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More Adventures in Dating – Guest Post

The Love Birds
The Love Birds

I met my boyfriend shortly before his first surgery. His illness was pretty epic. He had been sick for maybe ten years with UC when we met. He moved to the UK to change careers and started training as a teacher at the school where I worked. It was not an easy school to work at, even for someone experienced. I’d hate to think how hard it must’ve been on immunosuppressants and steroids and in constant pain. But he managed to do it all and still remain cheerful. The staff and the students all loved him. No one knew how sick he was. Not even his best friend I think. I suppose he had learned to keep it from a lot of people by then, but he was really unwell.

A few months later he was hospitalized with shingles, as the drugs had weakened his immune system. We were friends by then and he tells me now that he’d already fallen for me, but decided he was in no state to contemplate women or relationships due to his health. I knew he had colitis, but I knew bugger all about the disease apart from that it affected the bowel. A few months later he had his bowel removed as a matter of urgency and had complications from his surgery. We kept in touch through our mutual friends and he returned to work after the summer.

We became great friends when he returned to work. Weirdly, his illness was partially responsible for us getting together. UC had nearly killed him, but it made him so grateful and positive about being alive after his first operation, he was so awesome to be around. His love of life was contagious and I loved hanging out with him. I’d never known someone with such a unique perspective. He used to tell me how great it felt to feel the wind and rain on his face after months stuck in hospital. Anyone who could be positive about the English weather had to be something special.

I knew he had an ostomy, but it didn’t bother me. He was so much healthier because of it and I was just so grateful he was around, bag or no. I let him tell me about his illness and surgeries when he was ready. We took a while to get together. The only reason I hesitated was because we had become so close as friends and we had a close knit group of common friends, that we both sensed it had to be all or nothing if we got together.

Since then we’ve not let it hold us back: I nicknamed his ostomy Oswald and we saw the funny side when he made noises, we saw the bright side to Oswald when we went to psy trance festivals in the middle of nowhere and managed to convince the medical team to let us use the medical tent loos (even though we spoke zero Hungarian), we realised his limitations when moved in together a matter of weeks after his second operation (and subsequent infections). Tip: Do not allow your significant other to try to move house post op, coming off tramadol and morphine.

The most difficult part of being with him was seeing him get down about having Oswald. I was so into this guy, I couldn’t have cared less if he had an ostomy or not. It didn’t scare me off but it really upset me that it made him uncomfortable, self-conscious or less confident at times. He avoided being completely naked around me at first which I understood, but his bag never put me off. It had saved his life. I fucking loved that thing.

A letter written to her partners ostomy
A letter written to her partners ostomy, click to see larger

There was one time, not long after we got together, when we were staying at our mates’ house. We’d had a lazy morning and were in the early stages of our relationship where you shag each other’s brains out. Then… the worst thing that could’ve happened happened. A leak. A significant leak. In bed. Pretty much right after a really lovely moment. Looking back now, we both think it’s pretty fucking funny. Not only did it occur at THE MOST (well, almost the most) inopportune time, but also: we weren’t at home and our best mates knew what had just gone on. But, despite it being embarrassing at the time, it wasn’t as bad as it could’ve been. It kind of got the worst out of the way pretty swiftly and we were able to get on with our lives. So what if it happened again? I don’t think it did happen again after that actually, but it took the fear out of that situation.

Two and a half years on, Oswald is gone and my boyfriend has a fully functioning j pouch. I have always said to him that if something goes wrong down the line, I’d welcome Oswald back with open arms. That bag made our relationship rock solid from the start. We had to be open and honest with each other from the get go. I became my boyfriend’s emergency contact/next of kin for his surgeries fairly early in our relationship. It brought us together in lots of ways.

We will get married in a week’s time.


And here’s a note from her boyfriend:

This is a letter my girlfriend (now fiance) wrote to my ostomy (and associates) after I had a serious shit party in my car, (leak, I think it was in the car on my way to work) and was just a bit pissed off.

We named my ostomy ‘Oswald’ and in truth we thought of ‘him’ as a third person (I’m sure you would get that).

Our relationship with Oswald was a love/hate kind of thing. We loved him for helping me be alive (just a small thing really!) but we hated him for being an arsehole. To be honest, we loved him more than we hated him.

We got together after I had my ostomy. We had been good friends before, we got together. I was all sorts of nervous but we worked out. I know Patches has written you an email describing how it all went so I won’t double up here. I just want to say that I really think it’s definitely possible to to start a relationship, even with an ostomy (shock horror!). All you need is someone who understands and is loving. Bec has been the most amazing person. I will be forever indebted to her for the way she looked after me and treated me (even when I did shit the bed). Her sense of humour was infectious and only served to made me laugh. Constantly!

Yep there will be arseholes. There will always be arseholes out there, with or without an ostomy. I read somewhere before that an ostomy is like an arsehole filter. Keeps them arseholes away. So, I figure, if somebody is all weird and shit then they are just not for you (sometimes, they mightn’t be arseholes, just not educated or open minded enough).

More Adventures in Dating – Guest Post

I recently asked those who are dating someone with IBD/Ostomy/Jpouch (who started dating after their partner was diagnosed or had surgery) to write a guest post for me about why they didn’t run screaming when they found out about their IBD/Ostomy/Jpouch. I wanted the stories from the other side. Here is one that I got, if you’d like to share yours email me at Jackie@bloodpooptears.com.


holding_handsA couple of weeks ago, as I was preparing to head out of town for a work related trip, I noticed a post on the Girls With Guts Facebook page and wanted to respond. I did not respond at that time
for two reasons. The first reason being that I did not have time at that point to write my response as I needed to be driving out of town to get to my destination. The second reason was that I was not sure if it would have been proper for me to respond since I was newly introduced to the IBD and ostomy world.

First, let me explain who I am and how I am connected to Girls With Guts. I am the Vice President of a car club in my area and a couple of months ago a new member joined my club and we started talking and she has since become my girlfriend and stolen my heart. She means the world to me and I adore everything about her. But let me get back to the story at hand. As we were getting to know each other (and before we had actually met) I had become Facebook friends with her and saw her connection to Girls With Guts and ostomies. Not knowing anything about IBD or ostomies, I did some Google searching on my own to read up and learn more about it all and while I still do not know or understand it completely, it did give me a glimpse into what it was all about. It also did not in any way deter me from wanting to get to know this girl further and then pursuing a relationship with her.

That now brings me back to the original point I was making about this post that I saw on the Girls With Guts page. You see, it was a girl with an ostomy saying that she was having a selfimage issue and not feeling beautiful. I wanted to answer her back and let her know that real beauty cannot be hidden or taken away by anything on the outside. From the posts and pictures I have seen, you have many beautiful women and none of them should let an ostomy or anything else take away from that beauty. A real man (and yes I realize that this world does not have too many real men, but rather an over abundance of males) will see that beauty and not care about those things. I got into a relationship with my girlfriend already knowing a bit about her ostomy and some of what it entails, but it didn’t matter. The moment I first saw her she was beautiful to me. I feel in love with her and had a very physical attraction to her as well as a spiritual connection with her. To me, she is one of the most beautiful women in the world and I tell her so every chance I get.

So this quick little post was written in response to that post I saw on Girls With Guts. I wish I would have replied but missed that opportunity and told my girlfriend about it and that is when she told me that Jackie was looking for letters like this for her blog. I just want you women to know that you are beautiful and any man that judges or states otherwise is not worth your time or consideration. Do not even give him a second look and just keep your head held high and find a real man. They are out there and they will adore you and everything that makes up you.


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….

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.

The power of playlists

Team Challenge update: I started running again this week. Thursday I did three miles and I thought I’d die. Seriously…I couldn’t breathe, and I couldn’t run and everything hurt and everything sucked. I just kept feeling like a giant failure. So this past Saturday was our last TC group training session. We were slated to run 8 miles but my trainer suggested that I limit it to just 6 because I’m still nursing the knee. And I was all “Oh really? Just 6 miles? Oh right considering the 3 that I ran just about killed me”. I had to wake up at 6:30 in order to get to training on time because its an hour away. The whole drive there I was just doubting myself. I felt like people would be judging me, and that I was totally just fooling myself. When I got there it was 32 degrees outside…and super windy.

Then it started snowing.

And I was all “I know, God. I got it, I SHOULDN’T RUN EVER”

I was getting dramatic, but the truth of the matter is that I was and am scared about the 1/2 which is now almost exactly a week away. Almost to the hour.

So I start walking..and the wind was blowing my face off and I was angry and freezing balls, so I start running so I don’t start to lose my limbs in what felt like the Arctic Tundra. And I ran. And ran. And ran…and I ran almost all of that 6 miles without stopping.

It was slow. But I did it, and it only hurt a little. And I felt good about it because I remembered how to breathe and how I like to run. I remembered my stride and I started to have fun again. I enjoyed running again on Saturday and a large part of that is due to the little hidden messages I put into my play list.

My running playlist only grows. I don’t take songs off, just add them. The current playlist is 30 songs long…and when it starts to repeat I’m not mad. So here is my current playlist and a few notes about why certain songs are important. Also, I shuffle it everytime so this is in no particular order.

 

Thunderstruck  – ACDC

Bad Romance – Lady Gaga

Ocean Avenue – Yellowcard

This Love – Maroon

Life Of A Salesman- Yellowcard

E.T.-  Katy Perry (This song often helps me find my pace. It seems to be the right BPM for me)

Comeback Kid – Sleigh Bells (Never fails that the iTunes gods always have this one play right when I need a second wave of energy)

Harder To Breathe – Maroon 5 (This song helps me remember to breathe. Always makes me smile too when I get all angry that I can’t breathe)

Fighter – Christina Aguilera (What woman doesn’t love this song? This song always makes me feel like I’m a total bad ass. You know in the beginning she says “After all you put me through, you’d think I’d despise you, but in the end I want to thank you because you made me that much stronger.” And this is always my little running pep talk to myself about IBD. The things I tell myself while running get totally absurd.

Independent –  Webbie Ft Lil Boosie (This song is a jam. ‘Nuff said)

Go Your Own Way – Fleetwood Mac (You guys know that I clearly love this song)

Way Away – Yellowcard 

Breathing – Yellowcard (See a trend here about reminding myself to breathe correctly)

Dance With Me – 112 (There is clapping in this song. I always clap with it. It makes me laugh and keeps me happy)

Twentythree – Yellowcard

Pressing On – Relient K (Never fails…when I get angry or I’m ready to give up, this song comes on. Almost always in the last few miles of my run.)

Believe – Yellowcard

Fixed At Zero – VersaEmerge – The verse of this song goes like this:

There’s a vulture on my shoulder
And he’s telling me to give in
Always hissing right in my ear
Like it’s coming from my own head
It’s got me mixed up
Trying not to give up
Tell me there’s a way to get out of here
Oh, fixed at zero!

I never really thought a lot about this song, until one day I was having the worst run ever. I kept telling myself how hard it was and how much I was not cut out to run long distances. This song came on in one of those moments…and it threw it right in my face that my biggest competition is myself. I am the only one who has told me that I can’t do this. This song is an attitude check.

Miles Apart – Yellowcard

Who I Am Hates Who I’ve Been – Relient K (This one just has a good message)

Let Me See Your Hips Swing-  Savage

TiK ToK – Ke$ha

to da window,to da wall –  Lil Jon

Wall To Wall-  Chris Brown

We No Speak Americano – Yolanda Be Cool & DCUP (Good song whenever you need a pickup or are feeling tired)

7 All I Do Is Win – DJ Khaled (ft. Ludacris, Snoop Dogg, Rick Ross & T-Pain) (All I do is win. Bam. Also…my hands always go up when that part of the song comes up. I’m a run dancer.)

Belly Dancer –  Akon

Dance In The Dark – Lady Gaga (My favorite Gaga song)

 

So a lot of the songs on there are just the right BPM for my pace. It took a while to find the right ones that weren’t too fast or too slow but this playlist works pretty well for me. I also did not put any of those songs on there (except Fighter) for any purpose other than I liked the songs. It was from listening to them over and over while running that it was some kind of fate that they found their way onto my playlist and always seem to play at the right time.

Are you going to Vegas with TC next week? If so I’m going to try to organize a big photo with all the internet friends I’ve made!

Thanks for always reading and supporting me.

 

 

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.

8K, Mountains, and Braveheart

Saturday night I ran my first 8K. This is a great distance and I don’t know why more races are not 8Ks. All races should want to be an 8K.

Anyway, since I got home from camp I have been trying to get my life in order and haven’t had a chance to run. I also only ran twice at camp and those were both half-assed runs. So I spent all last week fretting over this 8K. I wanted to do it because 8K is a new distance, and it was half path, half trail. I thought that since I have the mud run coming up next month, that the half trail would help me prepare for that mud run. However, after not having ran I was nervous. Could I still run any distance without dying? Did my legs still work? Why the hell was this race at 5:30pm when it was balls hot outside? I talked to everyone I knew and literally across the board everyone told me to do the race. Even my friends that don’t run. So Friday I registered for the race…begrudgingly.

So I showed up to the race Saturday evening and I had to pay to park. Minus 1pt for the race.
Then the tech shirt that was promised was a cotton tee. Minus 1pt.
It was so hot, I was sweating. Sitting down. In the shade. Minus 1 pt.
I felt like the only person there who didn’t bring a friend. Minus 0pts. Its not the race’s fault no one will run with me.

I started to get really nervous before this race because of the heat. No one except you guys seems to really understand this looming fear of dehydration that I have. I had my water bottle and I drank what I could before without making myself sick but I was still scared.

So I decided that if I just sat around alone I’d psych myself out and the run would suck. So I got out my music, cranked Thunderstruck super loud and rocked out. It totally got me pumped for the race and when it started I was ready to go. I could immediately tell that I hadn’t run in 2 weeks. I had to consciously remind myself to breathe correctly, so I didn’t die on the spot. I tried to keep my mind in the race but I just wasn’t there. I started to get angry and then I had a pep talk with myself. “Jackie, you can do this. You know you can do this. Its hard, but you’re the dummy who didn’t run. You know you just have to find your pace. Don’t give up”.

Thumbs up!

Turns out, I’m a good pep talk giver. Mile 1 sucked. Mile 2 REALLY sucked. But then it got easier, like it always does. I started to catch a pace. Thats when the hills started. Yea…hills. I have never run hills so there was a lot of internal dialogue that included “oh fuck”, “mother fucker are you kidding me?” “fuck fuck fuck”. Its a power word people, c’mon.

When things got really hard, I was literally breathing the names of people with IBD who motivate me. Inhale….exhale Lauren. Inhale…exhale Megan. Inhale…exhale Andrea. Inhale…exhale Sara. Inhale…exhale Charis. And so on until I ran out of people…I also Inhaled….exhaled 400+ people who like my FB page. I breathed all of you. Sounds creepy when you say it that way, but it kept my mind off the running and motivated me all at the same time. I’m pretty sure that got me through about 5 minutes.

Right around this time in each race I’ve done I start to get emotional. Call it endorphins or estrogen or whatever, but I start to get all teary when I realize what I’m actually doing. I get really proud, and happy, and all sentimental for a hot second and then realize I’m running and pull the emotions back in so I’m not trying to run and cry at the same time. I can barely talk and walk, so running and crying just seems like an injury waiting to happen.

Then all of a sudden it felt like something was pushing me from behind. Like it got easier, I was running faster. And I was all “God, is that you?”. Everyone always says like God walks with them and what not…and then I remembered I don’t believe in God and I was just running down a small hill. Either way…that God hill was good for motivation.

Then it turned to path. And I think I filled a swear jar in the first 2 minutes. All of you path runners out there are out of your fucking minds. I thought for sure I was going to bust my face by tripping on a root…or a rock…or a small animal…or ANYTHING else that was on the path because there was eminent danger everywhere. Some of the bigger roots were spray painted red. Like an angry red. Those roots were not saying “Hey just wanted you to see us down here”, they were saying “Haha sucka its only a matter of time until you bust your face”.

So in lieu of face busting, I chose to slow down, totally losing whatever pace I had set at that point. Then I encountered mountains I had to walk up. I know I live in Michigan, but I’m telling you I found mountains. There was a lot of “Fuck you, Mountain” going through my head at this time.

Then…my appendix burst. I know I don’t have an appendix anymore but it was in my right lower side and it was what I would imagine a burst appendix would feel like. It felt like suck. A whole barrel of suck. Every time my legs hit the ground the pain intensified. So between the mountains and my “appendix” physically I was angry. Mentally though, I was running through the woods wielding an ax, covered face paint, looking like an extra from Braveheart. I was all “Freeeeeeddooommmm”. I’ve actually never seen Braveheart, but I’m pretty sure thats how it went.

So the path ended, and I was on pavement for a hot second until they made me turn back onto another path. Then I was angry. And..I found my pace again. So I was flying. You guys, I literally passed so many people. When everyone else was poopin’ out, I was ready to go. And before I knew it, I turned the last corner and the finish line was in sight. As you’re running down the last bit of a race, often there are people there cheering you on. Since I never know any of them, its weird and I feel like they are extras in the movie of my life, paid to be there to cheer me on. But this time, I was like, hell yea. CHEER ME ON! I literally waved and smiled. Like running royalty. I was proud to be done. Happy to have finished.

I sat and took a break. And started chatting with some women I had been running close to for the race, then I made friends. No seriously, we’re facebook friends now. Its official. Turns out one of those girls has ran every race I have. That was cool. It reminded me how cool it is to have people you know at races you run.

So anyway. My 8K time wasn’t great. There was a lot of walking. I still feel like I PWNED that race. And like I said in my facebook post, gave colitis a big fuuuuuuuuuuccckk you.

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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