Be Aware!

Today is Ostomy Awareness Day 2013!!!
Yes, everyday here at MGAS is ostomy awareness day, but today we are challenged to make it nation wide.
I was talking to my sister yesterday about why some in the ostomy community don't watch Grey's Anatomy.
 There was an episode back in 2009 when a young woman was brought into the hospital after being "chopped" by a boat propeller. At one point she is facing another surgery and asks Dr. Yang what the worst outcome would be. Dr. Yang replies that the worst thing would be ending up with a colostomy. The girl reacts like it is a fate worse than death. Later in the episode, Dr. Yang is chastised by Dr. Bailey for threatening the patient with a colostomy bag and Dr. Yang asks her how is she expect to sugar coat a colostomy.
Okay, my recap doesn't do it justice but I'm sure you get the gist.
When I was talking to my sister about this yesterday we discussed how, yeah, that's the reaction we would expect.  Then *epiphone* THATS WHY SPREADING AWARENESS IS SO IMPORTANT.

I know that having an ostomy is not a fate worse than death. My family knows it. My close friends know it. My blog readers know it. But if you don't have one, or know someone who does, how would you know? 

Friends, let's change this stigma. More than half a million Americans are living with an ostomy. Let's do them a favor and raise awareness that it is not a fate worse than death. It is a fate of life, love, family, beauty, health...and so many other things.

Do me a favor and share my blog, follow UOAA's Facebook page, talk to your friends if they don't know what an ostomy is, or spread awareness in your own way.

Leave me a comment on what ostomy awareness means to you.

Let me Explain

I realized that the title of my last post is a little confusing. Sorry!
I have been trying to make a huge decision for the last year. See, when my doctor took out most of my colon, he left a little colon and my rectum. (Different than anus, I promise!) He did that for a couple reasons. First, because it is more dangerous to operate in the pelvic region. Also, so I could have the choice to reattach with my small intestines.
I have that choice.
Either choice has pros and cons.
If I don't reattach, eventually, the rest of my colon and rectum will have to be removed.
If I do, I will almost definitely have to be treated for my Crohn's Disease.
If I don't, the disease might never flare up again, but it might anyway.
With my skin problems, it is tempting to have the surgery to reattach. No more bags attached to my abdomen. Sounds like bliss.
However, the medication I would have to be on for my disease has ugly ugly side affects.

Obviously, I don't have to decide today, or even tomorrow. I do have a scope to check my small intestines for disease coming up on Tuesday. If my small intestines are showing signs of disease, I will have to be on medication anyway...so that might make my decision easier.

Decisions, decisions...

I'm going to start out by acknowledging that I haven't written a post in a while. I could blame it in being busy. The mancub and I traveled to Colorado and I'm still busy with my classes. It would only be a half truth, though. Honestly, I haven't been feeling so bright and shiney lately. I told myself when I started this blog that no one wants to read a post full of complaining. So I waited. I waited to be inspired or to feel like I could write something uplifting and encouraging. 

It never came. Days and weeks passed and I still have a cloud over my head. So I thought, screw it, I'll post anyway. 

Friends, I'm struggling. I'm almost ashamed to admit it, but it's true. Physically, I'm dealing with skin issues. My skin is red and sore under my ostomy pouch. I am doing daily changes. Sometimes more than one a day. Along with the physical discomfort, it is causing me mental distress. I am scared to leave the house some days. I just *know* that within hours my pouch will be falling off. 

Am I losing myself? 

Something strange happened when I was in Colorado. I spent a lot of time with some friends I worked with about seven years ago. Two friends, separately, told me that I was different. Not just older, different. Very different. Less carefree. Less confident. Less happy. Basically, everything I prided myself in, is gone. 

How do I get me back?

Is it even possible?

The Power of Support

You're looking at Metro Maryland Ostomy Association's newest member!

I have finally taken the step to join my local ostomy support group.
I thought I would feel uncomfortable because these groups are generally an older crowd. But then I thought... seriously? I am worried about older people? I LOVE older people!
I was right, of course, there was no reason to be worried at all. everyone was friendly right off the bat. When I stood up to introduce myself, I noticed a familiar face. One of my WOCNs (wound, ostomy and continence nurse) from my surgery was there! She recognized me right away. (Still trying to decide if that's a good thing or if I was an exceptional pain in the ass patient.)
At this particular meeting we separated into groups based on the type of ostomy you have; ileostomy, colostomy or urostomy. I sat with the other 8 or 9 people who have ileostomies. We talked about everything from clothing options to health insurance problems.
It really was comfortable and reassuring to sit down and speak with people of all ages, race, economical status who share this situation.

Last night, I had dinner with my cousin. (Hey, S!) Her dad, my uncle, has been through an eerily similar sickness and surgery. He has recently had additional surgeries to get a j-pouch. Talking to her made me realize a very important thing. It is very important for people with ostomies to seek support, but it is equally important for friends and family to have support and community, as well. Those who went under the knife are not the only ones whose lives were thrown upside down. An ostomate's spouse, children, parents, siblings, etc... all had their lives and realities changed.
I am hoping, in the near future, to have feature blog posts written by other ostomates, friends, and family.

Happy Stomaversary to ME!

I have thought about this post for a couple days now. What would I say? How should I approach this milestone? Humor? Sadness? Should I attempt to express how much my life has changed or focus on how grateful I am to be alive? Should I recount the details I remember? Should I let my family tell the story?
I'm just gonna wing it.

Hello from the ICU!

One year ago I almost died. I'm okay with that. I have come to terms with that. Most days I can accept that I will never be the same person that I was 366 days ago. My body will always show scars. My digestive system will always be incomplete.

I will always be aware of pain, changes in my stool, sores in my mouth. Words have been added to my vocabulary. Ostomy, Crohn's Disease, fistula, resection, stoma.

I will forever be watching my son, looking for signs that I have unwittingly passed on this disease to him. I harbor a fear of living on my own. I fear that I won't be able to properly care for my son if I get sick again. I worry about the medications that I know are in my future. My mind sometimes swarms with cancer statistics of Crohn's Disease patients.

 But I'm here, I can walk, talk, play, drive, and live my life.

Two days ago I found myself in the emergency room with abdominal pain, diarrhea and nausea. I'm not gonna lie, things like that really terrify me. I could have a blockage, infection, flare up... Who knows. This is my reality now. 

I'm so grateful to have lived. 

Me and Mancub 9/5/13 Today is a Good Day.

Things have happened this past year that make me proud. Proud to be a mom, sister, daughter. It hasn't been perfect. Recovery is a long process and I'm not 100% yet. 

My life will be forever changed. And That's Okay. I have a chance to live. To learn new things To educate others on this disease and condition. I can make new friends who I otherwise would never have met, simply because we share this lifestyle now. 

 I'm looking forward to all the years and stomaversaries ahead.