Your ostomy is not the end of the world

This week I went on some ostomy message boards and forums because I am interested in starting some kind of support group in the Philly area that involves more than 70 year olds. I know there are young people out there who have an ostomy. Even the support groups for Crohn's and Colitis seem to have dwindled in the recent years. Certainly that kind of support group would have a bigger audience than simply ruling out people with ostomies. And I think I could be an example to others suffering from IBD that if you are considering going down the route I chose, it's not the end of the world.

I guess I get really discouraged with all of the negative postings on the internet. I understand that the likelihood of finding blogs like mine are fewer because the people turning to the internet are probably ones who don't have much support. And with an ostomy it's not like most people even know someone else who has one that they could talk to. Even if there is such a person in their social sphere, they may not even be aware of it.

I have become a firm believer in the notion that the rewards you get from your world are a direct result of what you are projecting from within. Right after surgery I was going out a lot socially and for the first time in years I felt confident and happy because I was healthy. It was pretty amazing how many new friends I made and the attention I got from boys, which is something I never really experienced in my life. I knew I was attracting people who were genuinely interested in talking to me because that's exactly how my mind worked when I would go out. I just wanted human interaction again. I wanted to feel the youth that I lost and the two precious years of my twenties that I spent sick.

I've also come to understand, through reading the sad stories of others with ostomies who haven't adjusted well, that I need to chose to project positivity when it comes to my ileostomy. Sure, I am allowed to bitch about a leaky appliance application or the fact that I can't wear a skin tight dress that I tried on the other day, but everyone around me knows that I regard my ostomy as something that brought me back to life. Without it, I am not sure where I would be.

If I explain my ostomy to a potential boyfriend or a curious friend, how are they supposed to accept it and understand it if I feel it is a horrible curse that is keeping me from being happy? The more I have read stories about people being "rejected" because of their ostomy, the more I understand this concept. Of course they are going to be rejected if they themselves can not accept it. This concept is universal when it comes to self-esteem. The bottom line is, until you are happy with yourself, ostomy or not, you will never attract the right person.

I certainly understand that everyone absorbs change differently. I know that having an ostomy isn't always a voluntary decision for some. Sometimes people go in for surgery and wake up with an ostomy they didn't know they were going to have. I feel almost fortunate that I have had a decade of misery with Crohn's because I can make a clear distinction between my life with Crohn's and this new, post-surgery life. For me, the differences are noticeable and therefore I can say with certainty that my ostomy has changed my life for the better. And maybe this is the factor that has made me able to adjust and cope. It just makes me sad to hear that some people feel crippled because of their ostomy.

The only advice I can offer is that life is so precious and uncertain. Whenever I start feeling the slightest bit of self-pity I just think about how much worse it could be. I've known too many people in their twenties who have been affected by heavy issues that have either taken their lives or changed them to an extent I can not even imagine. I feel fortunate to be alive and healthy even if it means I am just a little bit different than those around me.

Now to enjoy this beautiful day.


"That day, for no particular reason, I decided to go for a little run."

I find a lot of happiness these days with the simplest things. When I started this blog I wrote about how much running meant to me and the frustrations associated with losing control of my ability to run freely. In retrospect, even before things got really bad in the beginning of ’09, I look at how much my disease affected my ability to run and it is staggering. I made incredible adjustments because running was the last thing I didn’t want to lose control of. I think I convinced myself that as long as I could run, Crohn’s wasn’t winning.

I think about those times now because I have gotten back into an exercise routine. The freedom I feel when running and walking now have given me a sense of comfort I have not felt since ’09 when I was in the best shape of my life. Even though it is going to take a lot of time and dedication to get myself back there, I am in no hurry because I know I have just that—time. I used to treat my good days like a currency that had to be used up before it ran out, but now I know that my supply is unlimited as long as I continue to treat my body well.

I also think about these times because I have triggers of these memories all around me. Strangely enough, it is not the scars on my belly or the sight of my ostomy that remind me of the distance I have traveled. Instead, it comes when I see certain landmarks or run the same paths that were too often previously abandoned at the wrath of my illness.

When I pass by the apartment my sister used to live, I remember how calculated my routes were when I ran through my neighborhood. Her apartment was the furthest I could reach and marked the spot where I would begin to run back to my house. I carried her apartment key in my shoe and a spare change of clothes at her place just in case I experienced urgency or actually had an accident—and yes, that happened many times. Too many.

When I pass by a particular wawa from my route or the local golf course shop I remember the times I had to stop there, too. I think to myself, How the hell did I manage to live this way before? That part of my life seems distant at times but the emotions are very much present.

Now when I run through the park and under the overpasses that mark the frequent places where city and nature briefly intersect, I remember how many times I had to call someone to come pick me up because I knew even if I turned around in that moment I would never make it back to my car. I think about how many times I would sit in those dirt parking lots waiting impatiently, all while hoping the next car that came around the bend was my reprieve.

And now, I can go as I please. I can run and walk as many miles as I want without thinking about the journey back. My routine is unplanned and I can chose to push myself harder if it feels right. When I take my typical routes I am thinking of nothing but how good the song on my ipod is or how hot the guy is that just ran by me. And in these times I remain contemplative. I am aware of how easy it is and I love that at any given moment my biggest concern while running can be my shoe that has just come untied.

Sometimes I think to myself, Will there ever be a day when these sights and routines don’t remind me of Crohn’s? But, the more distance that builds between this new me and my old self, the more I realize that I always want to remember. It’s funny that I let certain dates, like my diagnosis anniversary, occasionally slip by only to be remembered a few days later, but yet I will always think about the day I was diagnosed every time I enter the building where I had my first colonoscopy and was told I had IBD.

I guess what I am trying to say is that although I have doubts sometimes, I don’t want to ever forget what it felt like to be ill. These places I encounter on my runs are just as much my battle wounds as the scars on my body. I think my memories of running back then are a testament to my belief that in midst of a crisis, people have a super-human ability to adapt. When everything around you is chaos, there are certain pillars of your life that you need to remain standing to keep yourself afloat. And for me, I made ridiculous sacrifices to run. Even when I had to abandon it because of my physical deterioration, it was still very much a part of my decision to have surgery because I knew that I didn’t want to live a life where I was forcefully stripped of something that made me feel so great.

Who knows what time and life will do to alter how I contemplate the past couple years. Maybe there will be a day when I run through the park and those memories don’t come rushing back. For now I am just glad they are there because they only validate each decision I made to regain my life.

In many ways running has become a metaphor for my present life. I've pushed through the hard part where I thought I couldn't go on anymore and now I am cruising, incredibly focused, and enjoying the pace. I am just happy that I have great family and friends to relish in the journey with me because I know they feel the emotions just as much as I do.


My Momma

In honor of today and what it means I am going to write about my mom.

I have a special relationship with my mom because she too has Crohn's disease. My mom was diagnosed just three years before I was, in her 40's. At the time my mom got sick, I was very much caught up in my own world and didn't understand what she was going through. I knew she was sick and losing weight but looking back, it didn't affect me at all. People would often ask, "How is your mom feeling?" and when I heard those words it was almost surprising because I didn't even realize there was a reason for their concern. She never let my siblings or dad know how bad it was. Thankfully, once my mom got the proper diagnosis, she was put on a medicine called Asacol that she responded to wonderfully. Since her initial flare up in 1998, she hasn't had any major problems.

Because of this, my mom understands my illness more than anyone else. Even though she is healthy by Crohn's standards, she will never be normal again. Even though our experiences with Crohn's have been drastically different, we still are still bonded because of our diseases.

My mothers' dedication and selflessness towards helping me heal remain remarkable. There is no sacrifice she wouldn't make for me. The fact that my mom would work a twelve hour shift taking care of people who were dying, only to come home in the morning and take care of me before taking care of her own needs--well that's just pretty damn amazing. My mom has packed stomach wounds when they were infected, bathed me when I didn't have the strength to do it on my own, dressed me when I couldn't even bend down to the floor, brushed my hair, emptied ostomy bags, cried with me, emptied drains, packed wounds in my behind, injected me with medicines, sat with me through infusions, called doctors and begged for pain meds...I could go on and on...

I also know my mom carries the burden of knowing her genetics are what "gave" me Crohn's. I know she has often felt angry that she had to watch me go through so many terrible flare ups while her disease has been in remission. With each of my bad days she felt bad that I was the one in pain and not her. Like any parent, she wanted to take the pain away for me. I know her emotional pain was equally piercing to any physical pain I felt.

On a day like today I am even more grateful for my mom because I am aware of friends who no longer have their mom around. I am thankful to know there is one person in the world who will always be there for me in every capacity. I know from this point forward there is nothing I can't overcome as long as I have my mom supporting me.

Regardless of any guilt my mom could ever feel, I also know there are qualities of greatness inherent in my her that run through my veins, too. If the only way I were to receive her great qualities came along with the burden of Crohn's, then I am completely okay with that because she is an amazing woman.

Happy Mothers Day to all the mommas.


Stevie gets rejected, Part I

I wasn't going to write about this but I realized I'd already gone so far as to share some details about my personal dating experiences so I figured I should follow up on it. Unfortunately this entry might backtrack a bit on the optimism of my previous post, as my wound is still fairly fresh. Yes, last Saturday I decided to have "the talk" with a guy I had been dating for about two months. Seeing as how he turned out to be a complete asshole, I don't mind talking about it openly.

One of the negative aspects of having an ostomy is that I sometimes feel the need to date down. I'm sure even without it I would probably do this as a result of the normal insecurities of being a woman. But, I think I put my blinders on and date guys that have some major deficiency in their persona because I feel like this will make up for the fact that I have an ostomy. Like somehow they will overlook it because they know I'm otherwise too good for them.

But then I met said boy I mentioned in the first paragraph. All was going well for a while. I honestly didn't expect him to actually call me when I gave him my number because he was attractive, had ambition, and had a good personality. Usually I don't get all three. To my surprise we went out the first time and things went smoothly. He opened doors, paid for everything, and did a lot of talking about all the things he thought we would have fun doing together. So we went out again a week later and then started doing more lame things together more frequently; cooking, walking outside, etc etc.

Now last year I had gotten to this point with someone and then dropped the bomb on him that I needed to talk to him about something important. I more-so dropped the bomb via phone because I wanted to make sure I wouldn't chicken out and I would actually tell him. It wasn't exactly my idea way of doing it but I think it was okay because of what I was going through and how hard i knew it would be to initiate that conversation on my own. This particular boy decided that whatever "important" thing I had to talk to him about was too serious and I basically never spoke to him again even though he assured me we could talk about it soon. Blah. Whatever. Even though that was a fucked up thing to do, I am glad that in some way he recognized that whatever it is I had to say was too serious for what he expected out of our relationship.

Okay, so back to current boy (I am calling them all boys because they are certainly not men). So I made plans to meet up with him and drop the ostomy bomb. I was quite nervous all week but after realizing I was prepared to speak about it in the most positive, confident way, I knew there was no reason to worry. I just had to be honest. And I was. I was actually quite proud of myself, although it did feel quite like an out of body experience because I was way too composed for my normal nature. But after talking about it, he changed completely. At first I thought he was just shocked and didn't know what to say so I overlooked it. He was certainly sympathetic but something wasn't right. I was glad we had no plans to hang out for the rest of the night because honestly I just wanted him to be able to think about it and process everything without me there. I pretty much left the ball in his court and told him that regardless of how he felt, I just wanted him to feel comfortable telling me what he really thought, even if that meant he didn't want to date me anymore. When we left, he said he would call me the next day.

And that was the last I spoke to him. No phone call, no douche bag text message rejecting me. NOTHING. When I thought about it after I left him, the thought didn't cross my mind that I would never hear from him again. I knew there was a possibility he would have trouble grasping what I had said, but I still figured that our time together had been worth the decency and respect of a fucking phone call. I think that's the least someone deserves when they pour their heart out to you and share a huge piece of their life. He knew about my past with Crohn's and he overlooked that. Yet somehow he couldn't overlook the ostomy, nor feel like he needed to give some recognition of the emotions involved in opening up to him. What. An. Asshole.

I was certainly upset about it this week. I knew he wasn't someone I connected with on some ridiculous level and I wasn't ruined by the whole experience. But it certainly left me sad and wondering if my friends are all just lying to me when they tell me my ostomy "isn't a big deal". I mean I think about the fact that this boy couldn't even make any contact with me at all and I can't help but think it actually is a big deal, if just that knowledge alone was enough to make him never want to speak to me again. It has also forced me to question that I may have to settle for something less than I normally would deserve. Maybe I will never be able to have it all, because I have an ostomy. It's a sad thought to consider.

I think one more week of hearing the "fuck him if it's a big deal to him" encouragements from my friends and I'll be back on track. It just sucks to feel vulnerable. That's how I feel right now and I don't like it one bit.

Oh well, here's to the Phillies playing a good Sunday night game and the Flyers pulling their shit together and winning tomorrow night. Those are the only men I should focus on for a while. Happy May!