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Hiking Big Bend National Park, New Years 2013

Hey Friends. I have been pretty MIA lately due to a busy life, a growing non-profit and an active social life. All of which wouldn’t be possible with my awesome jpouch. I put it to the ultimate test a few weeks ago though when I went on a 3 day, 4 night hiking trip at Big Bend National Park in Texas.

Continue reading “Hiking Big Bend National Park, New Years 2013”

More Adventures in Dating – Guest Post

RedGlassHeartIMI’ve been following Jackie’s blog for awhile now and after her recent post about dating with jpouch and the negative comments she received after it went live, I felt the need to step in and give my perspective on dating as a permanent ostomate.

From what I’ve seen and heard, many ostomates, male and female, are concerned about how others perceive them. We worry that our appliance can be detected under our clothes or that if people see our bags, say if we wear a swimsuit or something similar, then we’ll be labeled as “abnormal” or “gross.”  For those of us who are single and interested in dating, we have additional concerns: Will we be seen as unattractive? Will a prospective partner not want to have sex with us? Will dates be freaked out?

Speaking from my own experience, I have never once (that’s right, not a single time!) had a date or sexual partner react negatively to my ostomy. One guy knew I had one because of our mutual friend. When we became intimate, I asked him, “so you really don’t care that I have an ostomy?” and he responded, “why the hell would I care about that? You’re beautiful.” Another guy I met online and after a few dates I told him about my ostomy. His two questions? Would sex hurt my ostomy and did my vag still work. When telling another partner, he just held my hands and said “an ostomy isn’t who you are, it’s just a small part of you, and regardless, I want to know all of you.”

Maybe my experience is abnormal, I’m not sure. But I do know this: when I tell or talk to people about my ostomy, I come across with confidence. I don’t make a big deal out of it, mainly because I don’t see it as a big deal. Aside from the three people mentioned above, I’ve been on multiple dates with others whom I did not become sexually involved with, but who certainly tried their best to get in my pants – all the while knowing I have an ostomy.

I don’t know how other single ostomates tell dates or partners about their ostomy, but I like to keep my approach simple. Once I find an appropriate and casual segue into the conversation, I say something like this: “So I got really sick a few years back, have had some surgeries to make me better, and one of them saved my life. The result of that one is that I now have an ostomy. I don’t think it’s a big deal and neither should you, as it really doesn’t affect anything.” Most of the time my date won’t know what an ostomy is, so I tell them very briefly and will sometimes show it to them so that they can see what a small part of me it is. The typical response? “Is that it?” or “That’s all it is?”

I’m not trying to downplay the negative experiences of other ostomates in the dating world as I’ve heard stories of dates reacting poorly, but I do have to wonder how the topic is being talked about or explained and whether the ostomate is coming across as confident or insecure. Perhaps a few readers can chime in and detail their dating adventures instead of just attacking Jackie for not understanding the permanent ostomate’s experience since she has a j pouch? I’d be interested in understanding what other ostomates are going through….

My adventures in dating

So I’m dating. Well, I started dating. Let me rewind.

Dating is a HUGE topic in our community because there is a lot of fear around disclosure and acceptance. In the past I’ve written about dating and my opinions, but I have never actually dated since I was diagnosed with IBD. So all of my theories and advice were pure speculation, even though I still consider it solid advice.

So now I have legit experience in the dating-sphere, and I’d like to share it with you guys. I approached dating cautiously, after all the world is full of crazies. I haven’t actually dated…ever. I was in two very serious relationships for the last 13 years so not only is dating with IBD/jpouch scary, dating in general scared the literal shit out of me. I realize that I tend to talk about my butt to anyone and everyone who will listen, but I also realize that is not great first date conversation. Or at least that’s what I’ve read in forums and other blogs. Hell, I think that’s the advice that I gave in the past.

Here is what I realized…I can’t not talk about my butt. First dates, and even the predating period, it took me a matter of days, if not hours to spill the details on my defunct digestive system. I literally can not stop talking about my butt, and my blog and Girls With Guts. If this was the test, I failed with flying colors. Even if I wanted to hide my history,  if just for a few dates, I can’t. My name and face is plastered all of the internet with “butt disease” slapped right next to it. I have positioned myself in a place where my future beau can read details about how I poop, see my fat face pictures, and view graphic photos of my body when it was at its worst. This is my life, there is no hiding it, there is no going back. I get that is scary for potential suitors, but whelp, this is me.

But you know what…not one of the guys I was talking with cared. In fact, many of them talked with me about their own health ailments and it made me realize a few things about the world. First, that many of us are all giant health disasters, and also that people like and fall in love with the person, not their medical records. I’m sure there are people out there who might run screaming from me on a first date, but frankly, I never found that guy. Not once.

In fact, I found the opposite. I have found someone who cares about me because of what I’ve done with the hand I was dealt. Someone who understands and can relate. Someone who I think is really great, and who thinks that the sun shines out of my ass. Actually, I’m going to ask him to guest post so he can tell you himself what he thought when he met me, learned about my butt disease, and MS and why he didn’t run screaming.

So don’t let IBD scare you away from dating. There a million reasons why someone can like you, or not like you, and frankly IBD is probably not one of them.

The Plan To Not Plan

100111 - planning to over planning

I am a planner. Always have been. For most things, my plans have plans and that helps me from worrying and freaking out. I predict all possible outcomes and then plan out what path I’ll take depending on the outcome. I’m a little neurotic about planning, just ask Charis.

However today I realized something.

I don’t plan long-term anymore.

When I got sick I totally lost all my planning power and since I’m so neurotic that was a huge struggle for me. But slowly over time I learned how to just let things happen because I couldn’t control anything or plan for outcomes. Today I was having a chat with my future brother-in-law and he was asking me all sorts of questions about where I see myself in 5, 10, 35 years. And I was honestly like, I don’t know…alive? He was asking me about jobs and where I’d like to be versus where I am, and what I pictured way down the line and I just didn’t have any normal kind of answer. I realized that being sick changed that about me.  I’m still totally neurotic about things that I can control and that are happening right now, but anything further than this year is an open book.

Here is what I know:

I want to be happy and healthy and have a job.

There you go. Future planned.  I know what kind of job I want (and have), but I don’t know if I’ll always have it or want to do it. I could get sick again and lose my job again, or lose the motor skills it takes to do that job.  He asked me if I planned on staying in my house for the forseeable future and I just thought…I hope so. I could lose my house, which I love.  He asked me if I was 100% sure I don’t want a family. I learned the hard way that you can never be 100% sure about anything. I don’t plan for kids, I don’t particularly want them but life changes. People change.

It dawned on me that most people have some kind of plan for their extended future. Granted many people out there are just happily floating through life, but the average joe has a plan for the next 10 or 15 years that includes more than be alive and make money.

Is this a chronic illness thing? Or is this a weird Jackie thing? Sometimes I feel like a lost 22 yr old, and other times I just feel like a calm collected adult that has learned to roll with the punches.

I think some of this stems from the generational changes from my parents to me. In my parents generation, you got a job, got married, had babies. You stayed in that house until you could afford a bigger better one, and you stayed at your job for as long as possible because there was a loyalty to your employer and it was rewarded. People didn’t switch jobs the way they do now. Picking a career was “final” and now its more like “what I feel like doing for the next 3 years”. My house is small and old but I love it. One day I’ll make enough money to move out of it, but I don’t think I will. And well, you all know how I feel about babies. “Settling down” isn’t really on my radar because it’s not like I’m particularly wild anyway. Actually last Friday night was full of insanity as I sat alone on my couch watching documentaries and crocheting. True Story.

Perhaps its just that I’m not worried about my future, because I’ve learned its exhausting worrying about the unknown. Or perhaps I’m just up for the adventure that accompanies a life unplanned. I don’t know and I’m ok with not knowing.

Eatin' Paleo

Totally realistic image of a cavewoman
Totally realistic image of a cavewoman

I made the choice about 2 weeks ago to switch to a Paleo diet. Since diet is such a common topic among my Butt Buddies I figured I’d let you in on what I’ve been doing. So here are the basics.

What is Paleo?

Paleo is also known as the “caveman” diet which basically means you only eat things that cavemen could have eaten in their time. Seem rudimentary doesn’t it? Trust me there is no pointing and grunting involved and if you’ve ever tried eating Gluten Free its very similar.

Here are the very very basic cliffsnotes:

Good:

Meat

Nuts

Veggies

Fruits

As organic as you can get. All those hippie terms are now your BFF.

Things that are organic, locally grown, grass-fed, free range, no GMO, ect.

Bad:

Dairy (except eggs)

Grains (ALL grains)

Legumes (peanuts, and chickpeas, ect)

Sugar

Fried food/fast food

Processed foods

OR you can use this fancy info graphic to help you make your choices. (Click to view larger)

 

Paleo-Infographic

So that’s it pretty much. Now go and stuff your face with meats and veggies. Well initially this sounds awful and quite frankly scary from an IBD standpoint. The basic theory on the Paleo diet (or lifestyle I prefer to use, because “diet” insinuates that its temporary), is that when cavemen were bee boppin’ around, humans didn’t discover agriculture yet, and because of that we didn’t eat grains. Actually grains are pretty difficult for out bodies to digest, those of you who are GF already know this. And grains are one of the more processed things that we eat daily, and things we are lead to believe are “good” for us. The reality is a single piece of bread is very processed, and most grains honestly do not hold much nutritional value. Sure there is the whole grain argument, but I’m not here to argue, I’m just explaining Paleo.

Why can’t I eat peanuts?

You are free to eat nuts, as long as they are not processed. So that means no roasted nuts, unless you’re fancy and roast them yourself. That means no salted cocktail nuts. That means no peanut butter. Wait…why not peanuts? Because peanuts are Legumes, not nuts silly.

Why not dairy?

Again, cave folk didn’t use dairy products. Hence neither do Paleo lifestyle people.

Ok so what CAN I eat?

You can eat as much meat and veggies as you want. Some fruit but be careful because it has a lot of natural sugar. You can eat eggs, and I eat a lot of them. They key is eating the cleanest food you can. The real complaint about Paleo is the money. Grass fed beef and free range chicken are pricey. Organic fruits and veggies are expensive. But I had this epiphany the other day where I realized that I’m willing spend a boat load of money on fun, and material things (I use the term “boatload” loosely), but not on what I feed myself. What the hell is wrong with me?  This is a personal choice, but after what my body did, and the great comeback it made, I’ve chosen to reward it with eating the cleanest food I can find, even if it costs me a damn fortune. My body has 1,000 reasons to fail and crumble, and I won’t let the food I eat be one of them. Also baked goods and deserts are not out. You can use almond flour, or coconut flower for a lot of baking needs. Frankly I cook a lot more, and I have eaten some delicious stuff.

How the hell am I supposed to eat so many veggies? I have a butt disease.

This is going to be the deal breaker for a lot of people. I can already notice that with my increase in vegetable intake that my bowel movements are different. Many are thicker, which makes pooping a little more difficult, but frankly has slowed down my system enough and its kind of nice. And its all about the veggies you can eat. If you can’t do celery, do freaking eat celery. I roast a lot of them, cook them in a pan, ect. I do not eat most of them raw. When I notice things are not moving as nice as I’d like, I use some apple juice to get things moving. I’m only 2 weeks in, but its going well. I slowly transitioned and that helped my system adjust. I’m still having a hard time breaking up with sugar, and I still crave it a lot but I have found a piece of fruit or a small amount of organic fruit juice helps to quench the craving and then its gone.

So how do you feel?

I think it’s really too early to actually say. I’m still fighting sugar cravings but they are lessening. It could be coincidence but I have slept much better the last few days, and I swear I have more energy. I don’t ever feel like I’m dragging ass anymore. When I wake up in the morning, it never feels like a bus hit me anymore. My stomach and intestine have adjusted quite nicely, and nothing I have eaten has given me any issues. I eat meat, veggies and fruit all day now. I eat nuts a lot too but I make sure to CHEW CHEW CHEW. A single nut at a time until it’s a paste. And I’ve lost 2 lbs.

What else do I need to know?

Are you working out at all? If you’re going to do Paleo you need to be doing some kind of activity, because all the protein you’re stuffing into your body will just sit there and turn to fat if you’re not working it out. If you are, it will help turn it into lean muscle and also to help burn fat.  What I like most about Paleo is that you can customize it to work in your life. If you wanna be crazy Paleo person you can follow the diet exactly and maybe go a little nuts along the way. For me, I do it as best as I can, and know that there are some vices I won’t give up. I like to drink Cider (Angry Orchard, or Strongbow). AO is Gluten Free but its still got a boatload of sugar….every once in a while. I”m ok with that. I lightly salted my roasted veggies with kosher salt. Some people can’t give up cheese. Some people can’t give up diet Coke. Thats fine. The goal is not to make you miserable, its to make your life healthier and if 95% of what you eat is good, clean food its probably an improvement from what you eat now. Frankly, giving up a lot of the grains and things hasn’t been that hard. Sure, I love me some pasta covered in cheese, but I can live without it and it doesn’t make me sad, but you better believe when my Mom makes an apple pie I’m eating it. And then I’m going to the gym. Also when it comes to eating “clean” meats, I have learned it’s not only that they are expensive but they are hard to find. If you can’t find it, or can’t afford it, its ok to buy meat from Kroger. Again the goal is to eat as clean as possible, whatever “possible” means for you.

Also it really works for me because it lets me eat when I want and as much as I want. Its not horrible to skip meals, and it doesn’t mean tiny portions. It means if I don’t eat lunch, fine, who cares. A lot of the food can be pre-made, and frozen, so all you have to do is thaw it and then stuff your face which works well for me. I pre-cook a lot of meals and then I don’t have to worry about “whats for dinner”.

Here is another info graphic with some more info:

The-Ultimate-Guide-to-Eating-Paleo

 

The CCFA Ad Campaign: Ain't No Party Like A Butt Hurt Party

Adco-popupAs usual, I’m about 3 weeks late to this party. I tend to avoid controversy while its happening, and then right when you think its over and everyone has forgotten…BAM. Here I am all, “I have an opinion and I’m sure its going to piss you off”. You all know what I’m talking about, right? The CCFA ad campaign.

I’m not going to be delicate with this one.

I don’t understand what everyone is all butt hurt about. Period. Its as simple as that. Don’t we have anything better to do than bitch about the first ever IBD awareness campaign? This all goes back to my theory and post about Invisible Awareness week. This is marketing….real marketing. Perhaps its just because I am a marketing professional but I understand this campaign. I’ve seen many people say that this trivializes IBD. People asking “Why aren’t they showing what its REALLY like to have IBD?”

Well…here’s why:  Its scary.

If you want any kind of response from the masses you can’t scare them. Think about other large disease awareness campaigns, like Cancer and AIDS. Do they show you people literally dying in hospital beds? No. Why? Because its fucking scary. Commercials for St. Judes, show kids with cancer…in the hospital but happy and smiling. Laughing and hugging cuddly teddy bears. If they showed kids post their chemo treatments, when they are sick and puking their guts out do you think people would be receptive? No.

Do you think the families of those children are upset that the “real” side of cancer isn’t being shown? Hell no. They are happy to get donations to St. Jude to help them care for their children. Lets talk about those commercials that ask you to donate your money to the starving, sick kids in Africa or wherever. They give you a sob story about children that can’t afford food or clothes, and who have no parents or education. They show you sad, adorable children. Do they show you the reality? Children emaciated and literally dying in the streets? Do they show violence over limited food supplies? No. Why? Its scary.

The point of the campaign from the CCFA was to raise awareness. Every ad had the letters “IBD” on it and if nothing else its getting that term to the masses. And quite frankly, everyone pissing and moaning about it, just raised more awareness for IBD because your blog posts, and reposts of those photos just make the terms show up more in Google. Perhaps behind the scenes, they were hoping this campaign would be controversial. Controversy raises conversation, and conversation raises awareness.

Think about this campaign as a first step. It is step one to telling the world about IBD and telling our stories. You can’t scare the world or else they won’t listen, won’t donate, and won’t give a crap. I asked a few people I know who don’t have IBD what they thought about the ads, because everyone keeps saying “People will think that this disease revolves around the bathroom” (News flash: It does). Well the first person I asked, said, and I quote,” I don’t get it, so those people have IBD?”

I think we’re all a little sensitive to the whole “being tied to the toilet” thing, and as a result we think that everyone else must think that IBD is a toilet disease. That’s why I tell my story and why you should too. Talk about it…tell people what its like. Why does it seem like this is one of those “I can make fun of my sister but you can’t” things? In the IBD community we make butt/toilet jokes all the time. We do it because its funny, and because its a coping mechanism. I learned to laugh at this a long time ago…but here’s the thing. The ads don’t make me laugh. They aren’t funny. No one is making fun of us or trivializing anything. Why can we talk about our realities (being stuck in a stall) but no one else can? And if you say because people will just think its the same as IBS then I’ll drop kick you in the face because I have NO Idea how anyone can deduce that from these ads. “IBD” is written all over them, and the info on the bottom gives more info about IBD. I have no clue where the hell IBS comes into this, and I think its just another reason for people to complain about things they can’t control. Was every IBDer consulted on these ads? Nope. Should they have been? Nope. Why? Because you can’t please everyone.

Do you really think that a full account of what IBD is like can be depicted in an 8×10 printed ad? If so, make one. Hell, I’ll fund it and shop it out to ad agencies if you think you can accomplish the following:

  •  A non-threatening or scary account of life with IBD
  • Information/stats/facts about IBD and what it can really do to your body
  • Images depicting IBD in a non-offensive manner and in a way that won’t embarass patients or viewers of the ad
  • Resources for those who have IBD
  • Individual stories about how it affects people differently
  • Information about how IBD can affect your mental state in addition to your physical state
  • A list of all other ways IBD can affect your body
  • Information about PICC lines, TPN, NG tubes, surgery, ostomies, and JP drains
  • A list of all the side effects of the medication

 Gee that sounds like an awful lot, right? This is a list that I complied from those who are complaining about these ads. I’m telling you right now, its impossible. You cannot fit all of that into a single marketing campaign. Since you can’t, does that mean we shouldn’t market IBD at all?

With all due respect…fuck no. I want people to know about my disease. I want them to know its name. I want them to know that it DOES involve a bathroom so when students in a classroom bolt out the door, their teachers don’t punish them. I want people to know that IBD can alter a life. To me…that is a good starting point and these campaign do exactly that.

The NEXT ad campaign perhaps can give more information. Yes…I said the NEXT one because I’m hoping this is the beginning of many campaigns, campaigns that will make IBD a household name and one that will no longer keep us in hiding. So that we can Escape The Stall…whatever your stall may be.

I think that the CCFA took a risk on this campaign and I think it was worth it, and if you don’t like….fund your own damn campaign or find someone to do it pro-bono. Go find your own celebrity with IBD and have them jump on board to be your spokesperson because that is what awareness takes unfortunately.  You have to make your disease sexy. Right now IBD is not a designer disease…but with this campaign it can be. That sounds shitty, right? Well that’s marketing people.

I know many people feel like this campaign depicts our disease in a negative light. Whelp….get over yourself. Period. This campaign is not about you and its not about me. Why? Because it affects us all differently, so one blanket campaign is not going to tell your story or mine. Its a collective voice just telling the world that IBD exists and a lot of different kinds of people live with it.

I’m glad that they took a risk, and put these ads out there. All that I see with these ads is a chance for conversation. A chance to talk about it, share your story, and raise awareness. Whether you like the ads or not, they have done exactly that.

My Ostomy Journey

Today is World Ostomy Day, and it has brought up some interesting emotions and realizations for me. I want to share some things with you. Intimate thoughts, and unflattering pictures.

Pre-op surgery # 1. March 2010

That picture is me before my first surgery. Very sick. Very overweight from steroids. Very scared. Very VERY horrified I’d have to have an ostomy. VERY embarrassed of myself and my life. Ashamed. I wrote about what I had expected my ostomy to be like here. I wrote that I hoped I’d look back with fond memories, and in fact, I do. Having my ostomy taught me humility, but more importantly it taught me to laugh at things I couldn’t control. I remember trying to maintain a positive outlook and I just kept telling myself, ok its just 9 months. Its JUST 9 months. 9 Months. Thats it, just get through it.

But then things started to change. Slowly, I wrote this entry just 4 days after my first surgery, and even here I was writing about how I didn’t like my ostomy, but I already felt better. I remember it felt so foreign on my body. I didn’t want to touch it or hear it, or see it, and if I heard that plastic crinkle it just reminded me of the bag I was now stuck to.

My belly post-op. I was embarrassed to really show my ostomy, so I hid it and didn’t really take pictures.
The one and only photo of my first stoma.

It seemed like it took forever for Surgery #2 to get here. There was 6 months in between surgeries, and a lot happened in those 6 months. I tried to return to work, but just couldn’t seem to get my head in the game. I lost my job and my pending time off didn’t really help my case either. I didn’t know a soul with IBD and I desperately searched the internet for friendly words and advice and the only place I really found to be helpful was Jpouch.net. You see back then, HONESTLY, there were 2 websites about jpouches on the internet. We’ve come a long way since 2010. I found a friend, Brevin, who told me about Camp Oasis and how he’d just volunteered, and I thought well, that sounds cool, I’ll look into it. I contacted my local CCFA and had an interview to be a camp counselor which literally consisted of my crying in our directors office because, for the first time ever, I was in the presence of someone who understood how lonely it was. She was telling me about camp and how the kids who come there feel lonely and isolated and that camp was a safe place for them. And I just lost it because I was desperately searching for something like that in my life. My first year at camp was interesting. At the time I really didn’t see how magical it was or how it had changed me. I even wrote that it wasn’t as good as I thought it would be. I didn’t leave with new best friends. I didn’t really leave any different than I had arrived…or at least I thought. What I didn’t know, and I didn’t see was that camp had changed me and empowered me in ways I never even realized. And I would really need what I learned there when my second surgery came and went and was unsuccessful.  That first year at camp wasn’t about the people that I met, it was about what I learned about myself and that is what I took away.

Surgery #2 was supposed to be my second step and I was supposed to get a loop ileostomy and have my jpouch created and put in place to heal for another 3 months and then I’d be done! That didn’t happen and I was devastated and depressed and yet again alone. At that time, I had you guys. I had this blog and that was really it. I didn’t really connect with my camp friends that first year, and other than my family, I was so devastated. Thats the only word I can think of to describe how defeated I felt. I thought colitis was still winning and I just didn’t know what else I could really do at that time but crawl into a hole and stay there. And  I did. For a long time. But I knew that if I wanted a jpouch someday, I’d have to work for it. Literally, I had 6 months and 40 lbs to lose before my surgeon would even try again. So when I could, I got a personal trainer and started working out. I WOULD have a jpouch. I WOULD get through it. And I did. I worked my ass off literally. I worked out like it was my job and I learned how to work out with an ostomy, and I learned how to talk about having an ostomy and about my life more in person. With real people not just to the internet. I explained my life and my ostomy to my trainer at the time and while I could tell he didn’t really get it, he still encouraged me. He wouldn’t let me say “If I lose the weight”, he would say “When you lose the weight”. He honestly taught me an amazing lesson in positivity. He taught me how to picture what I wanted and that the mental game is more than half the battle. It IS the battle. He is still my trainer today, and has turned into a really good friend. A friend that puts me in headlocks on a weekly basis, isn’t afraid to tell me when I look like shit, and make me work really hard. But a friend that taught me how to believe in myself, and that if I pushed, my body could do it. I could do it. Again, I didn’t know I was learning these things at that time, but I was, and these are skills I still have now.

I wore my “Lucky Lass” shirt to my pre op appointments. I knew I needed some extra luck.

Surgery #3 came around in March 2011. I did it. I lost the weight I needed to lose. I drove my ass back to Cleveland and I walked into Dr. Remzi’s office and I was ready. Let’s do this. I was never more prepared for a surgery in my life. I was mentally strong, and physically stronger than I had been in over 2 years.
The surgery came and went and was flawless. I left Cleveland in a timely fashion and felt like a damned rockstar. Until a day later when my stoma separated. And I have never been more horrified in my life. I had also been fighting that nasty ulcer, and that combined with the separation made me absolutely terrified. Again…I felt defeated. Would ANYTHING work properly? Would I ALWAYS have problems? So back to cleveland I went. Defeated. Frustrated. Angry. Depressed. But this is why I learned that sometimes, you don’t have a choice. You have to keep going, and trying because there is not another option. And as much as it sucks, you pack up everything you JUST unpacked, you call your mom crying, and you ask her to come over help. You learn to ask for help. You let you mom make phone calls for you, and then you have your Dad come pick you both up and drive you 4 hours right back to Cleveland. I think I cried the whole way there because I just couldn’t think of anything else to do. But right there, in that time, I learned how amazing my family was. I mean I knew it before then, but it was moments like this that I knew I’d never be able to do it all without them. I also learned that no matter how old I was, there would still be times that I wanted and needed my parents to come to my rescue and that it was ok to ask for their help and to depend on them because sometimes they wanted to be needed too.

My third stoma. My prednisone scarred stomach. Horrible JP drain.

So after that got taken care of, I went home mentally exhausted, but at the same time I knew that if I just made it until June, I’d have my takedown. I just had to make it 3 more months. And then I had an MS attack that took my vision and all of my optimism. I was told I’d have to push back my surgery…again. And this my friends, is when I lost it. Right there, that was my rock bottom. Physically and mentally overloaded and after years of just pushing through, I caved. Everyone has breaking point and that was mine. I retracted into myself, I stopped answering the phone, going places, eating. Everything. I learned why people choose to die over choosing to keep going. I learned that I had that choice too and it took me a while to choose to keep going. I had tons of support from everyone here, but at that time in my life, I had to choose to live on my own.

And I did.

During all of this I also found a new surgeon because I was having problems with my surgical team at Cleveland. And then…it was June. My takedown was scheduled for June 6th and when June 1st hit I had this mini identity crisis. I was so excited to take the next step in my IBD journey and try out my jpouch that I had worked SO hard to get. But at the same time it was like diving head first into the unknown. It was like my first surgery all over again, I was scared, and nervous, and doubtful that it would even work. I took tons of pictures of me with my ostomy because I wanted to remember myself in that place. Happy. Healthy. Confident. Proud. I wanted to remind myself that if I could feel this way with my ostomy, that I could take on the world with my jpouch.

I never posted some of these pictures, because its one thing to be confident, its another to post half naked pictures of yourself on the internet. But you know what internet, I look back at these and I see progress. I see a body that I worked hard to get, even though it wasn’t perfect. I see scars that are healing nicely. I see that I was starting to build myself back up.

My last picture with my ostomy.
Surgery # 4 was different.

I was so prepared for it. I was so ready and I thought it would be easy peasy but it wasn’t. It was a difficult recovery. But when I woke up in my bed the first thing I did was reach down to feel for my bag. And it wasn’t there. I didn’t feel relief. I wasn’t super happy. I actually mourned the loss of my ostomy a little. For the next few weeks I kept reaching down to touch my bag, or adjust the stool. I had created all these habits from having the ostomy, and I never even realized it. It was almost like a nervous tick, I just did things without even thinking about it, and now…I didn’t have to. It was weird. The other day I was actually thinking about how fast we create habits…and then how quickly we forget those habits. I probably stopped checking my “ostomy” just a few weeks after surgery. At the time, I felt like I’d always be checking for it. So quickly we forget.

Former ostomy site.
I don’t want to ever forget. I remember my ostomy like I remember an old friend. I learned a lot from it even though it caused me stress and frustration. I am thankful I had it, because it saved my life. Having my ostomy introduced me to so many new people, and put me in many new situations that I would have never been in. IBD changed me, but I think having an ostomy molded me. It helped turn me into this person who I think is pretty great. Like I said, my ostomy taught me humility, but it also taught me how to be proud of myself and my accomplishments. I learned about my own personal drive in life, and my passions. My ostomy took me to new places, and I’m not just talking about an OR table, or comedic situations that would make that scene from Bridesmaids look like a disney movie. I’m talking about the places I’ve gone, the people I’ve met, and the places that I went in my own evolution.

Today is World Ostomy Day, and on this day every year, I’ll remember how I got to where I am. I actually kind of wish I had an Ask Me About My Ostomy shirt because I am more than happy to tell anyone about my front butt that saved my life.

Updatin'. The last 10 days.

Man have I been busy.

I feel like I’m so disconnected from you guys. Sad face.

But here is what I’ve been doing, which is some pretty awesome stuff. This is how the last 10 days went.

Fly to Chicago.

Meet up with Lauren, volunteer at their CCFA office. Have a great super awesome time doing puzzles, drinking wine, and watching Dawson’s Creek.

Drive 4 hours to Wapaca, WI with Andrea from GMB for Camp!

Closing ceremony to Oasis WI

Man, I love camp. Every time I’m at camp I wonder why I didn’t think about that as a career choice back in my younger years. Camp makes people better versions of themselves. I do love it. Oasis Wisconsin was very different from Michigan. Not bad different, just different. So many things were different and some of them I prefer. Some of them I’d like to take home and adopt them into our MI camp. Anyway…it was interesting being the new counselor…who wasn’t new. I definitely felt on the outside for a day or so, which reminded me what it was like to be the newbie, and to make sure that I’m always including new people. At the same time it reminded me that its good to be out of your comfort zone, try new things, meet new people. The beauty of it all is that when you’re at Oasis, you know they’re going to be good people. I was lucky to have Andrea and Megan there with me, which helped to soften the entrance to the group. The most obvious thing that I noticed about their camp was that…it didn’t seem like a camp for sick kids or counselors. The kids at this camp were noticeably more healthy than our kids, and same goes for counselors. Granted there were about 80 kids at WI and about 150 at MI, so perhaps that other half is all sickies. I’m not sure. It was very different in that aspect though.

Camp ends…an hour later drive to Appleton Airport. Fly to Minnesota. Then fly to Denver.

Get to Denver, get driven in a murdered out escape to my super boss hotel. Change out of camp clothes into adult clothes. Go meet the people who are at this patient panel, eat dinner, go back to my room…pass the fuck out.

Wake up at 6am…shower for the first time in a day or 2 (but who is counting). Proceed to have an amazing meeting.

There were none of these 😦

I got to Denver and I was all “Is that fog? A building? What the hell is that?”. I also didn’t see a single mountain. I began to think I didn’t land in Denver at all. Whelp, turns out, there are some serious wild fires happening over there, and there is just smoke upon smoke upon smoke. Hence the fog/wall I thought was seeing and why there were no mountains. Boo.

I signed some non-disclosure agreement saying I wouldn’t say what we talked about at this meeting. I probably can’t even say that I was at a meet that I can’t talk about. BUT…a large pharmaceutical company gathered patients together to talk about medications, newly diagnosed patients, and other patient related things. I must say, after this meeting I have a whole new respect for big pharma. I no longer just think it’s a big fat man, who resembles the Monopoly guy, sitting behind a desk playing around in freshly cut $100 bills. They actually are pretty normal looking. None of them wore a tux. Not a single one. I really think that these people want to help patients. They want to understand them, and make sure they are meeting their needs. That was refreshing and also reassuring.

Meeting ends around 5:00pm. Go to my room, order room service. Pass the fuck out.

Wake up at 6:00am. Get picked up…fly to Minnesota….fly home. Get puppies. Sleeeeeeeeeeeep.

After being in 3 time zones, 5 airports, and 5 planes…I am tired. Whooped. Beat. Cashed. D) All of the above.

I havent put this bod through that much ‘stress” in a long time and I am happy to report that she help up pretty well. I’m SUPER tired. I have had shitty sleep and I’m been feeling a little “off” since I got home, but there was a lot of travel and food I couldn’t control in there. Overall…pretty stoke that I had these opportunities and that I was able to take part in them without any limits! Go j-pouch!
I got home, slept for a bit and got back to the grind. Back to work, back to planning my ass off for Girls With Guts. You guys, that is going to turn into something beautiful and I am so excited for when I finally get to disclose everything we are doing! I think you’re going to be pumped too! Also Charis is coming to town next week. Giggle fest to ensue.

Another post about running….

Kayla recently asked me what my training schedule was for these races. So I figured I’d just give some real basics on what I’m doing.

First I want to say I am not a “fit” person. I’m not an athlete. I never ran in high school. I never ran for funsies. I always thought running was for robbers. No seriously, what is the point of running unless its from the cops? So when I tell you what I’ve done/been doing, be forewarned that its not technical. It’s probably not the “right” way, and it doesn’t really make sense and it might not work for you.

So here is a list of things that I did:

1. Set a goal
I had a 5K on my list of things to do before I turn 30. Which is still a few years away. Obviously I thought that I would need AMPLE amount of training because even I didn’t believe that I could get this ass through 3 miles. So the first thing that I did was make a goal and a time frame. Then grab some chips and watch some TV because goal planning is a lot of work. Don’t worry about what shape you’re currently in. Its all about building endurance.

Uhm…I dont look like her. Don’t worry if you don’t either. In fact, screw her for looking good. I like cheeseburgers.

2. Buy good shoes
Anyone who tells you running is a cheap or free sport is full of shit. The act of running is free, but preparing and making sure you’re doing it right is effing expensive. After I set my goal I was told that I needed to get running shoes. I found a running store, not a Nike store or Foot Locker, but a store that specializes in running. Had them fit me for shoes, which means measuring your feet a few ways, and watching you walk. I have stupid feet. They are short and fat and there is only ONE shoe that is the right match for my feet. Had I tried to buy shoes on my own, I would have went with the ones that had the best colors. Let the people who know what they’re doing fit you for shoes. Then spend a billion dollars on shoes because they aren’t cheap.

These are my shoes. Nike Vomero 6

3. Get some gadgets
When I lost my weight in the past I used a FitBit, and now I have the Nike+ Sensor hooked up to my iPhone. I find that gadgets make me excited about stuff. For me, seeing charts/graphs/data is super motivating. I like apps that make running/working out more fun and make me use my brain less. Nike+ has been great for charting my progress/changes and things like that. If I couldn’t actually see how far I was running or how fast, I would have given up a long time ago.

Nike graph from the 10K. I forgot to turn it off which is why its all red and shouty at the end.

4. Find a mentor
See how I haven’t even started running yet, and I’m already on number 4? I’m a planner. I like to plan, so for me the choice to run required planning. And brain picking. I realized I had a ton of friends that are runners, so I started picking their brains. Most of them wont give you concrete times/distances which will piss you off, but whatever they say is true. Time/speed/distance doesn’t matter. Honestly. I’m slow as all get out, but I’m out there doing it. That’s all that matters. A running mentor will be helpful for suggesting goals, and giving you info about gear, or injuries and things like that.

This is Lauren from Forward is a Pace. Many people have helped me a lot, but I ask Lauren running questions probably 50 times a day.

5. Go run
Shockingly the most important part of running…is running. So get out there and run. When I first started I realized that my pace was too fast for me to accomplish anything. I made a playlist that had a slower BPM and I was able to keep a slower pace. The first few times I went, I was experimenting. I didn’t care about time or distance but I wanted to see how it felt to run. How fast I got winded. I paid a lot of attention to how I was breathing and how my posture was. One of the best tips I’ve gotten so far was to keep your shoulders back. That helps a lot. I think I didn’t even do a 1/2 mile the first few times I ran. After that my goal was to do a mile. I tried to do a mile better and fast for a while. I wanted to be comfortable doing a mile. I walked a lot. I still do. I still can’t do a solid mile without stopped for a few seconds. So this is where I started. Also I hate running. So for me, I would only do a mile once a week if I was lucky. Once the mile got a little easier I would make plans to do it more often, and then break those plans all the time. But every once in a while I’d get in 2 miles a week.

6. Sign up for a race
This is one of the most important things I learned. If I didn’t have a reason to get off my ass and run…I wouldn’t. Just the idea of a 5K was absolutely terrifying. So I conned a friend into doing it with me, so we could both look like assholes if that ended up being the case. We never trained together, but it was nice having someone else at that first race. Having signed up and paid for a race really made me want to try harder and get more serious. I didn’t want to walk that race. I didn’t want to give up. I WANTED to be able to do it. Signing up for a race is motivation. Also, you get a shirt.

7. Run when you feel like running
As stated before, I am not an athlete. If the weather is shitty, I’m not running. If my elbow hurts, I’m not running. If I’m having a bad hair day, I’m not running. I found that when I try to force my runs, I don’t do well, I get frustrated and I end up going for like 10 minutes. Its counter productive. I had to have good runs to make me want to run more. Running when it didn’t feel right, made me not want to run. Now that I have had good runs, I actually want to run more. But if you just force yourself, you’ll start to hate it. I’m not hardcore enough to need to train when I’m tired, or its raining or 10000 degrees. I run when I want to, and having scheduled races makes me “want to” more often, so I don’t look like a fool in front of the world.

Learn to be proud of your accomplishments.

8. Push yourself
When you’re having a good day and it feels good…run more. Run faster. Or further. Set goals. Take a walking break for 15 minutes and run again. Its on these days that you’ll realize you CAN do better and go further. The first day I got my Nike+ sensor, I decided to just go for a run to test it. Well the universe aligned correctly that day and I ran/walked my first in neighborhood 5K. It just felt right. It just worked. I haven’t done another 5K in my neighborhood since. But that day, I realized I COULD do a 5K. And after that I realized that I wanted to do one but better.

9. Let yourself have bad days
Sometimes when I’m running, I have really awful days. I can’t catch my breath, my muscles hurt, my playlist sucks. Some days there are just 1,000 reasons not to run. So if I’m out running, I’ll give it as much as I can without getting pissed. That might mean walking a lot longer than I’d like. Or turning around right in that second I’m frustrated and going home. And then I get home and I forget about it. One things I’ve learned from my runner friends is that some days just blow. And I have learned that sometimes after a day that sucks balls, the next day is totally different. One bad day doesn’t mean they all will suck.

10. Run a race
The first race is weird. You show up and have no idea what you’re doing. There are some people who take themselves way to seriously there, and then there are cute old people who are going to walk the whole thing really slowly. Its a HUGE mix of people. My first race, I chose a low key one, close to home with a cheap entrance fee. I found one where I thought I wouldn’t know anyone, so I didn’t have to worry about running into familiar faces. I had my friend with me, and we checked in together. Shared nervous energy and slowly got excited while we were stretching. When the race started we just went. Had no clue what, if any strategy to use. Didn’t even know if runners had race day strategies. We’d never seen the course, never ran a race, and had NO CLUE what we were doing. Which is why it was helpful to have a friend there. The first race didn’t break any records. It wasn’t a high profile race. But when we were done….we did it! And then I knew I could KEEP doing it. Finishing the race made me want to race more. I always thought I’d run a 5K and call it day. But now I want to keep doing them. And now since I’m an accidental 10Ker, I might just keep doing those now. I’ve found that its not the running I like, its having ran. Its crossing the finish line. Its the atmosphere at races. Its looking at my Nike+ graphs and seeing my distance go further, or my time get faster. Its meeting new running friends, and being able to talk about new stuff and learn new stuff. Its buying fancy pants running clothes and having chats about which water bottle pack is best. Running itself still sucks ass, but being a runner is pretty cool.

My shoes with a timing sensor thingy tied to it.

So before the 5K I had intended to run last weekend, I was having a good week. I ran 3 times during the week and was aiming for 3K each time which is about 2 miles. Its not a short distance but its not far. I figured if I could get “comfortable” with 3K, the last bit of the 5K would just be where I would push myself. I don’t run 5Ks every time I run. Sometimes I do just a mile. Sometimes I don’t run for 4 days because I don’t feel like it. I still can’t run a damn 10 minute mile. I’m slow. I walk. But I’m out there doing it. There is a sense of pride is just trying. I think everyone should try to do a single 5K in their life. Its far enough that everyone can’t do it, but its short enough to where you can train to do it in a short period of time.

I started my “training” probably just over a month before the race. I didn’t follow a plan or Couch to 5K. I didn’t consciously try to increase my distance each time. I just ran when I felt like it. Period. This is the system that worked for me.

And now…I’m kinda hooked. I still hate running. But I like races. So I’m looking at a 8K next month. Then the month after that is the mud run, which is the 5K that started this whole thing. I was going to train for that race for a few months…and now here I am…planning a 15K in November…and really considering Team Challenge which is a 1/2 marathon. I can’t stress to you guys enough that I hate running. Its never been my thing. Its hard for me. But this is something I’ve found that I can do, and now more than ever before, I like to do think simply “because I can”. UC took a lot out of me, including my colon, and now I want to run races because I couldn’t before.

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