Sunday, August 22, 2010

Better!

I'm feeling so much better today, and yesterday/last night was great too.  I even made myself go to bed by midnight!!!  I've found some natural casing-free chicken sausages (ok, so my wife found them, but I've found them to be delicious!) with few ingredients that agree very well with me too which is a bonus!

I'm getting ready to hit the road, but when I settle in, I really want to post a Youtube vlog about the SCD and my feelings both pro and skeptical.  I will go ahead and say, even with the skepticism/cynicism, the pros are way too strong not to adhere to it and keep going with it.  I'm just having some problems with some of the claims and "science" of it...  I'll leave it at that for now.  No need for a rant on such a positive day.  Now to go PACK!!!!!

Saturday, August 21, 2010

Stress?

The Prednisone was working great... until yesterday.  Actually, even then it started out good.  I woke up with the startling surprise of constipation.  I really was a little taken off guard, but strangely happy too.  The day before, I had only a couple of BMs, but yesterday, I had several, with each one a little less formed until night-time when I was passing bloody diarrhea.  Now THIS was truly a shock.  I feel bullet-proof with the Prednisone, but have been following SCD, with the exception of one icing rose off of my daughter's b-day cake yesterday.  Maybe that was it, maybe it was not sleeping much the night before, maybe overwhelming stress of moving, maybe all or none?...  Oh, and, I stopped taking my Lialda because I ran out when I was actually supposed to be increasing it, and haven't taken Canasa suppositories in a while...  Medication is such a mind f*ck as is this whole illness.  I spend so much time trying to figure out what I'm doing wrong, or what I need to tweak when possibly the current symptoms are not my 'fault.'

SO, today.  Today, my food consists of eggs, yogurt, bananas... I think that will pretty much be it.  I've started on my new higher dose of Lialda, restarted Canasa, and will be actively accomplishing things on my to-do list so that I have less anxiety, and taking time to meditate and BREATH.  IMHO, that is controlling what I can, and hoping for the best with what I can't.  Just trying SO hard not to freak out that I'm going to have some crazy flare-up at the start of my new job... but let's stay optimistic for now! :)

Wednesday, August 18, 2010

Pred-dread?

Naw.  Not really.  I was actually relieved to have the new scrip called in.

Today, I started an eight week taper.  Two weeks at 20mg, two at 15, two at 10, and then 2 at 5.  My doctor also increased my Lialda from 2 horse pills/day to 4.  In theory, if I can get into remission, the Lialda increases my chances of staying in remission.  Two a day didn't do squat for me, but here's hoping.

I ate soft SCD all day yesterday, trying to be as gentle as possible to my gut.  I think I jinxed myself with yesterday morning's post, because the bleeding significantly increased throughout the day.  Even though I had a lousy sleep last night, I'm feeling MUCH better right now with the higher dose of pred.  My appetite is starting to amp up already, but I'm sticking to really safe foods, just going smaller portions, more often.  I'm also getting hot flashes.  I had both of these issues last time, but neither was too bad.  I'm hoping that with staying on 20mg for 2 weeks that I don't have more problems this time, but right now I'm grateful that I didn't need a high dose and that I'm going to have some relief!!!  :)  By the time I get down to 5mg this time, I will have been on the SCD for around 2 months, and hopefully that, combined with my Lialda will keep me in remission!  I'm soooo glad that I feel confident about being symptom free during the move next week and starting a new job.  I'm going to find a kick-ass doctor and prepare for great improvements in my health!  :)

That's all for now.  Peace and health to all.

Tuesday, August 17, 2010

Today's featured menu

I have this problem - I still want to eat, even when I'm sick.  There are days/times when it gets bad enough that all motivation of eating disappears, but not today.  So, here's what's for dinner, so to speak:

Breakfast:
Omelet consisting of 3 eggs and a dollop of Greek yogurt*

Lunch:
Smoothie consisting of fresh banana**, frozen peaches, a little honey, and some Greek yogurt

Dinner:
I'm currently making some chicken/mushroom/carrot soup from scratch.  It smells amazing right now.  I love everything about soup, and think it's going to be great!

Snacks(?)  If I have a snack, it would either be a banana or 1/2 of an avocado.

* Greek yogurt is my one "cheat" on the SCD.  I've tolerated it well all along and will stick with it until I start making my own.
** I use organics for several reasons.  One of which being with an already compromised gut, I don't want to introduce any extra pesticides, herbicides, or fertilizers.  I'm just sayin'...

Sick

How do I always forget how bad a real flare feels?  It's always a shock to remember the lengths my body will go to betray me...  On the positive side, I think I partially block the illness memories in favor of the good times.  That's something, right?...

My doctor never called back yesterday (big surprise), so today I'm calling them and if I don't get a response, going to the walk-in.  The cramps started early yesterday and were unbearable last night.  My stomach has definitely been more upset, but I'm happy to report that with the exception of the sci-fi alien explosion I had a few nights back, the bleeding has stayed consistently light.

I'm realizing that I am blogging to myself, but forcing myself to keep on blogging.  For now, that's all.

Monday, August 16, 2010

ihaveuc.com

In my last post, I gave a little shout-out to ihaveuc (Adam) on Youtube, but have spent more time on his page where all kinds of people with ulcerative colitis are sharing there stories and he has organized other resources as well.  It's really an amazing resource, and I wish I found it earlier.  I just posted my background story, but not sure if I really fit since my official diagnosis is "Crohn's" even though it is at least acting more like UC, and all of the information I've read on UC is much more relevant to me than Crohn's at this point.  Anyway, I don't know if anyone has even come across this blog yet, but if you do, I encourage you to visit Adam's site!

Sunday, August 15, 2010

Flare

So, I'm getting sick again, and I need to figure out an action plan.  I've been too wrapped up in diet equating to everything IBD, but sometimes I think it has nothing to do with anything.  The fact of the matter is, my symptoms started coming back when I got down to 5mg/day of Prednisone, to end a 3 week taper.  I take 2 giant Lialda pills every morning along with the Prednisone, and I don't know if it is one, the other, or a combination of both that help me feel good through the middle of the day, but like clockwork, I start feeling sick by night.  Nighttime and morning are definitely my trouble times... I wonder if that is how most people experience it?  Last night I passed something completely nasty with more blood than I've ever experienced at once.  I have to admit that I panicked.  I thought to myself that I was going to end up in an ER, but luckily things have been much better since then.  It's 5pm, and I've only gone twice today.  Once, upset with a little blood, and the second time - pretty close to normal.  It's funny (ha. ha. ha.) how this disease works sometimes.  I have had hated fatigue today, but some of that is probably from staying up so late stressing.

My thanks to people who blog and vlog about their condition.  It has really brought me comfort in some very lonely times.  Last night, I watched some of ihaveuc's videos which were just what I needed.  I have no friends in the real world with IBD, and even though I don't really know these folks who are posting, it's just nice to hear somewhat of a kindred spirit who understands what it's like to have this strange illness that grates you like a block of cheese from the inside-out.

I have to remind myself just how lucky I am, because I haven't been sick enough for hospitalization, and I've only missed teaching a couple of classes because of the disease.  I'm highly stressed because I'm about to move and start a new job - one where they like to have faculty meetings at 7am - and I don't want to go into it sick.  I don't want them to even know I have this disease to be honest with you.  I guess even more honestly, I don't want to HAVE this disease...

I don't know how long it usually takes for people who follow the SCD for it to kick in, but I'm trying hard core to do it right now.  What I don't know, is whether or not I should go to my horrible doctor one more time to get more Pred.  I want to wait it out, but I'm scared to at the same time because of the move.  Definitely something for me to chew on...