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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.

Guest Post: Justin Berkman Goes Abroad

Justin in Egypt
Justin in Egypt

Traveling with a J-Pouch can be nerve-racking and a tad more difficult than it is for healthy-coloned folks, but from my personal experience, J-Pouch travel is infinitely easier and more pleasurable than traveling with active ulcerative colitis. I would compare traveling with UC to getting a colonoscopy with absolutely no pain medication or anesthetics while traveling with a J-Pouch is like getting a routine pouchoscopy.

As a comedian, I spend a great deal of time on the road. My last UC flare began in the spring of 2008 and continued until I underwent my first surgery in December of 2010. Even though I feel incredibly grateful that people pay me to tell jokes, my “business” trips were not that fun during those two and a half years. Often, to get to my gigs, I have to take two flights, then rent a car, and then drive two to four hours to reach my destination. Doing these marathon trips while experiencing intense stomach pain and defecating 30 times per day was pretty brutal. There would be times when, after the plane landed, I had to push old women aside as I made a mad dash to the nearest toilet. There were tons of uncomfortable and worrisome moments, but a few will always stick out in my mind.

I’ll never forget the time I was driving from Albany, NY to Canton, NY, when I was in the middle of nowhere and I knew that I only had minutes (if that) to reach a restroom. I’m sweating, clenching every muscle I could possibly clench, and envisioning the worst-case scenario. Thankfully, I spot a gas station, do that uncomfortable walk/run while attempting to keep my butthole closed and just make it to the facilities, barely avoiding having to get the rental car detailed. I know I’ll never make a more satisfying trip to a gas station bathroom. Then, there was the time when I was driving from Milwaukee, WI to LaCrosse, WI and faced a very similar situation. On this occasion, I found myself running through a fancy hotel, hoping to make it to a toilet before I soiled the marble floors of the hotel lobby. I think many of you know that having UC involves a series of close calls and unfortunate mishaps.

A few months ago, I was asked to go on an overseas tour of the Middle East to entertain the troops during the holidays. I would be going to Lebanon, Jordan, Turkey, and Egypt. I immediately accepted and was excited about the opportunity. Since my J-Pouch surgeries, I have resumed my frequent travel schedule and I haven’t had any real problems while traveling. However, all my trips had been domestic and I was aware that I had to take extra precautions with international travel. I would be going to places where the food and water have wrecked the stomachs of people without my issues, and I would be visiting countries where there probably wouldn’t be a surgeon or doctor around who knew anything about J-Pouches.

I returned from my twelve day trip on Friday, and I’m happy to report that I’m doing just fine. I made sure to pack everything that could help me if any J-Pouch related issues arose. I brought Lomotil, Immodium, Cipro, Protonix, and my butt-burn ointment. Because I performed at the American embassy in Lebanon and on military bases in Jordan, Turkey, and Egypt, I had American medical personnel available if I ran into any issues. Also, the military has evacuation plans in place if you run into a serious medical problem so that they can get you to a hospital that can provide adequate care. I avoided drinking the water and tried to only eat foods that I thought were safe.

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Making the locals angry!

My trip wasn’t completely problem-free. I experienced some stomach pain that was alleviated after I popped a Protonix and got some serious butt-burn. However, I was more than willing to experience some butt-burn in exchange for such a remarkable, fun, and fulfilling trip. I was able to snorkel in the Red Sea, visit the place where Jesus was baptized, do some karaoke with Russian tourists in Egypt, and joke around with a two-star general from New Zealand. More importantly, I was able to meet and entertain hundreds of troops who were incredibly appreciative to be able to see some comedy while they were away from their friends and families over the holidays. So, even though I became a little worried when the troops stationed in Sharm Al Sheikh, Egypt told me that the food they ate there had given them what came to be known as the “Sharm Shits”, I was confident that the “UC Shits” were much worse and I’d survive if I was to be afflicted with this unfortunate ailment.

If any of you are contemplating any sort of trip or excursion, but are concerned about traveling with a J-Pouch, I strongly encourage you to go on your adventure. Although I still worked as a touring comedian while I had active UC, ulcerative colitis robbed me of so much and kept me at home and in pain way too often. Now that I have a J-Pouch, I am unwilling to let my health situation deter me from living the life I desire (I try to avoid doing anything too stupid, though). I feel like I’ve been given a new opportunity and another chance to truly live. I want to make sure that I take full advantage.

Check out what Justin has wrote for BPT in the past.

 

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.

Just Scopin'

This?

Or this?

https://i0.wp.com/herewomentalk.com/wp-content/uploads/2012/07/stethoscope.jpg

Ok how about this?

 

Wouldn’t it be great if when someone said, “I’m going for a scope tomorrow”, it meant they were getting a sweet telescope. That they were going to spend their day anticipating the next starry night, instead of drinking clear liquids and shoving enemas up their butthole?

I’ve been due for a scope since June 6th, which was my year post take-down assiversary. I however, promptly celebrated by eating cake and did not have a scope. July…no scope. August…no scope. September…no scope. You see where I’m going with this.

“The time has come”, the walrus said. I’m pretty sure walruses don’t have to get scopes, so he wasn’t talking about a camera up his big ol’ walrus butt.

I’m being a cry baby. I know I should go get my check up, and that I should waltz on in there and be all “Ok here’s my ass, shove a camera up there”.

BUT I DON’T WANNA.

I have successfully gone almost a year without getting ANYTHING shoved up my ass. That’s like a freaking Guinness book world record for IBD patients. A whole year without any fingers, tubes, camera, pills, NOTHING.

And now..my “winning” streak is ending. In our world…a year with no butt intrusion is winning. Take that Charlie Sheen.

So tomorrow, I shall do my stupid scope. Awake.

I KNOW. I vowed to NEVER ever do that again, but this is a pouchoscopy, which means its short and sweet…or so they tell me. And as much as I’d love to get knocked out an anesthetized tomorrow…in lieu of taking the whole day off, and making someone else take a whole day off to cart my doped up ass around, I’m putting on my big girl pants (well actually I’ll be taking them off), and going to go do this stupid thing awake.

Also…its not until 2:45pm. Also…I have to work the morning before.

So I will not be taking the recommended 2 enemas before hand. Why? Because I have a jpouch damn it. It’s practically a build in enema…nothing stays in there more than a few hours anyway. AND…because I’m a rule breaker. I do what I want.

Tonight I had my “go to” clean out meal…a double cheese burger meal, and I’m sure in a few hours I’ll be all kinds of cleaned out.

Secretly though I’m kind of hoping that while I’m sitting there on the table, staring horrified at my own ass as the camera gets closer and closer, that when the scope is all up there doing its thing, perhaps we’ll find the Hamburgler stuck up my ass.

I’m pretty sure that would complete my life.

 

 

 

 

 

 

 

Holy crap. Holy Crap. Holy Crap.

Well its official. I bit the bullet. Holy crap.

I joined Team Challenge

I’m only mildly freaking out. Mostly I’m super pumped. During the info meeting there was a video that was shown and I got all emotional because that’s what I do. But I am so excited to do this. I am terrified of raising $3,700! Holy shit balls!

Also…I am not asking you all to donate to me. I try my best not to ask sick people to donate to sick people. Seems unfair. But I’m also not going to turn down your money. So I’m posting the link to my fundraising page here. I will not be posting this frequently because that’s annoying. I hope that perhaps I can work out a fundraiser for you guys where you get something out of it too. Suggestions?! Until then…thanks for being loyal readers. And thank you in advance for all the support I know you’ll give me as I blog about how hard training is!

Donate here: http://www.active.com/donate/MichLV12/JackieZ

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.

Still talking about running…

Last night I did not have a good run. Rewind.

Last night I stopped over at my Grandparents house for a quick visit and I was like “Hey Grandpa, did you hear I ran a 1oK?” My Grandpa is in crazy good shape for being such an old dude. Hes in his 80’s and walks everywhere, eats right, and shovels my snow in the winter. He could give any 25 yr old a run for their money, I swear.

This is the same Grandpa who when I was younger, would comment on my weight and what I was eating… So when I prompted him with the 10K I totally thought he would be all “Yea I did. You’re so amazing, favorite granddaughter of mine”. Instead, he said “I was surprised your body could do it”.

Hmm.

So without pushing the topic anymore, I wondered, did he say that as a compliment, or an underhanded comment. I’m not sure. I decided to go with compliment.

Anyway, so I went for a run last night because I had the itch to go. That “I want to/need to run” feeling is new for me, and its kinda cool. It feels like its going to set you up for awesomeness. I was wrong.

Last night at 8:30 it was 88 degrees. I wanted to try to do about 4.5K which is what I did in similar conditions the other day. Well I screwed myself because I started out too fast. I was trying to measure/time something and I screwed myself up. So then I was frustrated and stopped to stretch a bit. Then I got cornered in a conversation about epilepsy and diet by some strange guy on the sidewalk. Well it was more of him talking at me, than a conversation.

So anyway I was frustration and kept going. I couldn’t find my pace. It was hot.

After what felt like a good distance, I turned on the home stretch to get home…and finally found my pace. Damn it. Instead of pushing it, I ran until I got home and just stopped. Once I found that pace, it felt good, but I knew if I lost it again I would have just gotten frustrated. To make it worse, when I got home, I realized I had only really run just over 2 miles. So I was disappointed.

Then I thought about what my Grandpa said. My body has been to hell and back. It was hot as hell outside. And I still ran 2 miles. Not to mention that MS is SERIOUSLY affected by the heat. There are organizations that give out cooling vests to MS patients because our brains just short out in the heat basically. I do this sometimes. If I’m out in the sun all day I just get to the point where I can really think straight or make decisions about anything. I also get crazy tired. When I first started working out, my body temperature was a serious problem, because it would get so high that I couldn’t really perform tasks correctly. So yea heat and MS = a problem.

It is almost as if the universe is working against me and my fitness goals. But you know what? Eff the universe. I’m gonna run a 1/2 marathon in December. At least that’s what I’m going to plan for. Diseased body or not, I’m going to try to do that. And you know what? I think I’m going to succeed.

So you know what Grandpa? I’m surprised my body can do this too. But it can. And so I will.

And on that note, Kayla here is my current playlist. I didn’t put the songs in this specific order for any reason, its just how they got added.

Bad Romance – Lady Gaga
Ocean Avenue – Yellow Card
Harder To breathe – Maroon 5
This Love – Maroon 5
Life of a Sales man – Yellow Card
ET – Kay Perry/Kanye
Comeback Kid – Sleigh Bells
Fighter – Christina Aguilera
Independent – Lil Boosie
Bulls on Parade – Rage Against the Machine
Go your own way – Fleetwood Mac
Way Away – Yellow Card
Breathing – Yellow Card
Dance With Me – 112
TwentyThree- Yellow Card
Pressing on- Reliant K
Fixed At Zero – Versamerge
Miles Apart – Yellow Card
Who I am hates who I’ve been – Reliant K
Let me see your hips swing – Savage

Post for The Gutsy Generation

I have been asked many times why I am an advocate or why I spend my free time and money on raising awareness for IBD. I have a long winded, drawn out answer for this question and depending on my audience it can be really inspiring and technical, or loaded with swear words and jokes. I like to think that I understand my audiences. I have this same strategy when people ask me what a Jpouch is. I have loaded responses ready to be verbally vomited into the ear canal of the unsuspecting question asker. Depending who asks, they will either get my medical jargon-ed response, or something about how my colon is gone, yadda yadda, new internal plumbing, yadda yadda, wham bam poop chute answer. I’m really quite eloquent with words.

Read the rest of this post at The Gutsy Generation!!

Guest Post: FAP Explained

Something that I don’t know enough about is FAP. So many IBDers and people with FAP cross paths due to ostomies, but I never actually learned about FAP. So….here is some info on FAP.


Currently looking for someone to do a guest post on their experiences with FAP.

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