Colonoscopy : FSGS Sucks

I had an appointment with a GI doctor last week to try to uncover the culprit behind my ridiculous intestinal issues. Unfortunately for me, that meant a colonoscopy. I was supposed to have one of these in 2006 because I thought I had IBS, but I chickened out after reading the prep instructions. It seemed that that would be kind of idiotic this time since I've been complaining SO much about my diarrhea. I just figured that it couldn't hurt at this point...at least we could rule anything out with it.

So, what does a colonoscopy entail? Well, aren't you all so very lucky that I'm going to share all of this with you????  Well, it started out by me getting my "liquid diet" ready. 

Here's where my first problem occurred....I didn't properly READ the directions, and found out at 5:30pm the night before that I was supposed to be on a clear liquid diet since that morning!!!  Yes, that was AFTER the Skyline chili and this leftover pot roast from the night before. I don't know what it is about me, but whenever I have to restrict my eating (like fasting for a blood test or something), I gorge...completely.

This was a particularly bad idea because I was completely full before I realized that I had to drink 32 ounces of this prep stuff, PLUS 16 ounces of some other clear liquid AFTER that.  I did NOT feel good.

Here's a video of me drinking this prep stuff...my facial expression is priceless.

Now, after I finished drinkin this stuff (I started at 5:30pm), I kept track of every time I pooped....it was numerous....

6:35p

6:47p
7:05p
7:15p
7:16p
7:22p
7:32p
7:44p
8:14p
9:03p
9:44p

 (I'm not even exaggerating...I may have actually forgotten a couple).  awful.  ick.  eww.

And here I am after round 1.  Notice the slight change in my demeanor.

I had to get up again at 2:00am to do the 2nd round, and it was WORSE.  It took me 2 hours to drink that crap (as opposed to the 1 hour it took me the first time).  

And here are my poops:

3:34a
4:08a
4:09a (it's incredible how cold I am at this point...shivering)
4:16a
4:32a
4:57a

I think the only reason I stopped pooping was because I apparently dozed off around 5:00am.  Joacim woke up at 6 or 6:30, walked the dogs and took Izzy to daycare, and I got up around 8:30am for my 9:00am appointment.  The beauty of this one is that I didn't give 2 shits how I looked.  No bra, no hairbrush..nothing.  I DID brush my teeth though :)

Here's Joacim and I in the waiting area.  I am BY A GENERATION the youngest person in here.

All I want is a donut at this point...I'm soooo hungry....

Now here's where it gets pretty funny, if you ask me. I had my phone with me because I was reading a book while waiting.  When they wheeled me back in the room, they quickly gave me the sedative.  Apparently, I videotaped EVERYTHING.  I have absolutely no recollection of this (THANK YOU DEMEROL), but I found it on my iPhone later that night...

These are pretty freakin' hilarious from my point of view, especially since I don't remember a thing.  All I can say is that I'm a happy drunk AND a happily sedated person :)

Do you notice how many times I say, "I have a blog"???  God, I'm so annoying!  :)  And I was coherent enough to get photos of everyone in the room...I am ON it!

This, I'm gathering, is the student nurse

And my doctor, Dr. Troiano.  He's a New Yorker, with the thick accent and all, but totally cool.  He started listening to The White Stripes right before I went to my "happy" place.

Recovery nurse...

This video cracks me up the most...especially at the end.

And......DONE.

And Bob Evans.....

I agree with everyone that said that the prep was worse that the actual colonoscopy. Couldn't agree more. That prep liquid was HORRIBLE. AWFUL. DISCUSTING. I swear..pooping wasn't that big of a deal because that's been the story of my life for the last month, but that prep liquid....indescribable. And sadly, this is only the first of many in my hopefully long life.

I hope you've all enjoyed my little story here ;)

May 17 Clinical Trial baseline visit : FSGS Sucks

I'm officially in!  The clinical trial...that is.  My biopsy slides have all been read and confirmed...blood tests, urinalysis done, and I'm a perfect candidate for the trial.  So yesterday, I drove down to Cincinnati Children's Hospital to get my baseline labs done.  I LOVE LOVE LOVE the people I'm working with down there.  Barbara and Dr. Goebel are THE BEST, and I really feel that they're excited about the possibilities that this trial could provide.  Plus, Dr. Goebel always has at least one good story for me :)  So, pending the results of my colonoscopy, I should be randomized sometime next week.  If something is found during my colonoscopy that requires treatment, then that could derail things, so keep your fingers crossed that ti all comes out ok.

And now I just wanna give anyone that's curious an idea of what it's like to participate in one of these.

This is a LOT of blood.  Some of it is for the trial, and some of it is for the National Registry.  I agreed to provide samples for it for any future tests that need to be performed for people like me.

Here I am holding my arm at heart level for 5 minutes before my blood pressure was taken.  No idea why, but that's what the protocol says to do.

 Temperature

 And blood pressure.  I had my weight and height done too, but that's not too interesting.  Well, maybe the temperature isn't either, but I had my phone handy here :)

 After the blood work and vitals, I was put in another room.  Here, I answer a survey on paper and on the computer about my emotional and physical state.  I'll do these surveys periodically throughout the study.  That binder is full of info on ME.

 And here's the room I was in.  This is a brand new part of the hospital specifically for research, and it's VERY warm and welcoming.

 They even have things for kids to do while they're waiting.

 After the survey is over, Dr. Goebel comes in and we talk.  He gathers info such as how I've been doing, how's my swelling.  We talked about my colonoscopy (of which he also had a story), and he was telling me about a patient of his who had "FSGS from hell".  I asked what that meant, and I have to say that I felt VERY lucky that my FSGS is fairly mild.  They eventually ended up taking this patient's kidneys out because of all the damage it was doing to him and his heart.  He was on PD (perioteneal dialysis), but it was so hard on his heart, so they also put him on haemodialysis for part of the time to be easier on his heart.  Long story and there's more involved, but this patient paid a hefty price for some semblance of health.  He had a transplant, and they were very worried that his FSGS would recur because it was so viscious, but it hasn't!  Good news!

An that was pretty much it.  I will come back to Cincinnati about 2 weeks after I begin the drug part of the trial, so it could be a month or so.  It feels VERY good to be taking part in this.  And as a treat to myself, I stopped at Skyline chili on the way home.

A calm weekend : FSGS still sucks

Why is it that I feel relatively normal during the weekend but when Monday comes around all the shit starts?

It was a good...no great, weekend health-wise.  No headaches, no poop...the swelling was still there but it kinda feels like it's not going away, so I'm just not acknowledging it.  No nausea either!

But then this morning.  Poop.  Damn it!!!! 

I got my prep kit for my colonoscopy on Wednesday.  I think I'm most worried about tomorrow night...what the HELL am I gonna sustain myself on?  Clear fluids (nothing purple or red), broth and jello.  Super.  I'm already hungry just thinking about it.  Sadly, I'm just hoping that I'll be nauseous so I'm not thinking about it.