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.

Pain with a capital P.

I just wanted an easy transition. Not getting it. The surgical pain has been nothing. The intestinal pain on the other hand has been intense. The majority of my small bowel wasn't used for months. Now, it is not happy to be put back to work. I am in pain. I can not describe the internal/maybe rectal? pain that occurs when something starts moving into that area. It paralyzes me for a few moments. So intense I feel like I may have an accident. Then is passes like it never happened. I can only assume that feeling is waste entering the newly formed pouch. I am still trying to figure out how things feel. Having to go #2 feels completely different now that I'm using different body parts to do it. So, trying to discern what is just intestinal pain vs the urge to go has been a challenge this last week. I end up hanging out in the shitter because I don't know if I'm in pain, or if I have to go. So obnoxious.
For those who are unfamiliar with the Jpouch, here's an image of what my insides basically look like now after all the surgeries are done.

I have to keep reminding myself that it generally takes up to a year for the Jpouch and system to adapt and become somewhat normal. I'm only 11 days post OP. Everything is a very slow adjustment process. My small intestine needs to start absorbing more water so my 'output' is more solid. Yeah, there's a nice visual. HOT!!
I'm completely out of my mind thinking I should be able to pick up my crazy life and run with it. It hurts to sit sometimes. 11 days is nothing. I need to snap out of it. I almost look normal, so I want to feel normal. Patience is not my strongest quality. It might not even be a quality I have.
 Here's pic from today of FrankenBelly. It looks so gross.

It's so scabby and itchy and it actually is very uncomfortable. Hopefully my wound care nurse can pop them out tomorrow. They are now to the point where it hurts because my body wants them gone. Ewwww.. and I'm totally a scab picker so you have no idea what kind of will power it is taking for me not to go after this thing. A lot. Tons. It's ridiculous how bad I want to pick at it.
So, I'm plugging away. There's a ton of stuff I want to do to this house that I haven't been able to because I've been sick for 100 years. Slowly putting my ideas to work so right now that is keeping me motivated. All my ideas cost money though, of which I am officially running out of all the cash I had stashed away. Looking at my bank account brings back the thoughts of now what and wondering what the hell I'm good at and where to go from here. So, I'll stop thinking about it for now. It gets me really upset. How am I 35 and feel so lost out of nowhere? Ok- I'm done.
New entryway wall unit soon, new paint for the downstairs bathroom and I plan on painting our island in the kitchen to change things up a bit. Fun stuff. I'll start buying the Lotto tickets anytime. I think Lotto winner sounds like a perfectly acceptable career!
Have a great day everyone.
XO

I just wanted an easy transition. Not getting it. The surgical pain has been nothing. The intestinal pain on the other hand has been intense. The majority of my small bowel wasn't used for months. Now, it is not happy to be put back to work. I am in pain. I can not describe the internal/maybe rectal? pain that occurs when something starts moving into that area. It paralyzes me for a few moments. So intense I feel like I may have an accident. Then is passes like it never happened. I can only assume that feeling is waste entering the newly formed pouch. I am still trying to figure out how things feel. Having to go #2 feels completely different now that I'm using different body parts to do it. So, trying to discern what is just intestinal pain vs the urge to go has been a challenge this last week. I end up hanging out in the shitter because I don't know if I'm in pain, or if I have to go. So obnoxious.
For those who are unfamiliar with the Jpouch, here's an image of what my insides basically look like now after all the surgeries are done.

I have to keep reminding myself that it generally takes up to a year for the Jpouch and system to adapt and become somewhat normal. I'm only 11 days post OP. Everything is a very slow adjustment process. My small intestine needs to start absorbing more water so my 'output' is more solid. Yeah, there's a nice visual. HOT!!
I'm completely out of my mind thinking I should be able to pick up my crazy life and run with it. It hurts to sit sometimes. 11 days is nothing. I need to snap out of it. I almost look normal, so I want to feel normal. Patience is not my strongest quality. It might not even be a quality I have.
 Here's pic from today of FrankenBelly. It looks so gross.

It's so scabby and itchy and it actually is very uncomfortable. Hopefully my wound care nurse can pop them out tomorrow. They are now to the point where it hurts because my body wants them gone. Ewwww.. and I'm totally a scab picker so you have no idea what kind of will power it is taking for me not to go after this thing. A lot. Tons. It's ridiculous how bad I want to pick at it.
So, I'm plugging away. There's a ton of stuff I want to do to this house that I haven't been able to because I've been sick for 100 years. Slowly putting my ideas to work so right now that is keeping me motivated. All my ideas cost money though, of which I am officially running out of all the cash I had stashed away. Looking at my bank account brings back the thoughts of now what and wondering what the hell I'm good at and where to go from here. So, I'll stop thinking about it for now. It gets me really upset. How am I 35 and feel so lost out of nowhere? Ok- I'm done.
New entryway wall unit soon, new paint for the downstairs bathroom and I plan on painting our island in the kitchen to change things up a bit. Fun stuff. I'll start buying the Lotto tickets anytime. I think Lotto winner sounds like a perfectly acceptable career!
Have a great day everyone.
XO