Roid Rage

Well I am back on steroids to help with pain and inflammation in my guts. Prednisone is the name of this pill, which is a commonly prescribed drug for IBD, Colitis, Crohn's. Wonderful drug - terrible side effects. I've been on and off this medication too many times to count. The side effects are very individualized - each person experiences different side effects. Some people are less lucky than others with how their body responds to it. For example, some people gain a ton of weight from being on it and some actually people get hallicinations from high doses!

Here are the side effects that I am lucky enough to get:

1. Mood swings – difficulty controlling emotions. I call this “Roid Rage”. Oh, like PMS or Menopausal irritability? Not quite. For example, a beeping alarm clock in the morning- I literally get the urge to chuck it at a brick wall. Simple things that I would normally just shrug off make me FURY filled. If I am not in the mood to talk, it becomes CRYSTAL clear to everyone around me that I just want to be left ALONE. BIG apology here to both my mother and husband, who have both had to endure the effects of roid rage...

2. Hyperactivity - A constant feeling of jitteriness. Energy bursts that last all day and all night. Like electricity running through your veins. Imagine going on a long run, with the feeling of your heart jumping out of your chest, and then that feeling doesn't go away.

3. Sleeplessness – Boy, this one is a real surprise, seeing as I can't get my heart rate to slow down! Insomnia takes on a new meaning when its your own body sabotaging your sleep schedule. For the record - sleep deprivation and hyperactivity are NOT a good combination.

4. Puffy face – My lymph nodes become swollen and I turn into a PUFFER FISH! Nobody likes to look 300 pounds in photographs, even if they weigh just over 100 pounds. Here's one of the few pictures I still have of myself when I had my "jowls" (and yes, that is a marshmallow peep smashed to the side of my face- DUH)

5. Sore joints. Suddenly sitting Cris-Cross Applesauce is not an option if I want to be able to walk the next day!

6. Sensitive teeth – Ice cold water? Hot cocoa? Ice cream? Ow, ow and ow.

7. Hair growth, followed by hair loss...because that makes total sense!? Nothing quite like asking your groom to shave your back...yeah... Then once I'm almost tapered off roids, my head hair falls out in CLUMPS. Every day I brush my hair, and I could make a wig for a Barbie doll.To this day, I could have an entire Barbie doll ARMY from my own unintentionally lost 'roid hair'. (Insert regret here...) Side note- I am convinced this is what led to my disgust of people's hair (and my own) - also why I tend to chop mine off on a regular basis. Hair=gross, haha. 

8. Hot flashes – I went to college in Bemidji, Minnesota and I must say that northern MN has got to be the coldest place on earth in the winter. It was -30 to -50 on a regular basis and yet I was sweating profusely in a t-shirt. I remember having to get up and leave class often to go outside and allow the freezing wind chill to bring relief to my skin.

9. Anxiety / Nervousness- Remember that constant feeling of jitteriness I mentioned? Well it comes with a buddy! A increased feeling of stress in every day situations!

10. Blurred vision – I usually don't need to wear my glasses for much of any reason, but while on Prednisone, I suddenly have trouble reading things, this laptop screen, etc...

11. Lowered immune response- Thank you, every sick person who's ever come into work, leaving me no fighting chance against your bacteria ridden breath! NOT ;) 

...And so this sums up my brief rant on the 'ol roid rage. I just listed short term, minor side effects that it has on me. Long term the roids pretty much destroy your body from the inside out, causing cataracts and decreased bone density, just to name a few. 

So thank you, steroids, for making me CRAZY and ever more fragile!

 Seriously though Prednisone, I know we've had this "on and off" relationship for the past 6 or 7 years and I know we've been through a lot. You've done some helpful things for my sickly body, but overall, you've made me into a terrible person- An irrational, emotional GRUMP. I meant it when I said “goodbye” last January, but you just can't seem to get over me. 

What's the plan, Stan?

As of  about 2 weeks ago,  I was diagnosed with Crohn’s Disease.  To be honest, I haven’t really come to terms with it yet. I figure I deserve a little grace soaking this in. After all, I just started believing I was all done with this whole “chronic illness” thing, and then - BAM- no such luck! Kinda feels like the chorus from

Blink182's song Wishing Well

https://www.youtube.com/watch?v=Yc_w_uIdLVU

"I went to a wishing well, but sank to the ocean floor,
Cut up by sharpened rocks, and washed up along the shore.
I reached for a shooting star, it burned a hole through my hand,
made its way through my heart..."

I must admit I knew something was up though. However, all the doctors kept saying things like, “Oh, the first year after surgery just has a lot of adjusting. Give it some time...”
So with each growing pain, I just sucked up the unexplained misery. I should have known better, and I only partially blame the doctors for being slow to action. It really took my hand to force them to scope my intestines and CT my guts again. They were just as surprised as I was when they found ulcers and fistulas wreaking havoc in my small bowel and j-pouch.

Regardless of how well I’ve owned up to the news, I still need to make some major decisions about what to do next…

The main question everyone has been asking is “Does this mean you will have to have more surgeries?”
Without going into too much detail, at this point- No.

So what exactly IS the plan?

1. Back on the ‘ol steroid Prednisone. Oh, Prednisone… That is a blog for another time…Ugh, I thought we had parted ways forever. It does make me feel a ton better being on it though. Anywho, can’t stay on Prednisone long term, because it basically destroys your bones and lots of other fun stuff!

2. Humira? - An expensive, hard core, immune suppressant drug that is injected. It is actually the only drug I refused to try prior to all my surgeries. After researching about it and becoming sketched out by all the possible side effects and whatnot, I elected for surgeries. This drug has great results for people with Crohn’s Disease, but it REALLY wipes out one’s immune system, making a person more susceptible to infections, and rare cancers. =/ Its one of those “Are the side effects worse than the symptoms?” deals…
I have literally tried all the other medications available to treat CD when I had Colitis, so at this point I am seriously considering starting it. Side note- it is something you stay on for the rest of your life, so a real commitment.  

3. Macro-biotic diet? I’ve been researching this Greek term, meaning “long-life”. It is a Japanese lifestyle of eating primarily whole grains, fish and cooked veggies. Dairy and meat are not included in the diet. It is quite a strict way to eat, but there seems to be evidence that it has helped people turn their health around and even un-do damage that their body has suffered. I am leaning towards trying this diet, as sort of a last ditch effort before signing up for Humira. We’ll see…

4. I am trying to take life one day a time. Jesus sure knew what He was talking about when He said “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

One other question everyone seems to be asking me is, "Was it pointless that you went through all the surgeries?”
Answer- NO.
At the time that I got my large intestines removed, I was soo sick and my colon was pretty much shredded up, bloody pulp that was causing me constant pain and agony. It needed to come out. It was doing me more harm that good.

But did I go through all that reconstruction for nothing then??
Answer- NO.
In fact, had they known that I actually had Crohn’s Disease, they would not have constructed my j-pouch. They would have simply taken my colon and given me a permanent ostomy bag. So I guess in a sense, I am blessed in that regard.

Gut-less

I was Diagnosed at age 19 with Ulcerative Colitis and my life has never been the same. Throughout this process, I have had numerous scopes shoved up my anus, drank gallons of radioactive sludge, taken sketchy medications and been hospitalized several times. After years of trying different medications available to treat UC, I had become so sick, that I got my large intestines removed. 
I had 3 major surgeries this past year, which leaves me where I am today...
GUT-LESS.  I then lived with an ileostomy bag for 5 months, while in between getting my guts rewired and FINALLY reconnected.

After all the surgery drama, I was RE-diagnosed with Crohn's Disease. UGH. Are you kidding me?!? 
Sneaky Crohn's Disease was masking its true identity with Colitis all those years! So here I am, pretty much full circle from where I started, just with a different diagnosis and anatomy (and a whole bunch of stories and reflections). 

Anyway, I've been thinking about starting this blog for quite some time. Some days I take a step back from my own memories and have trouble believing them. At the ripe age of 24, I've been through some painful circumstances in life, and I am often surprised by the stories I hold deep inside. They're not all bad though. I believe everything I have been through has grown me into the person I am supposed to be. 

There's a line in a song by Box Car Racer, that prompted me to start writing online...
"Will I shake this off, pretend its all okay? That there's someone out there who feels just like me, There is..."

I realize that I am NOT the only one out there who has been through such unfair, messy circumstances in life. I am NOT the only teenager who was dealt a chronic illness. I am NOT the only J-poucher that thought they had been cured of illness, only to find out that they are still carrying the same burden as before. I am NOT the only who struggles to trust God through such frustrating trials in life. 

So there ya have it, Welcome to my blog, GUT-LESS! 

I hope my stories can be an encouragement to others, and maybe bring a little humor to some very un-humorous situations.