What's left behind..

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

35 and so, so wise from new lessons.

Hello internet friends....
It has been some time. I have had a lot going on and really have had nothing I felt would be slightly entertaining.
I turned 35 the other day. I have stopped counting. I will be 35 next year too. I have found my first grey hair. The fine lines around my eyes are more prominent than ever, despite my religious use of creams and potions and ALWAYS wearing sunglasses so I don't squint. I also wear them because I feel very incognito. You know- I have to throw off the paparazzi that stalk me. ;-)
I don't really like getting older. Well, I don't mind the number changing, but I'm not ready to be old. I'm not ready for anti-aging creams and fine lines. I'm only 25, 30, 35.... And boom, there they are. It doesn't help that I feel like I have lost a few years to UC. I lost my early 30s. To me those are prim years. You are not 'just' in your 20s to those older than you who still see you as a child no matter how much you've accomplished. And you are still far enough from 40 to still be a little stupid, a little crazy and not have people look at you like you don't have your life together because you are 40. You are close to your 20-something body. Your 20-something skin. Instead of having all that wonderful stuff, I had horrible skin and weight gain from prednisone. Moon face, hair falling out in clumps, arthritis, blood transfusions, 10 pills a day and a dozen or so other side effects from the many different meds I was on to try to get this shit (shitting?) under control. Perfect prime real estate of life in the toilet. Down the toilet. In more ways than one.
I know there are people older than me who will say I'm ONLY 35...I know, I know.... but in this moment I want those years back. I can't count how many times I told my daughter 'No' because I was in too much pain, or too much fatigue to play with her. Or that I couldn't go to the park because I was in the freaking bathroom AGAIN, 30 times a day. Up to 45 minutes at a time. In pain. Crying. I remember moments so bad I thought I was dying. I had told my Hubs, I think I'm dying. Begging, crying, wishing it would stop. And my little girl was so disappointed. Every time. Now she wants to know if she'll need her large intestine out. I tell her I hope not. I don't want to just say no and make a false promise. She's 7 now and recalls me always being sick. Missing me when I was in the hospital all those times. Remembering I was always too tired to play. I can't erase that. That bothers me. I call bullshit. Not for me, but for her. No kid should have to deal with that crap. Here's me and my oldest at dinner the other night. She's happy I can actually go to restaurants now and not watch everyone eat or spend it in the WC(water closet). I am too. ---->

In the last few days I've learned that a delicious filet mignon is not worth it. My body is not friends with red meat anymore. My delicious and expensive Birthday dinner made me extremely nauseous for hours. I hadn't felt like that since before surgery. So, no more red meat for me. Except McDonald's because I'm sure it's not real meat and for whatever reason it's the only fast food that has never made me sick in my life.
I've learned that a real, true best friend is hard to come by. One you have 'take to the grave' shit with, and can still laugh about the stuff you did at 15, when you are 35. Laugh until your stomach hurts about how dumb you were, and then five minutes later discuss something mature, like the dumb stuff you did at 30. ;-)
On the flip, I've learned that when you go through something and feel alone for so long, and then find a group of people who know your pain (online, who you'll probably never meet), you have a bond and a friendship that is truly open and non-judging. I've 'met' such great people on some of the Facebook support pages I've found that have made such a difference. It changed me from feeling isolated in my struggle, to wanting to speak out and inform and educate. That is such a great thing. For all the crap that is out there on the internet, it is so amazing when something positive and life impacting, comes from it.
Oh! I took a new 'hidden ostomy' picture from my night out on my Birthday.

 No one would ever think... and I wear whatever I want. As we've seen in my "I have no shame" pictures.
I have also learned that it is possible to have new, wonderful people come into your life in your 30s. Moving was difficult because it is hard to develop new, trusting friendships as you get older, especially because most of the time I have spent in Texas I have been sick. Luckily, my daughter was in Kinder with an awesome little girl who became her friend, and the extension of that is I am lucky to count her mom, Samara, as a friend now. Her kids are pretty fantastic too.

While I was changing my wafer yesterday I had a thought. I was looking at my abdomen and it occurred to me that I don't even notice the stoma anymore. It doesn't jump out at me anymore. It's just there. And then I realized in 2 weeks, I would be having my reversal and my body as I had gotten used to, would change again. It will be less gutting, more putting back together. FrankenBelly getting reworked. So I took a picture. Truly, in days the stoma will be gone. And I got a little sad. I went from being horrified to being sad in a few months???!! What? It's true. My stoma is generally easy. Yes, it can be a pain in the ass (not really, because that is physically impossible) but it's easy. It's smelly when I change the bag (like, whoa) but I have gotten use to the ease of it, and the never needing to poop part of it. That, my friends, is absolute heaven after years of dying a little 30 times a day.
Anyway, I got sad because now I have to get used to something else. Another recovery, another adjustment. Possible J pouch issues, and yes, possible pooping issues.
I will fight through it though... because at this point in life I am used to things most people can't imagine. I'm used to unbearable pain. Uncomfortable tests on modesty erasing body parts. I'm USED to it. No one should ever have to get used to it. My dad was complaining about his ONCE EVERY TEN YEAR Colonoscopy. Yeah- I couldn't even say welcome to my world because I'm pretty sure at one point I had 3 in less than a year. Once every ten!? Perfect!!
So, here's my pic of the abdomen I was worried about hating and then hating and now loving----->

I love my scar. I'm going to love my stoma scar too. I'm winning the war, not just the battle. It was a losing battle until my colectomy. The second my colon came out, I won. Life has been crazy. I think this coming year will be the best I've seen in a very long time. Looking forward to some good stuff. Two weeks from today is my reversal. Let's hope it goes without a hitch. So weird. I'm only going to have a stoma two more weeks. Funny how we adapt and things that seemed so overwhelming and dramatic become normal. I have a stoma. It's normal. Wow- I'm so enlightened now that I'm 35. =)

Thanks for reading.
Gutsy is off to bed.
XO

Hello internet friends....
It has been some time. I have had a lot going on and really have had nothing I felt would be slightly entertaining.
I turned 35 the other day. I have stopped counting. I will be 35 next year too. I have found my first grey hair. The fine lines around my eyes are more prominent than ever, despite my religious use of creams and potions and ALWAYS wearing sunglasses so I don't squint. I also wear them because I feel very incognito. You know- I have to throw off the paparazzi that stalk me. ;-)
I don't really like getting older. Well, I don't mind the number changing, but I'm not ready to be old. I'm not ready for anti-aging creams and fine lines. I'm only 25, 30, 35.... And boom, there they are. It doesn't help that I feel like I have lost a few years to UC. I lost my early 30s. To me those are prim years. You are not 'just' in your 20s to those older than you who still see you as a child no matter how much you've accomplished. And you are still far enough from 40 to still be a little stupid, a little crazy and not have people look at you like you don't have your life together because you are 40. You are close to your 20-something body. Your 20-something skin. Instead of having all that wonderful stuff, I had horrible skin and weight gain from prednisone. Moon face, hair falling out in clumps, arthritis, blood transfusions, 10 pills a day and a dozen or so other side effects from the many different meds I was on to try to get this shit (shitting?) under control. Perfect prime real estate of life in the toilet. Down the toilet. In more ways than one.
I know there are people older than me who will say I'm ONLY 35...I know, I know.... but in this moment I want those years back. I can't count how many times I told my daughter 'No' because I was in too much pain, or too much fatigue to play with her. Or that I couldn't go to the park because I was in the freaking bathroom AGAIN, 30 times a day. Up to 45 minutes at a time. In pain. Crying. I remember moments so bad I thought I was dying. I had told my Hubs, I think I'm dying. Begging, crying, wishing it would stop. And my little girl was so disappointed. Every time. Now she wants to know if she'll need her large intestine out. I tell her I hope not. I don't want to just say no and make a false promise. She's 7 now and recalls me always being sick. Missing me when I was in the hospital all those times. Remembering I was always too tired to play. I can't erase that. That bothers me. I call bullshit. Not for me, but for her. No kid should have to deal with that crap. Here's me and my oldest at dinner the other night. She's happy I can actually go to restaurants now and not watch everyone eat or spend it in the WC(water closet). I am too. ---->

In the last few days I've learned that a delicious filet mignon is not worth it. My body is not friends with red meat anymore. My delicious and expensive Birthday dinner made me extremely nauseous for hours. I hadn't felt like that since before surgery. So, no more red meat for me. Except McDonald's because I'm sure it's not real meat and for whatever reason it's the only fast food that has never made me sick in my life.
I've learned that a real, true best friend is hard to come by. One you have 'take to the grave' shit with, and can still laugh about the stuff you did at 15, when you are 35. Laugh until your stomach hurts about how dumb you were, and then five minutes later discuss something mature, like the dumb stuff you did at 30. ;-)
On the flip, I've learned that when you go through something and feel alone for so long, and then find a group of people who know your pain (online, who you'll probably never meet), you have a bond and a friendship that is truly open and non-judging. I've 'met' such great people on some of the Facebook support pages I've found that have made such a difference. It changed me from feeling isolated in my struggle, to wanting to speak out and inform and educate. That is such a great thing. For all the crap that is out there on the internet, it is so amazing when something positive and life impacting, comes from it.
Oh! I took a new 'hidden ostomy' picture from my night out on my Birthday.

 No one would ever think... and I wear whatever I want. As we've seen in my "I have no shame" pictures.
I have also learned that it is possible to have new, wonderful people come into your life in your 30s. Moving was difficult because it is hard to develop new, trusting friendships as you get older, especially because most of the time I have spent in Texas I have been sick. Luckily, my daughter was in Kinder with an awesome little girl who became her friend, and the extension of that is I am lucky to count her mom, Samara, as a friend now. Her kids are pretty fantastic too.

While I was changing my wafer yesterday I had a thought. I was looking at my abdomen and it occurred to me that I don't even notice the stoma anymore. It doesn't jump out at me anymore. It's just there. And then I realized in 2 weeks, I would be having my reversal and my body as I had gotten used to, would change again. It will be less gutting, more putting back together. FrankenBelly getting reworked. So I took a picture. Truly, in days the stoma will be gone. And I got a little sad. I went from being horrified to being sad in a few months???!! What? It's true. My stoma is generally easy. Yes, it can be a pain in the ass (not really, because that is physically impossible) but it's easy. It's smelly when I change the bag (like, whoa) but I have gotten use to the ease of it, and the never needing to poop part of it. That, my friends, is absolute heaven after years of dying a little 30 times a day.
Anyway, I got sad because now I have to get used to something else. Another recovery, another adjustment. Possible J pouch issues, and yes, possible pooping issues.
I will fight through it though... because at this point in life I am used to things most people can't imagine. I'm used to unbearable pain. Uncomfortable tests on modesty erasing body parts. I'm USED to it. No one should ever have to get used to it. My dad was complaining about his ONCE EVERY TEN YEAR Colonoscopy. Yeah- I couldn't even say welcome to my world because I'm pretty sure at one point I had 3 in less than a year. Once every ten!? Perfect!!
So, here's my pic of the abdomen I was worried about hating and then hating and now loving----->

I love my scar. I'm going to love my stoma scar too. I'm winning the war, not just the battle. It was a losing battle until my colectomy. The second my colon came out, I won. Life has been crazy. I think this coming year will be the best I've seen in a very long time. Looking forward to some good stuff. Two weeks from today is my reversal. Let's hope it goes without a hitch. So weird. I'm only going to have a stoma two more weeks. Funny how we adapt and things that seemed so overwhelming and dramatic become normal. I have a stoma. It's normal. Wow- I'm so enlightened now that I'm 35. =)

Thanks for reading.
Gutsy is off to bed.
XO