Tuesday, December 4, 2012

Crohn's & Colitis Awareness week.




Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO
Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet
Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 
Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.

2 comments:

  1. Thanks for sharing this! My dad has suffered with Crohns disease 45 years ago. He is now 68 and was just given the "we have nothing more we can do for you" speech by his doctors.

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