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Camp Oasis

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.

Why I DO fundraise

In February I did this post about why I don’t fundraise. Well as many of you might have noticed….I am fundraising for Team Challenge.

So, what gives?

Well, I still feel exactly the same way I did when I made that video and posted that blog. I think many fundraising events are boring and uninspired. Ask people to raise a bunch of money, walk a few miles and chat with their friends. Meh. Put all that money towards “research”, whatever the hell that means. Find a “cure”, and whatever other bullshit there is.

Now don’t get me wrong. It is important that people do these events because someone somewhere is actually doing research. So you know, good on you guys for that.

But it’s just not my thing. Also…again. I have boat loads of diseased friends. I couldn’t possibly financially support ALL of their walks, golf events, runs…etc.

So Jackie, why the hell are you doing Team Challenge?

I started running and all of my runner IBD friends have done Team Challenge and told me how amazing and life altering it is. And when I made that video I was still like..uh…fuck that.

Then I ran some more and then I learned more about Team Challenge. I like the money structure of TC because literally 75% of the money raised goes to research and more importantly camp. Camp is what struck the chord. 2 Years ago we had to cut back the number of kids we brought to the MI camp because of a lack of funding and that broke my heart. So when I started to run, and kinda liked it, and then realized I could raise money for camp, I was like….whelp…I guess I’m doing it.

Also, for me, this is about me too. I’m not just walking a few miles and chatting with friends. I have to push myself. I have to work. I have to want it or else it wont happen. Its about how far my body has come in the last few years from death bed to potential 1/2 marathon.

So it is mildly selfish because I want to do Team Challenge for ME. But at the same time, the cause means so much to me. It was like serendipity that it all came into my life right now. I met my great “crazy ass gazelle” friends, as Charis calls them. I made that fundraising video. Then all of us met up in Chicago and at that time they were all training for a different Team Challenge event and I kept making jokes about getting donuts while they would be out running.

And now. I’m one of them. I’m a crazy ass gazelle. Team Challenge gives me the opportunity to raise money for a cause that changed my life. It gives me a reason to continue running and to do it further and harder than I ever have. And in the end, it also gives me an experience. It brings me together with my old friends and new friends and lets us share something that is really special.

That is why I am fundraising for Team Challenge.

And by the way…I am at 48% of my goal already! Which is sort of amazing.

If you’re a Team Challenge participant I am making/selling these bracelets to help me raise money.

I am also making ones that say “I run for _____” and insert your person/place/thing on the line πŸ™‚

If you’re interested in buying one, please donate and make a note, or just email me. Thanks guys!

 

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.

Camp Oasis Michigan 2012

As a 3rd year returning counselor to Oasis this year…there isn’t much to add to what I’ve already said about Oasis here and here.

The big difference this year was my age group. I had 9th grade girls which absolutely terrified the shit out of me. 9th grade girls are a species all of their own. I know. I was one of them many moons ago. Everything is a BIG deal. Everything results in emotional tears and everything is the best thing ever or “epic”.

My time with my girls was different than with the 10-12 yr olds I’ve had in the past. It wasn’t worse, or better, but different. At night, we end the day with Evening Embers, which is normally a time that I use to teach the girls something about IBD or life. I’m like the IBD Yoda. It often turns into a heartfelt conversation however in the past it never included tears. Every one of them spilled their life story. It was amazing and exhausting all at the same time. I never wanted to cut them off, but after a 15 hour day, I wanted to sleep. Instead I had 9 girls balling their eyes out on my bed. Again…a different experience. 10 year olds cry about things I can fix. Their arm hurts? I can fix that. They are embarrassed? I can help that. They miss their mom? I got that. But tears over life dilemmas? Fuck.

I don’t even have my life figured out, so my advice to fretful 9th graders probably wasn’t the best. But the more I talked about my life, the less I was their fearless leader…and the more I became a crying teenager. When the topic of guilt came up. I lost it. I have talked about guilt on here before, and it hits such a strong chord within me. They were crying over disappointing their parents and I cried about the same thing. While their concerns were over their failing grades, mine were about the money and time I’ve cost them during my sickness. I guess some things never change no matter your age. Then I had a camper who had a close family friend pass away unexpectedly the day before camp. She was talking about triggers all over camp that reminded her of her friend…and that did it for me. You might remember my friend and co-counselor Katie who passed away last year. This is the first year at camp without Katie. We’ll just say it was very difficult for many reasons, and leave it at that. But watching this girl fall apart over her friend was where my emotional capacity for holding it together hit its max. More tears.

So did I bond with my girls? Of course. Was I the best counselor to them ever? If I’m honest, probably not. My cabin suffered some serious issues within the first 2 days of camp. I lost my co-counselor to sickness, and then a camper who left because she was “sick” and by “sick” I mean…well…let’s just say camp wasn’t the right place for her. I was just starting the process of building us as a family by late Tuesday night and at this point I was already exhausted. I gave those kids my all, even though I feel like I have done better in the past.  We had some former campers come on as counselors this year and they mentioned how they never realized how much harder it was to be a counselor. Or how much work it actually was. That right there was validation for me. Sometimes its really hard to get up, and be the cool mom to 9 kids for a week. You’re constantly worried about their health, happiness, what they are eating, who has allergies, who is home sick, who can’t find their bathing suit, who is skipping meals, and everything else you can imagine. No seriously…EVERYTHING. I do my best to make sure these kids have boat loads of fun, but at the same time run myself into the ground. My jpouch hates me after a week of camp. My body is tired. My mind is exhausted. And I am confirmed in my decision to never reproduce.

But you know what? This year was very different for me. It was super emotional, and more mentally exhausting than physically. It wasn’t my best year. But I still love it. I love Camp Oasis for everything it represents and everything it means to me, my friends and those kids. I cannot explain it more clearly but Camp Oasis changes lives. It changed mine, the kids say it changes theirs and every new person can vow that it changed theirs as well. It creates support, family, understanding and true friendship. I can’t say enough good things about it. This year was hard, and there were many things I wanted to gripe about, but at the end of the day, it is still the best week of my year. And I will keep going back until they kick me out.

But gladly I have another week coming up here soon but this time in Wisconsin and I couldn’t feel more privileged to participate in 2 weeks of camp this year!

So here are some pictures from camp.
http://www.flickr.com/slideShow/index.gne?set_id=72157630670309902&text=Camp%20Oasis%20Michigan%202012

Created with flickr slideshow. 

And here is a poem a camper wrote and performed in the talent show. I think it hit home for all of us.

I Thought I’d Be Nervous To Share This But I’m Not Because Camp Is Home
By Olivia, read at MI Camp Oasis Talent Show on 7/13/12

Because here we know everyone bleeds sometimes.
Because I like myself most when I’m here; am joyous and
loving and less afraid. Closer to the person
I want to be. Because leaving this and leaving friends who are more like
sisters
tears me to pieces
and coming back feels like coming
home. Because we have to be Crohn’s and
UC kids
all the time
and not one more kid should have to be that.

Because I have seen pain I can barely understand splayed
on the faces of my sisters.
Because I have seen them fight with courage.

Because sometimes it’s so much
easier to give up;
because medicines stop working and our
bodies get tired and it’s
so. hard. to go forward; so hard to be grateful,
hard to be loving,
hard to feel stronger,
hard to be vulnerable and
open when our broken places still
twinge.

But because my sisters around me are doing the same,
crying with me and singing encouragement,
falling and hurting and rising and loving with
open arms,
going forward; because
here, together, we are strong enough.

And here is a video of the rain storm that we do around the camp fire

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.

Kirbi Fagan Illustrations

A while ago a great friend of mine wrote about my blog, in her blog because thats what blogging people do. However her blog is about her illustrations and it was about an illustration of one of my cute little mutts.

So I thought I would return the favor. I met Kirbi 2 years ago at Camp Oasis. We were both first year counselors and didn’t know anyone else at camp. It took some time for us to feel out the surroundings but it didn’t really take long for me to get that Kirbi was a girl I could hang with. She was significantly younger than me at the time, a wee 19, but honestly with the maturity of fucking Gandolf. Sorry I swore Kirbi. You probably can’t use this for press.

Anyway, Kirbi was diagnosed with Crohn’s when she was a kid, and has been through the ringer. Shes been on tons of meds, had a resection, etc etc. Shes no joke. But what I love most about Kirbi is her undying kindness. I swear she makes Mother Theresa look like a heartless bitch. (Sorry again.) Kirbi can take the most tender 8 year old who is home sick and turn her into an outgoing kid who has learned to be proud of herself in a short week. She always sees the good in people, and I have learned so much from her.

Attending Camp Oasis really changed my perspective on a lot of things. I didn’t really realize that was the catalyst until many months later, but Kirbi was apart of this huge attitude shift that I had. Kirbi and I share a love of art (although she is WAY better than I am), and we both adore being counselors for Oasis. She is someone I can fall out of touch with for a few weeks and then pick up the phone and just chat like its been a day since I’ve seen her. I am so incredibly lucky to have someone like her in my life, not only for her knowledge of IBD and our common interests but because she is a vital member of my personal support system.

I once said “Everyone needs a Kirbi in their life” and I really mean it. If you don’t have a Kirbi go find one. She’s so amazing and the best part about her is that she doesn’t realize how amazing she is. It is just who she is in her core.

Go check out Kirbi’s art, and commission her to do a huge amazing painting. Cause that would be cool and she would make you something mega bad ass.

Kirbi Fagan Illustrations

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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