Hey Friends. I have been pretty MIA lately due to a busy life, a growing non-profit and an active social life. All of which wouldn’t be possible with my awesome jpouch. I put it to the ultimate test a few weeks ago though when I went on a 3 day, 4 night hiking trip at Big Bend National Park in Texas.
I am currently starting a new medication for MS called Tecfidera. Much to my chagrin, the first month of this medication has patient reports of mega GI issues. So “mega” that many patients with normal colons stop the medication. Jackie, why are you such a dumb dumb and taking this med? Well, in terms of MS medications the options are limited because I am not “compliant” with taking injections. Which basically means no matter how many times I start an injection therapy, I forget, don’t want to, or whatever other excuse there is for not taking it. Last year I tried Gilenya, which was the first oral medication released for MS, and well…I can’t take that one either. So I’m here, trying Tecfidera and all was well for the first week or so but now, its just dehydration all over. My poop is 100% liquid, and I haven’t been eating much because it makes me feel super nauseous. I even had an accident last night because the stool was so loose. This literally NEVER happens to me. So this brings me to my favorite IBD delimma, to ER or not to ER. Before you give me the lecture, just know that I will probably wait until the last minute to go because its what I do.
BUT the whole point of this thing is symptoms of dehydration because so many are obvious and a few are not so obvious. So when I’m dehydrated, here is what I feel.
- Extreme fatigue (I’m sleeping like 11-12 hrs a night and its not helping)
- Dry and itchy eyes
- Sore throat or a “sick voice”
- a heavy head, it feels difficult to keep it held up
- It feels like I poop liquid more frequently, almost as if my body is tying to deplete itself
- Contrary to most people, I don’t feel thirst. I actually do not want to drink at all
- Dry skin on my face and hands
- Constant headaches all over my head, unlike a cluster headache
- light headedness
- difficulty with breathing
- everything is slow, my walking, my talking, my thinking, everything
- fever or hot flashes
- I also feel very cold and get chills often, regardless of the hot flashes
- heavy heart beat. When I lay still I can feel my heart moving my whole torso when it beats.
- Sore back between my shoulder blades
So what do I do about it? First I get really frustrated and angry. Then I load up on Smart Water (because I truly believe it works). Then I sleep a whole lot. I’ve been pretty depressed lately, so I’m doing my best not to cry. There are these hydration packets that I think I’m going to try this time. Frankly there is a huge part of me that wants to just give up on the home hydration because its exhausting and very frustrating. But someone once told me the importance of taking control of your health even when its going down hill. I recently learned that the way you do or don’t take care of yourself can frame how someone views you. I always make jokes about my future, and how pitiful it maybe, but I learned that not everyone thinks those jokes are funny.
Frankly, I’m tired of taking care of myself, but you know what? You do what you have to do and hopefully this time won’t involve the ER.
So I’m dating. Well, I started dating. Let me rewind.
Dating is a HUGE topic in our community because there is a lot of fear around disclosure and acceptance. In the past I’ve written about dating and my opinions, but I have never actually dated since I was diagnosed with IBD. So all of my theories and advice were pure speculation, even though I still consider it solid advice.
So now I have legit experience in the dating-sphere, and I’d like to share it with you guys. I approached dating cautiously, after all the world is full of crazies. I haven’t actually dated…ever. I was in two very serious relationships for the last 13 years so not only is dating with IBD/jpouch scary, dating in general scared the literal shit out of me. I realize that I tend to talk about my butt to anyone and everyone who will listen, but I also realize that is not great first date conversation. Or at least that’s what I’ve read in forums and other blogs. Hell, I think that’s the advice that I gave in the past.
Here is what I realized…I can’t not talk about my butt. First dates, and even the predating period, it took me a matter of days, if not hours to spill the details on my defunct digestive system. I literally can not stop talking about my butt, and my blog and Girls With Guts. If this was the test, I failed with flying colors. Even if I wanted to hide my history, if just for a few dates, I can’t. My name and face is plastered all of the internet with “butt disease” slapped right next to it. I have positioned myself in a place where my future beau can read details about how I poop, see my fat face pictures, and view graphic photos of my body when it was at its worst. This is my life, there is no hiding it, there is no going back. I get that is scary for potential suitors, but whelp, this is me.
But you know what…not one of the guys I was talking with cared. In fact, many of them talked with me about their own health ailments and it made me realize a few things about the world. First, that many of us are all giant health disasters, and also that people like and fall in love with the person, not their medical records. I’m sure there are people out there who might run screaming from me on a first date, but frankly, I never found that guy. Not once.
In fact, I found the opposite. I have found someone who cares about me because of what I’ve done with the hand I was dealt. Someone who understands and can relate. Someone who I think is really great, and who thinks that the sun shines out of my ass. Actually, I’m going to ask him to guest post so he can tell you himself what he thought when he met me, learned about my butt disease, and MS and why he didn’t run screaming.
So don’t let IBD scare you away from dating. There a million reasons why someone can like you, or not like you, and frankly IBD is probably not one of them.
I posted on the BPT facebook page earlier last week that I had pouchitis and that I was taking Flagyl for it.
Well…I got cocky.
I felt better within a few days and like a total dumb ass stopped taking the Flagyl after only about 5 days, only half of the recommended course. In the past this has worked for me, however I was not so lucky this time. It came back, and it came back angry. I noticed it again last Thursday but it really took a toll on Friday. I decided to start taking the Flagyl again but by that time the damage was already done. I laid on the couch most of Friday, Saturday and Sunday hoping to get less tired and feel better but it didn’t really help. So add in some person life drama, and drinking way too much coffee over the last few weeks and bam. Tuesday I checked myself into the ER for pouchitis and severe dehydration.
If you’re like me, you debate the ER for about 3 days before actually going. I called at least 4 friends to get their opinions. I even had my spiel for the doctors and nurses ready to go. It went something like, ” Hi, I have pouchitis and I’m dehydrated, just get me some saline and a CBC and I’ll be out of your way”. But we all know what never really works. By the time I decided to actually go, I needed to go. I got there and after I got taken back, and put in the hallway (which is so fun as a patient , I literally could not keep my head up I was so drained. I had to take a huge breath before speaking because I was out of breath, and light headed. If I had waited much longer, I probably would have needed a ride, and I hate having other people drive me to the ER. I hate inconveniencing anyone else with my stupid body.
So I get there and after about an hour and a half, I finally got my IV and my fluids. Shockingly it only took one poke, but of course it wasn’t after the nurse telling me over and over how small and deep my veins were, which generally just gets me primed to ask for another nurse, but she got it, and only after like digging around for a few short seconds. To her credit, I’m not even bruised. Well done over chatty nurse, well done. So here is the best/worst part of the ER. They only half hear what you’re saying. They asked if I had pain or nausea, and I really didn’t so I said no, or it was minimal. So when the nurse came back with my goodies she brought, saline, IV Flagyl, IV Benadryl, IV Zofran, and IV Dilaudid. I was like, well, I’m never one to turn down the fun meds so shoot up, but srsly….doctors of the world, does anyone listen? I was actually pretty stoked for the Benadryl because it would help me sleep, Zofran and Diladud are like a weird fucked up bonus.
This ER story is much like many others. They gave me drugs I didn’t need, the Resident treated me like I was an idiot, and the nurses were amazing. The end. I decided to stay in observation for a few extra hours just to get the extra fluids because I thought I’d go to work the next day. But I didn’t. I woke up feeling better, but still just so damn tired. So I stayed home and wished I had stayed in observation for 24 hours so I could have gotten the fluids.
I’ve decided to turn my life into a drinking game to keep myself hydrated. Wake up – Drink. Take a shower – drink. Pet your dog – drink. Check facebook – drink. Its really a totally blast. Actually, its not, I hate trying to stay on top of my hydration. I suck at it, because I drink enough water for normal people, but not enough for the colonless. So I’m posted up at work today with some pedialyte and a water bottle.
So what are the lessons we’ve learned from my mistakes?
Take your damn Flagyl for the whole course.
Also above all this reminded me that no matter how far I run, or how many programs Girls With Guts has, or how many degrees I get, or the fancy job that I have…I am still chronically ill. Not that I pretended not to be, or that I thought this was all past me, but I was doing so well for a really long time. And I got careless. The worst part about all of it, is realizing that this is my fault and it all could have been prevented. I realized a long time ago that I am not fragile, but it took this to remind me that I am not indestructible.
Hey remember me? I used to blog here. LIfe got in the way and I’ve been a little MIA.
While I was gone I ran this little race called The Las Vegas 1/2 Marathon, oh you know, NBD.
Check that. It was a total big deal. Here’s how it went.
We arrived in Vegas on Friday and the race wasn’t until Sunday night. I had never been to Vegas before so I was pretty pumped to see the city and try to soak it all in. Friday night my team went out to Senior Frog’s and had dinner. I sat at the table with two of my teammates who I didn’t really know. Through the meal and conversations, I realized that I actually knew of my teammates. Well…kinda knew her.
Sometime last year, or maybe even two years ago my sister was getting her hair done at a new salon. Because my family talks about my butt as much as I do, she revealed to her hair dresser that I had UC and MS and that I blogged about it. The hairdresser revealed she also had UC and my sister encouraged her to check out my blog and connect with me because the salon is only a few miles from my house so we must live close to one another. Well, the hair dresser never emailed but it was a cool story nevertheless.
Fast forward to Senior Frog’s and the hairdresser is Michelle, my teammate sitting across from me at the table. I don’t know if there has ever been a more serendipitous moment in my life.
Saturday night was the pasta party, which is a lot of carbs and inspirational talk. It was nice, a bit of sensory overload, but nice. After we left there, we went to a Cirque show. I chose to see Zumanity because if there is a show with acrobatics AND nudity, I’m all in. It was pretty amazing. Sunday rolled around and the nerves started. The worst part was that the race didn’t start until like 4pm, so I had all day to sit around and be nervous. Normally when I run, I dont eat, or I eat very little before because I don’t want to have to poop especially for long distances. Well this plan was totally shot because our race wasn’t until the evening. I knew that I couldn’t skip all meals before the race so I was really nervous about what to eat. So I went with the safe breakfast foods, soft stuff, everything I’ve ate before and there was no issues. I had walked around a lot the days previous to the race, and my feet were hurting a little so that Sunday morning and afternoon I just sat around in our baller hotel room and lounged in my comfy bed, napped and watched some tv. As race time approached, I really didn’t want to do it. I was worried about my knee and my lack of training and I just wanted to not show up, and just pretend like I wasn’t there for TC.
Begrudgingly I started to put on my race clothes, which I fretted over. Too warm? Too cold? Too tight? Not enough pockets? It almost felt like I had never ran before in my life. I was so nervous.
Finally I was out of time. I put on the rest of my clothes, my RFID shoe tag and walked downstairs to meet my team to take the bus to the starting line. This was it. I got down there, and started chatting with my team, and I realized I was ready. I was calm. I was happy. I even had a wonderful young lady who follows me on twitter come up to me and chat with me.
Then I got the phone call. I had actually put on the wrong piece for the RFID tag on my shoe. It was up in my room. The bus was outside and if I didn’t have it, then I wouldn’t have any timing for the race. It wouldn’t even register that I ran it all at. So I panicked. I had to get up to my room and back before my team got on the bus and that was just impossible. Someone told me there would be more busses so I just had to run and hope that I’d catch a bus, if not…I wouldn’t be racing at all. I hauled balls, got the tag, got back and caught the last bus with Team Florida. Crisis averted, although I was panicked and flustered and not cool and collected which was not good. I got to the race, and I couldn’t find anyone from my team, but I did find Lauren from Forward is a Pace, who is responsible for talking me into doing TC.
I waited in line for the bathroom for what seemed like forever, was worried I’d miss the start of the race, and when I got out I saw that my corral was WAY down the line. Balls. So I literally ran to catch up to them. I got to chatting with some more people while we waiting for the start of the race. I had the Girls with Guts symbol on the back on my running singlet, and I had a few people tell me they knew about GWG, which was really cool.
The start line was in sight and as I approached the wind had picked up to what seemed like 50 MPH. It was like a damned tornado out there, dirt and dust flying everywhere with a particular affinity for my eyeballs. But then the gun sounded and it was time to run. The sun had already set, the temperature was chilly but got comfortable when I started to move and as I moved it felt good. I was passing a lot of people, saw many of my teammates and that was really cool. The lights in Vegas at night are amazing and having the whole main strip closed so we could run down it was a really cool experience.
I’ll be honest, I felt like I was killin’ it. I had a great pace. I felt strong, I wasn’t walking. It was like the stars were aligning for me to run the race of my life. The miles were falling away and I felt super good, but then I slowly began to hit a wall. So I ate some GU and kept on chuggin. Along the way I passed a chapel and noticed a TC singlet on the person getting married and I was like “oh cool! Getting married during the race!”. I looked closer, and realized it was one of my teammates. So I stopped running to watch their ceremony, which was awesome. Over all in the race, I stopped once for a bathroom break which was SO awesome. Around mile 8 or 9 things started to get hard. I walked for the first time, which was amazing to me. Like I said, I felt like I was killin’ it. I knew that it was just a matter of the mental battle at this point, that keeping my head in the game was all that was between me and finishing.
I chowed down some more GU, and just kept on crusin. My knees started to hurt a bit, my hips were a little achey, but nothing like how they were in the past. I got to this point where it was much easier to run than walk. Walking was painful, and threw off every rhythm I had. I could see the finish line way in the distance and I knew I was close but it was like one of those trick finish lines where it looks close but you’re in Vegas where buildings are huge and you have no real depth perception. The finish line was far. I started getting annoyed, I wanted to be done. It felt good and I was really proud of myself but I was tired.
Finally. I was there. I was disappointed when there were no fireworks upon my crossing of the finish line. There was no medley sang just for me and no dance crew out there. Not even a damn reporter. Total bullshit. But there were 1,000 photographers shoving cameras in my face as I tried to get to the end of finisher’s section. Every single race photo is awful by the way, which is just super.
So…I did it. I didn’t die. I even liked it. The next day I was sore for sure. I walked all kinds of funny but everyone else at the airport did too, so we all knew it was the 1/2 marathon pimp walk.
I did not hit my goal. My goal was under 3 hours and my time was 3 hours and 3 minutes. When I take into account that I stopped to watch a wedding, I think I would have hit my goal, which is just mildly frustrating. Overall. I think I did pretty well, and I was really surprised at how far I pushed my body and for once, it didn’t push back.
I’m not going to lie…all the training on Saturday mornings and in the heat or the cold…was worth it. That feeling of accomplishment was pretty intoxicating. Everyone is congratulating you, and there was this overwhelming pride of knowing where I had started in 2009 with UC and where I just finished. In Vegas. After a 1/2 Marathon.
It was the ultimate “suck it” to colitis. I was really proud of myself, which is often hard to accomplish when you often feel like a leach on those in your life. TC is really about hitting your own goals and competing with yourself. Sure, I wanted to hit my goal, but I wasn’t racing anyone else there. I was so focused on myself and my run that no one else mattered.
I had a lot of people come up to me before, during, and after the race when they recognized the GWG logo on my back and that was really amazing. Sometimes Charis and I sit here behind our screens thinking that GWG resonates with people, but it wasn’t until I was around people who knew about us that it really rang true. That was an added bonus to the weekend.
Am I done with TC? I thought I would be. I might be. But it comes to Chicago in June…and that might just be too close to turn down 🙂
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.
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.
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.
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.
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.
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.
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.
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.
Ok how about this?
Wouldn’t it be great if when someone said, “I’m going for a scope tomorrow”, it meant they were getting a sweet telescope. That they were going to spend their day anticipating the next starry night, instead of drinking clear liquids and shoving enemas up their butthole?
I’ve been due for a scope since June 6th, which was my year post take-down assiversary. I however, promptly celebrated by eating cake and did not have a scope. July…no scope. August…no scope. September…no scope. You see where I’m going with this.
“The time has come”, the walrus said. I’m pretty sure walruses don’t have to get scopes, so he wasn’t talking about a camera up his big ol’ walrus butt.
I’m being a cry baby. I know I should go get my check up, and that I should waltz on in there and be all “Ok here’s my ass, shove a camera up there”.
BUT I DON’T WANNA.
I have successfully gone almost a year without getting ANYTHING shoved up my ass. That’s like a freaking Guinness book world record for IBD patients. A whole year without any fingers, tubes, camera, pills, NOTHING.
And now..my “winning” streak is ending. In our world…a year with no butt intrusion is winning. Take that Charlie Sheen.
So tomorrow, I shall do my stupid scope. Awake.
I KNOW. I vowed to NEVER ever do that again, but this is a pouchoscopy, which means its short and sweet…or so they tell me. And as much as I’d love to get knocked out an anesthetized tomorrow…in lieu of taking the whole day off, and making someone else take a whole day off to cart my doped up ass around, I’m putting on my big girl pants (well actually I’ll be taking them off), and going to go do this stupid thing awake.
Also…its not until 2:45pm. Also…I have to work the morning before.
So I will not be taking the recommended 2 enemas before hand. Why? Because I have a jpouch damn it. It’s practically a build in enema…nothing stays in there more than a few hours anyway. AND…because I’m a rule breaker. I do what I want.
Tonight I had my “go to” clean out meal…a double cheese burger meal, and I’m sure in a few hours I’ll be all kinds of cleaned out.
Secretly though I’m kind of hoping that while I’m sitting there on the table, staring horrified at my own ass as the camera gets closer and closer, that when the scope is all up there doing its thing, perhaps we’ll find the Hamburgler stuck up my ass.
I’m pretty sure that would complete my life.
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.
I am also making ones that say “I run for _____” and insert your person/place/thing on the line 🙂
If you’re interested in buying one, please donate and make a note, or just email me. Thanks guys!