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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).

Job Hunting and Jpouching – Pt 1

I wanted to talk to you guys about employment and how to tackle the medical history exposure part of it. I am only going to speak of my experience, as that is what I know best.

More than likely, I’ll be breaking this post into two parts because if I don’t, I know you guys won’t read it all, and this is about to be some inspiring shit ya’ll.

So the first part is how I’m going to tell you that I totally understand employment and financial woes.

Before I was diagnosed with UC, I was working a mediocre job that I liked, but didn’t love. It paid my bills – barely – but I had enough money and freedom at my job to live a comfortable life. Then I started to get sick. And then I got sicker.

My job performance lacked and for a while my employer understood, but as I got sicker and I wasn’t as good of an employee as I previously was, their compassion dwindled. I think they thought whatever was wrong with me would go away, but when I had to leave work to go to the ER unexpectedly, which would turn into a week-long hospital stay… they weren’t so understanding.

Then the complications started. The long and short of it all is that I eventually got fired. Yes, I know that is technically illegal. But I was too poor and way too sick to do anything about it at that time. Besides, it opened up the door to grad school. The most important part of this was that I knew that I’d not be able to get another job at that time of my life. I had at least 2 surgeries approaching, and no one would ever hire me if they knew that.

Not to mention that I had already posted to the world that I had Multiple Sclerosis, and by this time I was already telling the internet about the graphic details of my bowel movements. Sure there have been moments where I thought about going anonymous, or perhaps even stopping blogging, in the fear that I would always be tainted by the healthy history I’ve posted on the internet.

But honestly (and this will sound super cheesy), I felt like it all had a bigger purpose. I knew I was helping people from the emails that I would get, and more importantly I was helping myself. I have posted my biggest ups and the deepest downs on this blog… you guys know it all. And most of the time I feel like its just you and me butt buddies. But I forget the harsh reality that the world is always lurking. And frankly, smart employers are looking for potential employees by Googling them.

There is that old adage that “If they won’t hire you because you’re sick, you don’t want to work for them anyway”. Right. Thats easy to say when you don’t need a job. The reality is that there is stuff on the internet since 2006 about my medical disasters and much more now specifically about my issues with my diseased ass. Oh..and there is that. Have you guys noticed my vocabulary? Its not like I can use this blog as a writing sample, and there is the whole ‘wanting to die’ thing that I so publicly pushed to the world. Sometimes I think I paint myself as a diseased, mental case with a tiny vocabulary.

If I weren’t me, I would have thought that I’d never get a job. At least that’s what I thought until about a year or so ago. I was still in grad school and I had a former teach approach me about a graduate student assistant position through the school. I wasn’t even looking for a job, but it paid my tuition so I said I’d take the interview. Well…I nailed it. I got a job offer that day. You guys, I felt on top of the world. For the first time since I was fired, I was working a REAL job that wasn’t under the table, working on REAL projects and making a REAL “paycheck”. Well…at least this is what I thought. The reality is this is the first time anyone had wanted to give me a job in a long time, and the first time I felt worthy of a job. It did scare me that they’d look me up and see that I was some degenerate swearing butt talker. I had my family telling me I “deserved” the job, but I didn’t feel like that. It was only a part time job and all I could think about was, “Can I even do 20 hours a week?”. But I had this shining moment where I realized that I didn’t get that job because of anything other than they thought I could do it and that I brought something to the table. This GSA position was like a real job, and I wasn’t just a gopher. I did that job well for a year until I graduated and then had planned on trying my damnest to find another job. During that year, I worked hard, played hard and met some fantastic co-workers. No one there knew I was sick, or had been sick.

And when I decided to tell them all, you know what they did? Told me that I was impressive. They didn’t say that my job was on the line or anything negative but that despite my illnesses they respected me that much more. I must have impressed them, because right before graduation, they offered me a full time job at the library. And university jobs are no joke, we’re talking like a real grown up job, with grown up money and benefits and no one gave half a shit about my health history. IN FACT…most of my co-workers donated to Girls With Guts.

I want to also tell you guys that during this time I had many conversations with friends and blog readers about finding employment after you post your crap (literally) to the world. After starting Girls With Guts, it became my goal to work for myself – that way I never had to worry about who my boss was and what would happen if I got sick again. However, working full time for your own non-profit is incredibly difficult. After graduation I had to be realistic in my job prospects…I had to find a job that would pay my bills, and give me some flexibility in my life to be able to run GWG…

 

Stay tuned..part two tomorrow!

Tough consequences…

Today is November 18th, and my half marathon with Team Challenge is oh so very close. Like 14 days away from today close. At this point I’m supposed to be tapering down my mileage.

Instead…

I’m not running at all.

Why?

This is why.

What knee cap?

That my friends, is what I did last Friday night. Since then its turned into this.

And here I am 9 days later and I have just now stopped limping. I still can’t bend it all the way, and if I put too much pressure on my left leg it feels like my knee cap is going to pop right off of my leg. So…what does this mean?

I’m not really sure. I trained at the gym last monday and my trainer told me he doesn’t think I’ll be able to do the half. I’m pretty determined to do it, but at the same time, I’m not training. I’m not running. Its like starting over if I try to do it and do it well. Ugh.

Remember how I was all “I want to do this well and kick its ass”… I will not be kicking any ass TC weekend in Vegas. I’ll be lucky if the hotel has enough ice to control the swelling in my knee after I force it through 13.1 miles. I’m kind of in this place where I’m not sure if it all has set in yet. I haven’t accepted that I really might not be able to do this race. Like…really.

Instead I just keep telling myself that I have plenty of time to recover and somehow magically my stamina will be fine and I will still have that picture perfect moment crossing the finish line like I imagined. That I’ll be running across that finish line…that I will cross it at all.

Am I nervous? Meh. Yea a little, I don’t want to screw anything up permanently. Am I frustrated? Yea. Really frustrated that I raised over $4,500 with the promise that I’d train my ass off, and cross that finish line while simultaneously punching IBD in its face. I really don’t want to be on the sidelines. I really really want to do this race to the best of my abilities and I haven’t realized that “my abilities” might have just changed in the last week.

:::face palm:::

In other news, my semester is almost over. Just a few more tough weeks and I can ::hopefully:: graduate and get a real life that doesn’t include 4 jobs, 2 classes, a 1/2 marathon, and a new non-profit. I’m really hoping that a job will pan out and that I can not stress about money. If that happens it will be the first time since I got sick…over 3 years ago that I won’t have to worry about money. Wouldn’t that be amazing?! I don’t even remember a life where bills got paid on time and going out to dinner leave me feeling guilty.

I want to have money to lead a normal life. And I want time to focus on Girls With Guts. Doesn’t seem like too much to ask for to me!

 

 

9 Miles is far. 10 is further.

That post title is a real teaser eh?

Last weekend I ran 10 miles. The weekend before that I ran 9 miles. I want to talk about that weekend because that, my friends, sucked. Big ones.

9 Miles was the furthest I had run at that time, and I was scared going into it, but ready. I could feel myself starting to doubt my abilities, but I had a little mental pep talk and I felt like I was ready to go. It was pretty cold out that morning, and I wore all my fancy running clothes to keep me warm but I still felt like I’d need a jacket. So when I left, I had Under Amour, a running zippy by Lucy, and a fleece jacket. Too much? Yes, too much.

We were running a new path, and I was really enjoying it at that time, my stride was good, my pace was good and I felt awesome. I was rocking out to my music and mentally telling myself how awesome I was. I was like, “Hey self, you are kicking ass on the last 5 miles, you’re like already over half way there”.

And then my iPhone spoke  to me, and told me I had only ran 2 miles. Fuck.

I immediately felt like this was not going nearly as well as I thought it was. And it wasn’t. And it was going to get worse. After I had gotten to mile 3 or so, I started to get hot. Like super hot because I decided to dress like I was running in an Arctic tundra. I wanted to ditch my coat somewhere but I had my car keys in it, and this world is full of crazies so I didn’t want it to get stolen.

Mile 4 took forever to hit because the whole time I kept thinking 4.5 miles is only half. HALF! Our turn around point was at 4.5 miles and as I turned around, I just looked back and thought…I’m going to die. This is it. I’ll never make it back. If I had my phone, I would have phoned a friend and shamefully drove my ass back to my car. But I didn’t have my phone, and my only option to ending the misery at this time was to get to steppin’.

By this time my intervals were shot. I never knew if the beeping in my ear was to run or walk. My feet started to hurt. My hip flexors gave up. They were tired of working and instead of really running I was doing this sort of walk, leg thrust thingy. Where basically instead of putting your feet first you’re throwing your hips forward in hopes your legs will actually follow. It was painful and required a lot of thought. To make matters worse, walking was actually harder than running. My body was totally giving up on me, and I couldn’t even take solace in walking back..I had to jog because the walk was much harder.

At this point I realized attempting to hit any kind of time goal was lost. So when I did walk, I stopped to take some pictures of the beautiful Michigan Fall season happening around me. Honestly, I love Michigan in the Fall.

Then the scar tissue chimed in. I have never had my scar tissue hurt while running before but at mile 7…it was screaming at me. Excruciating pain in my lower left abdomen, not even at my former stoma site. It was horrible, every step was like a stabbing pain. At mile 7 I really wanted to give up. Honestly, more than I ever have before. I was done. Mentally and physically shot. Angry at myself for choosing to run this far. Angry that I had to carry my coat and that I even brought a coat. Angry that my interval training was still beeping in my ear and that my play list was repeating and that there were cars at intersections. EVERYTHING made me angry.

Every time I felt like I was close because I thought I recognized something, I remembered that my running app tells me my mileage, so clearly I was not close. Mile 8 hit and I was like ok, just a mile. But at that moment a mile had never been so far. I was walking with the grace of a zombie at that point. The anger had passed and now I was really hopeless. Sad my body couldn’t do it, and gave up. I got all full of tears as I started to realize, if I can’t hit 9 miles, I’ll never hot 13.1 in the race in Vegas for Team Challenge. I was defeated. I wanted so badly to just sit down, and cry it out, but I knew if I sat, getting up would suck and I still wouldn’t be back at my car.

Finally, the iPhone chimed in. 9 Miles! Yay workout completed. The problem? I wasn’t back at my car yet. The course was actually 9.5 miles…I still had .5 miles to hobble back to my car. And hobble I did. I got back there and just sat. Didn’t move. Still just second guessing the shit out of myself.

I got home and slept for 4 hours. My body trashed. Angry. Sore. Hurting. My ego crushed. I called my running pal Lauren, from Forward Is A Pace and lamented my awful running experience. I wanted to curse the day I signed up for TC, and myself for even thinking this diseased thing I tote around (my body) could handle 13.1 miles. I needed a pity party.

I was sore for about 5 days. Legit pain in my hips. A constant reminder of my failure at 9 miles.

And last weekend, I woke up and went to the same park…and I did it again but instead I did 10 miles. And you know what? It sucked. Everything happened almost exactly the same but the only difference is, I went further and it didn’t hurt as bad. I didn’t nap after. My body recovered much faster. I got frustrated and angry at some points, but I didn’t want to give up or cry. I wanted to get back to my car still standing.

I’ll say this about running, it doesn’t get any easier (at least not for me), but it doesn’t get harder either. I pretty much max out as hard as it will get, and stay there and then its just a mental battle of getting through the tough part.

Additionally, I did 10 miles without a bathroom stop. I checked bathrooms for 5 miles and all of them were locked, and while I would have preferred to have one as I would have probably couldn’t have stopped worrying about not having a bathroom, I didn’t need one. It’s not that I needed to go, but running makes you want to poop even with people who have healthy colons. So, I just wanted to have the security of a bathroom every few miles. But I didn’t. And it didn’t matter.

Thanks jpouch.

And on that note, here are some pictures I took while running the 9 miles. Pictures don’t do it justice.

 

 

 

 

 

 

 

 

 

 

 

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.

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.

What is the best nation?

A Donation.

I heard that from a homeless guy in downtown Detroit once. I thought it was clever. Clever enough for a buck.

I was asked recently if I take donations for my site. I didn’t…but not because I’m against money but because I never thought about it. So I set up a donations button through Pay Pal and slapped it on the right side column of my blog. Now lets be clear, I am not ASKING for donations. In fact, I think that sites like mine that ASK for them is kinda weird and I’m all “what the hell are they spending money on anyway”.

It does cost money to run this site, not a lot, but since I’m living on grilled cheese as it is, it is enough to be significant in my life. So what I’m saying is, if anyone out there feels so inclined and wants to pay my mortgage, who am I to stop them? I mean really, that would be rude.

Also in case you’re wondering my mortgage is about $400/mo. So cheap, right? Wouldn’t break the bank for you at all. KIDDING.

No seriously, the idea of accepting money from strangers to pay for hosting and what not on my site is a weird thing for me and makes me mildly feel uncomfortable. But I wouldn’t have made it possible if someone didn’t ask me to do it.

Stop being all judgy. And start being more spendy. Kidding. Again.

 

 

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