I Know I'm Kind of Out of It, But I Thought You Just Said....

....I look better!?!? After all of that? A three day stay in the hospital, all of those tests, a colonoscopy and all of that pain and I'm b-b-b-better!?!? Don't get me wrong, it's not like I WANT something to be wrong with me but I most definitely want an answer for my pain! To Be Continued....

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As for my colonoscopy, what a sinch! I've said it before and I'll say it again the prep is the worst part. Having your innards come blasting through your rear-end with the force of a potato being shot through a spud canon is not my ideal morning constitutional(or in this case morning and/or afternoon and/or middle of the night constitutional....)
Step 1: Ducolax aka "Oh God make the pain STOP!!!!". The worst part for me is the two Ducolax pills you have to take before bed that are supposed to give you 12 hours before "anything happens". I am lucky if I get 3 hours. I learned my lesson last time. I learned that I can only handle 1 pill, not 2. If I take 2 the pain is almost enough to make me want to curl up and die but 1 is actually pretty manageable. My mom thinks I could have got away with none of these but I did not want to move onto Step 2 without this step. You'll see why in une minute....
Step 2: Pico-Salax aka "the night you will pee from your butt". If you've never had this stuff then you are obviously oblivious to it's powers. Your mid-section will make noises you previously thought only a garberator eating a fork then a spoon for dessert could make. It's a good thing you are only allowed liquids for the whole day before. I think my final count was 37 freezies, 2 cups of chicken broth, 4 Powerades and 2 bottles of water all in a 24 hour period. My advice, this is the "stay close to the bathroom because you only have 15 seconds to get there" stage....
Step 3: The morning of aka "the easy but man am I hungry" step. Take some more Pico-Salax when you first wake up. Drink until two hours before your appointment. Go to the office. Wait while you watch all of the food commercials go by on the waiting room television. Get called in. Take all necessary measurements. Get changed into hospital gown. Talk to Anesthesiologist. Get IV. Roll into Operating Theatre. Have a whiff of oxygen. Get some happy drugs. Get the GOOD drugs. Listen to Alanis Morrisette as you drift away. Wake up. Think "When are they going to do this already?". Realize that they are done. Fart a lot. Have some juice. Fart some more. Remove IV. Get dressed. Fart again. Go home. Have another nap. Fart just a few more times for good measure.... <- By far the easiest part... ;D

Just Another Manic Monday....

....although Tuesdays are just as bad for me. You know not quite at/over the mid-week Hump. One of my daycare parents actually pointed out to me today that Wednesdays and Thursdays are worst because Fridays are just beyond reach. I don't know why but Thursdays have always just been a great day for me. You'd think it would be Fridays but nope, Thursdays.
Bored yet? I am. Colonoscopy prep tomorrow night, Wednesday liquid diet and more prep, then the big show on Thursday. Told ya. Thursdays rock. I get the day off to sleep! ;)

My Thursday afternoon....

Lazy Kind of Day....

Today's anthem....

http://www.youtube.com/watch?v=fLexgOxsZu0

Gotta love lazy Saturdays!

What A Year It Has Been....

This time last year I was laying in a hospital bed, still groggy from anethesia, listening to my gastroenterologist telling me that my life would never be the same. I have Crohn's Disease. She had performed a colonoscopy/gastroscopy proceedure on me and had come to the relization that I was very ill....

But that was a year ago and I just wanted to update my status as of today. I'm not as sick as I was 365 days ago but I am certainly nowhere near where I should be as an individual living with active Crohn's Disease. Let's see. Last year vs. this year. I started Prednisone the day I was diagnosed(a rather high dose) and tapered and after five and a half months got off of it only to end up back in the emergency room and that led to being put onto Entocort(like Prednisone but more concentrated into time realease capsules for my gut) which I am still on today(and I should have been done in mid-late April). I started Imuran on a low dose in December of last year and am on a greater dose with monthly blood tests today. Of all my drugs I take I hate this one the most. I think it messes with my brain and I have a really hard time remembering anything. I also started Remicade in July of this year. I think it doesn't work so well for me because everytime I get an infusion I end up in a flare. And it makes me catch every little cold or flu. Case in point the Strep Throat/Ear Infection combo I am currently battling....
My Future: I would like to get off all steroids including Entocort. Get off of Imuran. Continue with Remicade if it is going to start working and not make me worse. Avoid surgery if at all possible unless it comes down to no other option. I am also having another Colonoscopy on September 29th to see what kind of progress(if any) I have made. This week I am also having a bone scan done(to make sure the steroids haven't completely fried my bones) and a kidney ultrasound because they are finally now listening to my complaining about the pain in my back. My Gastro is also now testing me for Lupus because so many of the symptoms I am having are very coincidental with Lupus(extreme fatigue, bone and joint pain, the digestive symptoms, red face rash, throat rash, and photosensitivity) So we'll see how this all goes, it's a process....

On that note....

Lesson of the Day....

....when taking twin two-year olds to an amusement park, don't make them wait in hour long line ups.
Now you know.

Yay, More Tests....

I went to see me GI today. She has no clue why I had a flare and was put into the hospital. The CAT Scan showed nothing, the ultrasound showed nothing, the x-rays showed nothing and all the various bloodwork showed nothing. So........

I Get: ~Another Colonoscopy/Gastroscopy.
         ~An Ultrasound of my kidneys.
         ~An x-ray of my spine, legs and kidneys.
         ~A bone scan of my whole body.
         ~A new medication I get to try for a Spastic Colon.

So far how has your week been....

Remicade Fails, Hospital Stays and Congratulations, Summer's Over....

So my second last post was a bit of a jinx I believe. The one about the third Remicade working. Well, it didn't. In fact it made me so bad that I ended up in the hospital for 3 days.
I got the Remicade on Wednesday(August 17th) afternoon and felt OK until that night. My legs always hurt afterwards but they were SO BAD that night and on Thursday and Friday. By Saturday my right side and back were in a bit of pain but not unbareable. But on Tuesday I woke up to nausea, vomiting and extreme dizziness to the point of almost passing out. I stayed home from work and slept for most of the day and went to bed(hopped up on pain meds) hoping to be better the next morning and maybe I just had a virus.
By Wednesday morning I was in so much pain I went to emerge and they hooked me up to Morphine for the pain and Tachycardia and fluids for the dehydration I had gotten overnight. They started out telling me that they would just give me an ultrasound to see what the problem was, but the internist doctor talked to me and the Cat Scan and Gastrolux were soon to follow. And if you've had that stuff you know how bad it is. Especially when you are extrememly nauseous. I only ended up getting 1 1/2 cups of 2 done and I went for the scan. When I got back from the scan they told me they would be admitting me.
So I was admitted to a room with only one other extremely senile lady who didn't know what day it was so she didn't really bother me. She wasn't even there for most of the days anyway so it was like having a private room. I stayed from Wednesday morning to Friday morning and in that time I had ‎7 blood tests, 4 x-rays, a CT scan, ultrasound, 6 rounds of Morphine, 1 major allergic reaction, 48 hours of nothing but liquids and IV nutrition, a few rounds of anti-biotics I get released with a diagnosis of ya, it was problably an infection. Nothing showed on any of the tests so they told me I could go home if I wanted to which I said "HECK YES!!!!" It wasn't that I didn't like being in the hospital it was just that I hadn't eaten anything since that Sunday night except jello and apple juice and my flares usually last a week to ten days so I was starting to feel hungry for more than they could offer there so I opted to come home. I was discharged and home early Friday afternoon and continued to get better and by Sunday night into Monday I was pretty much 100%.
I think Remicade is not working for me as this was my worst reaction to date. The next one might really send me for a flare. I have a Gastro appointment tomorrow so we'll see what comes of it. I think I mght be in for a surgery in my VERY near future....
As a last homage to my hospital stay here are my pics. WARNING: Most of these are from when I was high off of Morphine so ya....

Just eatin' my Jell-O....

 Finally go a shower....

Sister visiting....

All of my cards from my kidlets....

My stockpile of liquid foods....

My balloons my loverly mama brought me!

My crazy pole!

Where that pole leads. To the itchiest and most sore IV site EVER!!!!!

My TV/Computer/phone combo type deal that I woudn't live without....

Juuuuuust a little high....

P.S. Summer's over which is both good and bad at the same time....



Lots to talk about.... tomorrow....

Lots to share but it's late and I'm tired so I'll post more tomorrow but for now the video I made almost a year ago and just finally got around to uploading...


http://www.youtube.com/watch?v=kLwGngmFmPw&

3rd Remicade Tomorrow and Still Skeptical....

Contrary to popular belief I AM still alive, just busy with summer and all of it's craziness. Anyway, I have my third Remicade tomorrow and I have yet to reap any benefit from it. Here's hoping....

Quick! Get me to Staples because "that was easy"!....

What was I worried about? I'm not exactly sure as I sit here in my comfy recliner. Here's how my first Remicade Infusion went down....

It all started at 9 am when my mom woke me up asking me if I wanted to go a little earlier(my original appointment was for 12:30pm). I said I would be there ASAP, got up, ate breakfast, jumped in the shower, threw on the comfiest clothes I could find and we(my mom and I) were off. On the way there I had my regrets but I told myself I'd be fine.
After quickly stoping by Shopper's to pay the government my piddly little $95 dollar deductable so that I could have a $4,000 drug I surpassed the 50 or so people in the waiting room for the Urgent Care Clinic(man that felt good, almost like a VIP!) and went into the infusion room.
I met my nurse Wendy and two older gentlemen just finishing up(I came at an odd time). Wendy was VEERRRYYYy nice! She walked me through where everything is, what she would be doing, and took my weight. Then she had me sit in the (rather comfy) chair and she did my temperature and blood pressure. It was a bit high(I think because I was a tad nervous).
Then she started my IV(on the first try! WOO HOO! I have really bad veins) and stared the saline(which I hate because it burns so freaking awfully much!). She ran over to the Pharmacy and got my Remicade solution mixed up. They brought it, she hooked it up on slow drip just to make sure I could handle it, and away I went. I sat, watched the end of The View with Weird Al, watched the news about the idiot that dove down onto a pile of rocks on the weeked, then watched Hoarders with my new friend Julie(another patient whose second time it was). The nurse(who was also semi-deaf) came over periodically to ask how I was feeling, take vitals and temperature, and turn up the drip.
Well it only took about two hours and I was done. I had a few more mgs. of fluids and out came the IV(my most unfavourite part on account of the tape and came home. No affects what-so-ever except I'm a tad tired and I have a small headache.

....so that was my exciting day of boring-ness. I hope next time it's more eventful....