issue, but I want to look at your intestines, too. Just in case." She smiled, left the room, and came back a few minutes later.  She said, "I've ordered a CT scan. All you have to do is schedule it."  

I looked at her and said, "I've had so much radiation pumped into me over the years I'm surprised I don't glow in the dark."  We shared a laugh, and she sent me on my way.

I went over to the radiology department of the hospital across the street from my doctor and scheduled my appointment.  I was able to get in that week, so they gave me the contrast to drink, explained how to do it, blah blah blah... I took it home and when the day came to drink it, I did, then the appointment was a couple hours later.  I had to get an IV drip of contrast as well.

I'm terrified of needles. They snagged my vein and made me bleed a LOT.  Didn't help.  I turned white and upon the verge of passing out, they found the vein and set up my IV. The technicians were super nice and they tried their HARDEST to make sure I was comfortable and even distracted me for a bit of the IV process...my fear just got the better of me is all.

So I went through the CT scan which is always intimidating.

I waited for my results. Days became weeks, weeks became months.  When I realized my CT scan had been in August and here it was November, I called my doctor. She said, "General surgery was supposed to call you.  Since they didn't, here's their number."

She gave me the number and I wrote it down.  She said other things, but all that was reverberating in my head was, General surgery was supposed to call you...

So I called general surgery and scheduled my appointment, terrified I would hear something awful about my CT scan.  

I went to my appointment and was called back to the exam room where the surgeon was waiting.  Before he could open his mouth I said, "Is everything okay?" He smiled and said, "Actually, your CT scan was very interesting!" He started scrolling through the scan and said, "These are your kidneys, they look very healthy. There's your liver, your gall bladder - both also very healthy. Your stomach looks very good as well." Then he stopped and said, "Can you point to exactly where your pain is?"

I showed him it was my right side just below my ribs.

"That's what I thought," he said. He scrolled a bit through the CT scan for a second. "You see this very bright white area?"

I nodded.

"This is your colon. This really thick part is what's interesting because it looks like it could be scar tissue." Then he said the something I never thought I would hear at 25 years old. He said, "We're going to schedule you for a colonoscopy.

*screams internally*

I know it could be worse, but all I could think was how embarrassing it was that I would have to do that.

Well, the colonoscopy was scheduled and on Friday last week, I went in for my pre-op exam.  They explained to me everything I would need to do, then they told me everything I couldn't do on the day before the procedure.  They gave me paperwork to register with the hospital, ordered more blood work, and sent me on my way. Monday morning, I ran around the post getting all my last minute stuff done. I picked up my gallon jugs of colyte (cutely named GoLytely...) and my anti nausea medication (which I didn't take).

Now, in the directions for my prep, I was to drink two gallons of colyte, which is a laxative for those who don't know, from 4pm to midnight.  Which is an 8 oz. glass every 15 minutes for 8 hours. I mixed it with clear cherry koolaid. Bad, bad, bad idea. Colyte is salty and chemically tasting. It's not good.  Mixing it with koolaid was just such an awful idea.

4pm came around and I drank the first glass.  Okay, I thought, this isn't so bad... 15 minutes later I drank the second glass. At this point I'm wondering what's supposed to happen.  Then it hits. It was an immediate need to just GO.  I ran to the bathroom; my husband was sitting on the couch playing a video game and laughing at me.

It ended up being that every time I would drink one glass, I would need to go one time. It was really weird towards the end, because every time I would go to the bathroom, it just looked like water.  I was cleared out about 1 gallon in...and I had to drink another full gallon.

I couldn't do it any more. I gave up at 11pm with just 4 glasses to go.  I was so exhausted from constantly running to the bathroom. I just couldn't.  I just...couldn't.  

The morning of the procedure, I woke up still needing to go every few minutes. I had bubble guts all the way up until I was in the hospital waiting for my procedure.

When I arrived at the hospital, they had me check in and then they handed me a gown and some socks, told me to strip to my underwear and then told me to get into the bed. The nurse said she'd be by shortly to put in an IV.  Fantastic!  That's exactly what I wanted!  A needle!  I knew about it, I just wasn't looking forward to it.

The nurse came by and said that she couldn't find a good vein, so she tried the one over the bone on my wrist...and she tried...and tried...and tried again. She stuck me probably 4 times in the same spot before giving up.  I don't know how many times it was because I felt like throwing up and was focusing my breathing so I wouldn't.  She finally pulled it out and said to the other nurse, "How confident are you?"

He came over and felt around my arm, then he looked at my wrist, then my hand and said, "You've got a good vein here on your hand, so I'm going to get that one, okay?" I nodded, thinking to myself, Here we go again! So the nurse stuck the needle in my hand and said, "Missed it."

*screams internally*

Then he sticks me again...and again...and again.  Then he pulled the needle out and said, "We'll wait until anesthesia gets here and she can do it."  I sighed with relief.  I would get to wait for a DOCTOR to do it...nothing against nurses as I have several in my family, but the ones at that military hospital are very bad at what they do.  So I was starting to relax and was waiting for anesthesia to come and talk to me.  Then the third nurse in the room said, "I'm going to try getting her IV in."

*screams internally*

Let me say something about this nurse really quickly.  The only thing separating me and the other person getting a colonoscopy that morning was a curtain, so I could hear the conversation that this nurse was having with that patient.  She at some point said, "I'm doing so bad this morning." Then at another point she had said, "Oops, guess I gotta try another vein," and she also said, "Sorry I had to stick you so many times."

Anyway, she came over, felt around my wrist and said, "You have a great vein here, but I can't see it. I'm going to try and get this one."

I started crying. I couldn't handle it anymore. I'm not good with needles and I was already high anxiety because I didn't feel well, not to mention everything she had said to the previous patient I was already not expecting her to do well.  Because I started to panic, she decided not to try.  

THANK GOD.

Not five minutes later, anesthesia comes in. She said, "I hear your veins are giving us some trouble!" She smiled and had the kindest face I'd ever seen. I relaxed a little and said, "Yeah, they've already stuck me a few times."  She replied, "Well, I'm going to assume that you're pretty dehydrated, so let me look at your veins." She pulled my arm out straight and she said, "You've got good veins!" She got the needle ready, counted to three and BAM! IV's in.  First try and it didn't even hurt.

She left the room for a moment and then she came back and asked if I was ready to go. She wheeled me down the hall, told me to lie on my side, she put something in my IV...and then I woke up back in the room I started in.

All that prep, all that distress, and I don't even know what happened. I woke up in good spirits, and I must have been funny because everyone was laughing at what I was saying...though I don't remember what it was.

When I was finally coherent, the doctor came and showed me pictures of my insides. One picture in particular showed me the scar tissue and he told me, "This is exactly where you showed me your side pain is."  Then he said, "We took a sample. Based on it's appearance, you either have Crohn's or ulcerative colitis. I won't know for sure until the biopsy comes back. Call us Monday if we haven't called you to schedule a follow up."

And there you have it, my first colonoscopy!  I've had one other one since then (August of 2016).  I'll have to have one every year for the rest of my life...so I guess in four months I'll probably have another one.

How it all started.

I sat down to write this yesterday, but I realized that I needed to consult some journals and my other blog to get a good idea as to when it started.  Because you see, there were a lot of things that lead up to my diagnosis that all seemed unrelated to it.  Looking back I can see the signs were there, but I didn't realize it.

So hang in there because this might be a long one.

I was 13 years old and spending the night at a friend's house.  It was around two in the morning when I started to not feel well.  I figured it had something to do with the copious amounts of Pizza Hut and Pepsi that we had consumed that night.  Being nauseated at a slumber party wasn't necessarily unusual for me because I'd always had a touchy stomach, but tonight was different.  My stomach actually hurt.  Physical pain in my right side, not just nausea.  So I turned in, thinking that maybe going to sleep would help.

Spoiler alert:  It didn't.

The next day when I went home I told my mother about how badly my stomach had hurt the night before and that I had a lingering sharp pain in my side.  Thinking it was my gall bladder or my appendix, my mother took me to the doctor.  I had an X-ray and CT scan sometime later in that week.  During the follow up appointment, the doctor laughed and said, "You see all that?"  She pointed to these weird bubble looking things all throughout my intestines and said, "That's poop.  You're really backed up."  Then she prescribed me mineral oil and sent me home.

It was embarrassing but I was happy to have what I thought was the answer.

My side pain never went away.  I was an efficient pooper, though!  Thanks for that one, Doc!

I didn't go to the doctor for the sharp pain in my side for a while after that.  I basically suffered in silence.  When I started high school, the pain was still there but now any time I got that twinge of pain, my stomach would make these terrible noises.  The kind of noises that even when the class wasn't quiet, everyone could hear.  And everyone knew it was me.  Even my teachers commented on the noise.  So I would always lie and say I'd skipped breakfast and they'd heard my stomach growling.  My teachers weren't fooled but I think the students were.

Fast forward to college (ages 17-19).  I've only just started to go to the doctor again for my side pain as it had become unbearable sometimes.  X-rays and CT scans.  Nothing new diagnosed.  My doctor thought I was full of it and was looking for pain medication.  Which to me makes no sense as I had never asked for any such thing.  I kept going around and around with my doctor, him thinking maybe it was gas, constipation (again), or that it was in my head.  He literally told me that the pain I'd been dealing with for years was in my head.

So I stopped going to the doctor altogether because I knew he didn't believe me and he was the only doctor in my insurance network (thanks, Tricare!).

Fast forward again to when my husband joined the army and we'd moved from Florida to California (ages 23-27)

I had just had a baby six months prior to deciding to go to the doctor again.  It seemed that my pain in my side was a little less than it had been, but was still there.  It was tolerable at this point, but it might just be that I was used to it.  My doctor sent me again for X-rays and CT scans.  She tried me on several different medications for gas and acid reflux.  Things that you would do when you're doing a process of elimination.  She'd have me come in for follow ups and ask questions about whether the medications were working or not.  She would feel and listen to my stomach.  I kept worrying that things would end up like my first doctor and she would start thinking it was all in my head.

Then one day she was feeling my stomach and I winced.  She noticed.  She said, "That's not where your gall bladder or appendix is."  So she sent me for an ultrasound of my pelvis thinking maybe it wasn't stomach related at all, but related to my ovaries.  One very invasive ultrasound later and my doctor told me that I needed to go see the general surgery department of the hospital.  She said, "I think we need to send you for a colonoscopy" (age 25).

So I had a colonoscopy when I was half the age that people normally get them.  After my colonoscopy the doctor handed me several physical images as well as a disc with the same images and gave me discharge paperwork telling me to sleep off the sedative they'd given me and that they'd asked Tricare for a referral to a gastroenterology specialist.

As soon as my insurance approved my referral, I went to the specialist.  The outside of the building was nice with well manicured grass and a pretty little tree in the center of their "court yard."  The inside looked like someone wiped their feet on every inch of the walls and there were huge water spots on the ceiling.  On that note, let me say that looks can be deceiving.  While the waiting room looked disgusting and didn't have any pictures or anything on the walls, the actual examination rooms were beautiful and sparkling clean.  So I'm not sure why it was so gross in the waiting room.

Anyway, I saw my specialist and she was wonderful.  She was kind, answered all my questions, and was very thorough.  When she looked at the many images, X-rays, and CT scans on the disc that my primary doctor provided, she said, "You have Crohn's Disease."  She then went on to explain what it was and that she was putting me on Mesalamine to manage symptoms.

This seemed to help.  I hadn't had any side pain for a long while.  That is until August of 2016 (age 28).

I had moved to Texas by this point and was enjoying my life.  My dog and I were walking 5 miles every day, I was finally able to lose some weight and started really feeling good about myself.  Then it all went to crap--literally.

It seemed to happen all of a sudden.  It started with me feeling like I had to run to the bathroom immediately after walking my dog.  I chalked it up to the fact that exercising can just make things move easier and so I ignored it.  That feeling of urgency immediately after walking my dog lasted about a week before it became urgency all the time.  I was having bowel movements 6-10 times a day and 3-4 times a night.  So all the time.  I couldn't walk my dog anymore as I was terrified that I'd need to use the bathroom and wouldn't be able to find one.

Soon after I stopped being able to walk my dog, the bleeding started.  Every time I went to the bathroom there was so much blood that it looked like a heavy period.  I finally decided I couldn't wait anymore and went to the doctor.  My doctor put in a referral with Tricare and it took two MONTHS to finally get an answer from them.  I called them repeatedly asking about my referral, all the while still bleeding.

Finally they approved it and I went to another gastroenterology specialist.  The first words out of my new gastro's mouth were, "You're going to need a colonoscopy and an endoscopy."  I expected that, but it's still unpleasant to hear.  Colonoscopy went easier than the first one I'd had and upon discharge they prescribed me a heavier dose of Mesalamine along with iron supplements because I was deficient.  You know, because of all that bleeding I'd been doing for months.

After the endoscopy portion of my very thorough exam, I had a follow up appointment with the doctor.  At the follow up she tells me that my original diagnosis of Crohn's was wrong and that I actually had what's called Ulcerative Colitis as well as Gastroesophogeal Reflux Disease (GERD),  She prescribed me Prilosec along with my Mesalamine to try and control symptoms.

I changed my diet and eliminated all foods that would make my flare more active.  I had hoped that would help, but it never really seemed to.  I was still bleeding a lot.  January of 2017 I ended up having a Sigmoidoscopy which is like a mini version of a colonoscopy.  The doctor basically told me that the medicine wasn't working as well as it should.  So now I'm on double the highest dose of Mesalamine that you can be on.  As well as 1000mg Mesalamine suppositories twice a day.  So instead of 1000mg once a day and an oral Mesalamine of 800 three times a day, I'm double all that.

I have to give stool samples roughly every month which is kind of embarrassing because the lab tech is the same woman every time I go.  I mean, I know that's her job, but I don't like having such an intimate relationship with someone I don't really know.

I have an appointment with my doctor coming up soon and I will most likely update when I get to that, but I get to tell her something I'd hoped I wouldn't:  I'm still bleeding.

Introduction

Hello, my name is Kari.  I struggled with the decision to start working on this blog, but a lot of people have told me that they would love to learn about what I'm going through.

A little about me first!  I am a stay at home mom and my husband is in the Army.  We live here in El Paso, TX with our two children "V" (boy) and "O" (girl).  I have three dogs:  Fatsticks, Mia, and Ember.  I have one cat:  Punk, who really lives up to her name.

I have a couple hobbies.  I cross stitch and crochet, I read, and I play video games.  My favorite games are any of The Legend of Zelda series, most Nintendo titles, the Dark Souls series, and most Konami games.  My favorite book (since 9th grade) is East of Eden by John Steinbeck.  My favorite movie is probably American Psycho and my favorite TV show is Bob's Burgers...only because Linda and I are so similar that it's scary.

I'm not a professional blogger, but I do love to write and put my thoughts somewhere.  This blog isn't really for anyone in particular, it's mostly for me to talk about what's going on and if someone who is struggling with symptoms of UC reads this and it helps them, then that's perfect.  Even one person helped is wonderful.

Anyway, on to the actual topic that I want to be discussing.

Ulcerative Colitis (UC) is basically my body attacking itself.  My colon has ulcers and as of right now there is no known cure.  I can go into remission, but I will not be cured.  As of writing this introduction, I am in an active flare.  I have been since August of 2016.

This post is just to give some basic information and introduce myself.  I will probably post here regularly and keep everyone informed of different things I'm going through with my UC.

Thanks for reading!