13 Years of Different: Bag-Mitzvah Edition - Uncover Ostomy
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13 Years of Different: Bag-Mitzvah Edition

I was born and raised in the Jewish faith, so at the age of 13 I was given a Bat-Mitzvah. A Bar or Bat Mitzvah is supposed to symbolize the coming into adulthood of Jewish children, assuming that they suddenly know what it means to be a responsible member of society – yeah, I know – 13 seems a bit too young…but, hey, it’s a tradition from thousands and thousands of years ago, so who am I to say?

I still do remember that at the age of 13 I was too young to understand what adulthood even entailed. I still got upset over petty little drama from the girls at school calling me names, I was not old enough to get a job, and I obviously couldn’t drive a car. What is budgeting for? Why can’t I go to school in pyjamas? What does Life Insurance mean? (I’m still not too sure about that one….) I was in no way an adult, yet the faith believed that I, along with the rest of my young tribe, was mature enough to be considered an adult at 13.

While I don’t necessarily agree that 13 year-olds are ready to be thrust into adulthood to make life-altering decisions, I was unfortunately placed in that very situation. I was a 13 year old faced with one of the most important decisions I would make in my life. Only months after my Bat Mitzvah, I was admitted to the hospital for what would be the last time in a string of long stays over the course of 2 years.

On January 30th, 2003, I was told that I needed to choose between life with an ostomy or death.

 

13 years later, I am here. Alive. Healthy. And celebrating what my brother has accurately titled my “Bag-Mitzvah.” 

The last 13 years of my life have been eventful, to say the least. From learning how to manage an ostomy, to graduating high school, university, and grad school, losing my father, to dating idiots then finding the love of my life, and navigating career paths to end up where I am today, it’s been a process. A process I would never change.

Over the past 13 years I’ve learned a lot about myself and a lot about it means to be different. Yes, having an ostomy does make me different. You don’t have an ostomy like me? I can bet that you have something else that makes you different. Hell, most of us have things about us that make us different. Over the past 13 years I’ve been lucky enough to learn what it really means to be different and how to make the most of it. In celebration of 13 years of being different, I want to share 13 bits of… my… let’s call it “wisdom,” with you.

1. There is no better choice that you can make in your life than to accept yourself for who you are.

If there’s one thing you’ve heard me talk about over and over again, it’s acceptance – that’s because acceptance of myself and my ostomy was one of the greatest decisions I have ever made. It was also the second decision I made immediately after having decided on ostomy surgery in the first place. I knew that I had to have surgery, but I also knew that if I didn’t accept what was going to happen to my body, there was no point in having surgery at all. If I wasn’t going to be happy with myself, with my changed body, and my new life, there was no point living life at all. Having accepted my ostomy as part of who I am has given me the confidence to not only live my life, but to live it the way I want to live it. If there’s one thing you take from this whole post – do whatever it takes to get yourself to accept who you are.

2. Sometimes people won’t understand what your difference really is, and it’s up to you to educate them.

It is no one’s duty but your own to educate others about why you are different and how it affects your life. I know from experience that explaining the ostomy to people who were unaware allowed me to frame the conversation in a positive light. I was able to explain that the ostomy is a life saving surgery and that, without it, I would be dead. I can explain that it’s not gross, it is weird, but it’s me and I damn proud to be alive. If I left discovery up to these individuals on their own, who knows what they would have learned… have you seen the deep internet of the ostomy? It’s not pretty. It is up to you to frame the conversation.

Uncover Ostomy Not Always Fair

3. It’s ok if it takes time to accept yourself for who you are.

I decided right away that I was going to be ok with myself as soon as I woke up from surgery. That’s not the case for everyone. I have met many people who have suddenly woken up with an ostomy, having no clue what it was until a doctor explained the “thing on their abdomen” and who were more scared and upset more than they’ve ever been in their lives. I’ve also met people who knew they were having surgery, but still needed time to adjust. It is ok to take the time you need to love yourself. It doesn’t always happen over night and it’s not a race for who can get there first. Don’t get down on yourself because you’re not loving your difference the moment it appears. Just keep telling yourself how amazing you are – it’ll happen eventually.

4. It’s ok if there are still some days when you struggle with acceptance.

I have had my fair share of days when I struggle with my ostomy. Specifically, after having my stoma for 12 years, I found out that the intestine is twisted and I can’t pass much food – I haven’t eaten real food in almost a year and a half. The odd time I do try to eat real food and it hurts, it’s hard to accept that this is where I am right now. Not every day can be 100% and that’s ok. I just have to remember that I’m alive, healthy (otherwise), and just have to manage what I ingest. (That’s nothing new for a Crohnie, though!)

Uncover Ostomy Eating SO Much

Furthermore, sometimes I even struggle with accepting myself as a whole – forget the ostomy – just as a human being. I’m a girl who has had years of body issues thanks to steroids, sickness, and an overbearing grandmother. There are days when I look in the mirror and feel like a bloated puffy ball of skin and I hate it, but I suck it up and carry on with my day. The next day, when I look in the same mirror, I realize I was just being stupid. I’m a girl. It happens. (Thanks hormones.)

5. You may encounter people who can’t accept your difference – and that’s ok.

I am going to be honest and say that to my face I’ve never had anyone not accept me because of my ostomy. That could, in part (most part) be due to #1 & #2 above, but who knows if that’s for sure why. I’ve heard a bunch of stories from other ostomates who do accept their ostomy and themselves but still end up dealing with some assholes who can’t think outside of the bubble that they were raised in. The people who think less of you because of your difference? Fuck them. You don’t need them and they don’t deserve to have someone as awesome as you in their life. Besides, there are plenty of other friends to be made and boys/girls to date. Trust me.

6. You will most likely find someone (/many people) who thinks your difference makes you special (because it does.)

Once you weed your way past the jerks that are too ignorant to look beyond the bag, you’ll find yourself among some gems.  You’ll find friends who can laugh about the squeaks your bag makes when you’ve chewed too much gum (been there) and guys/girls who are too preoccupied with your gorgeous smile/bright eyes/sense of humour, etc., to pay it any attention at all. Sure, you may have to deal with some rude comments and mean snickers here and there from the assholes you do come across, but it’s worth it when you find your way to the person who worships you for everything you are. My fiancé treats me like gold because he loves everything about me – including my stubborness and my ostomy. It makes me who I am and that’s all he cares about.

7. Accept your difference but don’t let it define you.

I am not my ostomy. I have an ostomy. It has contributed to my life story. It has shaped the way I view life. It’s also forced me to adapt to how I do every day things. But I am not the girl with the ostomy. I am the girl who is happy living life, doing all the things she wants to do, and happens to be able to do that because the ostomy saved her life. I choose to define myself by many other pieces of my life – my interests, my goals, my accomplishments, my experiences – not just by the thing that specifically makes me different. I am deeper and more complex than just a girl with a poopbag.

8. Don’t let your different stop you from doing what you want to do (unless Dr. advised.)

Yeah, ok, so if a doctor advises you not to do something because of your difference, like, say, not to eat peanuts because you’re deathly allergic or not to see 3D movies because you are prone to seizures… don’t do that. But most differences, whatever they may be, don’t need to get in the way of you doing what you want to do. I have been able to swim, dance, and workout all with a bag and no problem. I model, I act, and I run 2 companies – with a bag, too! Having an ostomy has literally not stopped me from doing anything – except going to the bathroom like a normal person. (I’m ok with that.)

Uncover Ostomy I Do What I Want

9. It’s ok to talk about your difference.

Yes. Please. Talk about it! If you don’t talk about it, who will? How will the public learn to accept you for who you are if you don’t open up about yourself? This mentality is why I started Uncover Ostomy. 

10. It’s ok not to talk about your difference.

Ok, so I talk about my ostomy a lot. Not everyone is like me and that’s totally ok. There are enough of us out there now talking about ostomies (yay), and other differences. If you feel that it makes more sense for you to keep it to yourself then that’s your choice and it’s the right one.

11. Your difference is not the only one out there – make sure you accept others as you want to be accepted.

You can’t expect people to accept you if you don’t accept them too. I was taught very young that “everyone has something” and I’m not the only one with a difference. Your difference might be completely different than mine, but that doesn’t make mine more important, more noteworthy, or more special. We are all equal in this place called life. Let’s treat each other as such.

12. Your difference is weird and that’s what makes you so awesome.

Ostomies are weird as hell. Like, I have a piece of my intestine sticking out my stomach. How is that not weird?! Being weird is awesome and unique and it’s something we should all embrace.

Uncover-Ostomy-Weird-different

13. There is only 1 you.

There wasn’t anyone like you before and there won’t be anyone like you again. Take advantage of that. Live it. Love it. Embrace it. 

——-

It’s amazing what a span of 13 years can do.

In the first 13 years of my life, I grew up to make one of the best decisions of my life. In the past 13 years of my life, I’ve learned valuable life lessons that will help me make the next few important decisions that life will bring. I can only imagine what will happen over the next 13.

L’Chaim.

Jessica Grossman
info@uncoverostomy.org
9 Comments
  • Scott Lederman
    Posted at 11:30h, 30 January Reply

    Mazel-Bag to you!. You are a great example for others that just because we poop in the front doesn’t mean we are not still desirable and normal (well normal is the larger sense of being alive and making a lot of mistakes in life). But getting an ostomy to extend your life, in a no brainer. If I didn’t get my ostomy almost 40 years ago I would never have seen my children and now their children, or lived with someone I love and want to grow old with. So as hard as it was, it was worth it. Even when my appliance explodes in the middle of the night and I am flipping out. Hey it is what it is.

  • Stephanie Horgan
    Posted at 12:03h, 30 January Reply

    As a fellow ostomate and therapist for people with chronic illnesses, thanks for being so honest and open about your experiences! We need more people like you who inspire and encourage others!

  • Yvonne V Hernandez
    Posted at 16:30h, 30 January Reply

    Today my son celebrates his 34th birthday. He too had his ostomy at age 13, 21 years ago. I Thank God for his life everyday. I am appreciative of the medical community. Keep blogging this was great.

  • Tina Kinney
    Posted at 23:03h, 30 January Reply

    I also have had my iliostomy for 13 years since 03-2003. During the last 13 years God has blessed me with a little boy now 7. Thank you for sharing ! I too have had a very positive attitude since day 1. I had such a peace knowing my life would so much better with the iliostomy and I have chosen to share my story with many.

  • Rvk
    Posted at 22:28h, 10 March Reply

    I chose my permanent ileostomy last year after 15 years of suffering from Ulcerative Colitis. Best decision I ever made. My life has never been better!

  • maryannpressman
    Posted at 14:52h, 08 July Reply

    thank you for your article my husband had to have a ostomy and your article really helped us both thank you

  • suzana renee
    Posted at 22:55h, 13 July Reply

    I recently got my first ileostomy 32 years after having crohns. May 12, 2016 I had a new way to poop forever. Things were going well and I was trying different bags, hit my six week post surgery date and boom, July 5, SBO! My guts decided to twist and cut off blood supply. Nada in the bag for a day, even with miralax. That’s a problem, houston. So Back to hospital, now a second ileostomy, new stoma (this one is not as high as the original and I’m hoping it does not get too small or invert.) New incision line (again)…but a week in the hospital and now I am home recuperating again. Drinking lots of electrolyte laden beverages and low residue diet.
    I am just going to take it easy again. Looking forward to when walking does not hurt and I can resume my normal activities. I have three great kids to play with and I will be putting off my training for the 5k obstacle courses until next year…apparently…but it’s all good. Maybe this second time I really can sit and listen and do less and attempt to relax, get zen. It’s hard for type A go go go people to not be going to the gym, training, etc. I’m learning what quiet is…at least right now.

  • This Campaign Is Uncovering A Different View Of Ostomies | OstomyConnection
    Posted at 16:14h, 18 September Reply

    […] You can help change negative perceptions surrounding ostomy surgery by sharing Jessica’s post, “13 years later, I am here. Alive. Healthy. And celebrating what my brother has accurately titled my …” […]

  • suzana renee
    Posted at 12:33h, 24 March Reply

    Jess, thank you again for being such an awesome inspiration . I created two Facebook related groups because of your initiative and ideology. We do run along similar lines. Most people who come across my public crohns-ostomy-warrior-woman Facebook blog page are really supportive. Of course there are some that have had odd things to say, especially a woman who herself has a bag. It seems she is not comfortable looking at other people’s bags, much less her own, so why do I feel the need to put the picture of myself with the bag out there…something along those lines. I very simply replied to the effect, if you don’t like it, don’t look. Goes for my ink and my bag. Now people have two reasons to stare….Bring it!!

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