The Real Me

One of the consequences of Crohn’s disease has been my constantly shifting body. Throughout my entire adult life, there have been fleeting moments of control. In the rare occasions where I pieced together months of continuity, I still lived with the fear that at any minute the hard work I invested into keeping myself healthy would go to waste. The cycle of flare-ups took a toll on my body and mind that left me thinking, “Why do I even bother?”

My self-image has too often taken a hit because I have never had a sense of myself. I have been sick my entire adult life. I don’t know if my body type is the lean, skinny teenager I was before my diagnosis, or the slightly curvier woman I became during my last year on Remicade. I don’t know if the reality of my twenties will creep up as I continue my life disease-free. Whatever the case turns out to be, I can take comfort knowing that the cycle of dead ends, ends now. For once in my life, I have control.

I have told myself that as my body changes I am going to rid my closet of my old “sick” clothes. Last week I said goodbye to jeans I had from high school, not only because they are tiny, but also because they are in no way a representation of whom I am now. I also gave away the size 10 jeans I wore when I was on steroids. I know I could be that size one day, but having them in my closet just reminds me of where I was in my life when I wore them. I know that never again in my life will my weight fluctuations be dramatic and unhealthy. If nature wills me to progress to a larger size, it will be gradual and un-dramatic.

In the past it was always a struggle for me to appreciate the process of gaining weight when it meant I was healthy. Because I have never really known what my natural size is, I have often thought that having no ass and looking “sick” was how I was supposed to look. Every time I gained weight it felt like once again I was being punished. I have only recently come to understand that I wasn’t mad to be gaining weight. I was mad that the sense of self I had attained from being a certain size for more than a month was being taken away once again. The loss of that certainty, of knowing who I was and what looked good on my body--losing that was what made me angry.

As I regain control of my life, I will also regain control of my body. As my appearance changes I will understand that it is only because nature is taking its course. I have reached a point in my recovery where I am imagining the excitement ahead and I have allowed myself to consider that this happiness is permanent. Everything I embark on from now on is only limited by me. If I fail, it is because I did not try hard enough, not because Crohn’s stopped me. This is both the most frightening and amazing thought I can imagine.

This entry veered off what I was trying to say about body image but maybe that's a good thing. I do want to say that today while being with my nephew I felt a sense of happiness I haven’t felt in a long time. Each of his giggles made me cognizant of the fact that for the first time since surgery I could lift him into the air with ease. I was happy, too, because I knew he would never know a day when I wasn’t present at a birthday, graduation, or swim meet. Maybe one day when he is older I will offer stories of his first months of life and how they coincided with my own new beginnings but for now he will know this version of his Aunt. He will know me as a presence in his life because my illness will never relegate me to my previous life of emotionlessly moving through the days just to pass the time.

Finally. I am present. And it feels good.


Hot Mess Express

I love the phrase "hot mess express". It's what my friend Jill says when trying to describe her actions from a night of hard partying.

People often ask me if I'm allowed to do certain things with an ostomy. Aside from worming on my stomach with a full bag of crap on me, I'd say I can do anything. Even then, I could do it, It'd just be messy. I can drink beer, eat spicy food, work out at the gym, and do all the other normal things twenty-somethings do.

Yesterday I drank alcohol for the first time since surgery. I'm not the biggest drinker, but if I commit to going out and straightening my hair, you can bet I'm going to knock back a few. It's pretty much inevitable if you're single and in your twenties that you are going to drink from time to time and every once in a while you're gonna get really hammered. Luckily, I have drinking with an ostomy down to a science.

I've determined that it's all about quantity. If I'm in for a night of drinking, it's best to stick with beverages that pack more alcohol into a smaller amount of liquid. This often leaves me with guys thinking I'm such a badass chick for wanting a shot of Jameson. In reality, I want to feel the effect of tying on a buzz as to keep up with my peers, but I don't want to drink mass quantities of beer because I know it's going to produce more output from my ostomy. I actually don't mind this kind of drinking because I usually end up sipping on a quality beer while I take a shot here or there.

There's also the more infrequent occasions where I'm drinking for a REALLY long time. This happens at Phillies tailgates or St. Patty's day. I'll be honest, there have been a few 8-12 hour drinking sessions in the past year. These are difficult, however, because if I take shots I'll be passed out in a corner. Also, aside from the occasions I mentioned, I don't ever PLAN for a 12 hour drinking session. Sometimes they just...happen. If I do know ahead of time it's going to be a long session I just drink beer knowing that I'm gonna attend to my stoma frequently, but that I'll be able to get through the night without passing out in a bathroom.

Then there's the wine drunk. That was me last night. I had three classes of wine and was buzzed...okay I was drunk. And I was drinking red wine which totally travels right through your body. I think regardless of having a colon or not, red wine has this effect. Anyway, wine tends to get me through the night pretty nicely because after one glass my cheeks are already rosy. Again, I don't need as much quantity like I would drinking beer.

My point of this post? I guess that I am normal. And I hope that anyone my age who stumbles upon my blog realizes that your activities won't be affected at all by having an ostomy. Even in those occasions that I'm nervous about attending to my bag, say, in a parking lot of drunk Phillies fans or in a plane thousands of feet above the ground, it's never significantly stressful. In the beginning I would say the key is to be prepared because peace of mind helps you relax and enjoy yourself. I've had my bag leak in a number of places but it's never noticeable, and despite the fact that you would think a bag of crap smells and bleeds through your clothes, it's really not that dramatic (for me anyway).

Right now, I still carry small things with me if I go out to a bar--an emergency kit with the essentials. But I don't always if I'm close to home and comfortable. I can already predict that in a matter of months I will be one of those ostomates who leaves the house with only their wallet, cell phone, and keys. I'm looking forward to the coming months where I have a lot of social events planned, many of them with alcohol playing a minor role. I know that the more I venture out into the world, the more comfortable I will be.

There's so much to look forward to soon; concerts, a trip to New Orleans, and my best friends wedding. And I may or may not be enjoying a glass of wine, or three, at any of these events. Stay tuned!


Phantom Rectum

Got your attention with that blog title, didn't I? Well, my non-Crohn's afflicted readers (which is a lot of you) will certainly be educated a bit on this topic.

I don't know when I first came across the term 'phantom rectum' but I know it was years ago, back when I had my colostomy in '05. Basically, phantom rectum is exactly as it sounds; pain in the area where your rectum used to be, or an uncomfortable feeling of urgency that one experienced BEFORE they had their rectum removed. JEEZE. As if needing your rectum removed isn't bad enough, now people have to still feel like it's there?

I admit I did think about this before surgery because it seemed to be a topic discussed more than you would think on ostomy message boards. I wasn't overly concerned with it, though.

I am not sure what I am feeling is phantom rectum but I have certainly had a couple of moments in the past month where I thought my rectum was still there, but it was usually because the activity I was doing used to illicit urgency pre-surgery.

For instance, pre-surgery, every effing time I stood up I would experience urgency which was usually followed by something coming out of my ass whether it was blood, mucous, poo, or pieces of food (sorry people). So, every once in a while I'll stand up and feel that rush towards my rectum but nothing happens! It's a miracle.

I feel like my shopping experiences trigger these feelings of phantom rectum, too. Shopping was always such a terrible experience because mentally I knew there's not always readily available bathrooms. And if there were, I'd have to interrupt my excursion to find it and once I got there and back I was so damn frustrated I didn't want to shop anymore. I swear anytime I'd walk into a Target or a mall my rectum would wake up and say, "Not so fast".

Today I was going out with my mom and as I stood up I felt sick. It was a combination of that sensation in my rear end and me thinking, "Do I really wanna go out?" For one TINY second I forgot that I could, indeed, leave the house for as long as I wanted and I would be fine.

In conclusion, I don't know if what I am experiencing is phantom rectum because it's not painful like most describe. It's nothing I need pain killers for or something I feel for more than a split second. I know that some of is probably a result of my brain being conditioned to expect a rush of matter towards my butt every single time I stand up.

The greatest part in all of this is knowing that no matter what discomfort I may experience for a few seconds, I know that it is only just that--a few seconds. In the context of Crohn's, a few seconds is nothing. I can deal with a few seconds. Bring it on!

Me and Braden, my nephew, who I spent my days with :


One Month Post-Proctocolectomy

I think I've finally reached the point where I no longer see myself as "recovering from surgery". It's been a month. I'm finally off all pain meds and the only medicine I have to take is my multi-vitamin every day. How amazing is that? I don't think I look gaunt or pale or hunched over. The 10 pounds I lost from surgery have almost all come back on merely from resuming a normal diet...and maybe indulging just a little bit in the wonderful food every one seems to want to shove down my throat now. I'm also comfortably driving again. I don't have to do a little shimmy to get into my car and I can harshly sit down on my ass with all of my weight and not be in pain. And, lastly, my butt wound has closed up. Sorry people but this was significant because I had to pack my wound to absorb drainage because it didn't close on its own after surgery. I know this seems stupid but it's just one more thing I no longer have to worry about now.

In other news, I completely finished my graduate school applications for Temple and La Salle. In the beginning I was much more ambitious and not completely in reality. After thinking about it I realized these are the only two schools I want to attend and can afford. I didn't contact any of my references for recommendations until last week and the response I got was amazing. Sometimes I get a little bit frustrated that I don't have much work experience but after reading everyones email replies it was a little boost of confidence that I need right now. Not that I revealed everything I've been through these two years to my references, but it's nice to hear empathy.

Just a little update. More boring updates to come.