I Get Scared Too. - Uncover Ostomy
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I Get Scared Too.

I think that since I’ve started writing this blog, I’ve painted a picture of myself as a typical young woman. Maybe a stronger-and-more-secure-than-normal type of woman… but that may not be entirely true.

Don’t get me wrong, and don’t take me as egotistical, but I am strong and secure. I’ve dealt with a lot of crap in my life and have taken it with a grain of salt. I haven’t caved in under pressure and I refuse to let someone disrespect me.

As strong and secure as I may be… I am still just girl. Like any normal girl, I am insecure about my body.

I’m not surprised I’m like this, to be honest, because of the torture my body endured while dealing with my Crohn’s disease. I’ve been grossly skinny, with bones sticking out everywhere, to overweight with a fat face of an alien thanks to medications. I’ve had thinning hair, pale skin, and dark circles under my eyes. I’ve spent a lot of time looking like I was going to die, so ultimately, my view of my own body is less than great. It has improved immensely since I’ve been healthy, as you can obviously tell since I can pose half naked for pictures haha.

Despite having those (I want to say normal) insecurities about my body, my ostomy is not one of them. I could basically just whip off my pants and show it to the world. I love talking about it and spreading awareness. I am not insecure about my ostomy.

99% of the time.

99% of the time I talk about it like the daily news. 99% of the time I force people to poke it. 99% of the time, I make a joke about it to large groups of people.

1% of the time, I wish I was wearing a huge, baggy sweatsuit.

This 1% of the time only occurs when I start seeing a new boy.

Obviously, I open up (right away, I might add) about my ostomy to a new boy. I explain what it is and how it works, if they haven’t already figured it out for themselves, and I basically make sure they understand. They need to understand it if they’re going to date me.

For some reason, once I’m past the point of explanation and thing begin to get more intimate, I get extremely awkward and weird when it comes to showing my ostomy to them.

I’ve always had the mantra that I am who I am and whoever doesn’t like it isn’t worth my time. That’s exactly what I think when I’m dating, and I know that if a guy can’t handle my ostomy, then he’s not for me.(Duh) It just sucks knowing there’s the small chance that the guy you’ve just fallen for can decide they don’t like you anymore because of it. Obviously I wouldn’t even want to date them by that point, but it’s sad to lose something you’ve grown to like.

I have been extremely fortunate in my life that I have never been in situation like that.  Every guy I’ve dated has been accepting of my ostomy whether or not they themselves were a decent guy. (The ostomy really doesn’t filter our the assholes like I hoped it would.. haha) My ostomy has never gotten in the way of anything that has to do with relationships nor, obviously, does it change who I am. But for some reason, I just hate letting them actually see my bag.

I now have a new boyfriend (finally, right?) named Rob, who is amazing. He’s basically just like me. We like a lot of the same things, we think alike in many ways, and we get along really well. He makes me laugh and smile and respects me.

He’s also made it very clear that he completely accepts my ostomy. He asks tons of questions so he can understand it, he giggles with me when it makes weird noises, and he keeps trying to look at it! He’s so accepting of my ostomy that even when I had the wonderful misfortunate of having a “major ostomy issue” (for the first time in, maybe 5 years?) he was perfectly fine with it. I was beyond embarrassed and thought that he would for sure dump me because it was too much. Instead, he pulled me close to him and proved to me it wasn’t a big deal.

It isn’t a big deal.

For someone as confident as I am with my ostomy, it really surprises me that I get like this around guys, especially with Rob. He’s proven that he doesn’t care what I have and that he likes me for me.

Maybe it’s some mixture of the already existing insecurities about my body tied to the fear of losing someone I really like. Regardless of why, I know it needs to stop.

Eventually I know I will get over it.

It’s just something, like every ostomate, that I have to get used to.

Jessica Grossman
  • Dana
    Posted at 19:47h, 18 July

    Thanks so much for this. I am fortunate to have a completely accepting, wonderful husband, but I did not have my ostomy when we married. He went through my illness with me and was my nurse after my long hospital stay and surgery. I wish I was so forward with exposing my ostomy; thank you for being such a courageous example.

  • Beth
    Posted at 19:56h, 18 July

    Thank you so much for postig this!! it is EXACTLY how i feel, but the only i difference is i broke up with my fiancee who was completely fine with all my health problems, including my ileostomy. so now, i'm afraid that whenever i meet someone to date (whenever that will be 🙂 ) that i'll be freaking out just like you did. i went thru the same experiences with my body since i was 13, now 34, and taking all the comments i got and pushing thru them. plus, all the physical looking changes too, from super skinny to big and fat b/c of meds and being sick. i've gone thru so much crap too; sorry to say this but it's nice to hear from someone who's shared the same thing–not glad you went thru it!. since being a very shy 13 yr old, i've become i very confident and extroverted female. and dealing with my illness, and having to cut some negative people out of my life, has brought me to this point. Yes, i never wanted a permanent one, had 3 previous temporary ileostomies, and i fought tooth and nail not to get one. but it got to the point that within a year i was in the hospital either sick every month or having outpatient surgery. i finally got my 3rd blockage and my only choices i was told by my surgeon was to die a very painful death or to get a permanent ileostomy. i had had so many operations of removing my entire colon plus so much of my ileostomy that they couldn't take any more intestine out. after a year of having it (got it oct 2009) i started to get comfortable with it. now, i go to an ostomy group and tell a lot of people i have it; i don't care at this point. but unlike you i don't show it very much; if someone asked though iwould with no problem. i just don't offer. but i'm petrified when a man comes into my life again whento tell him about it (first date?) and to let him see it. i've always had normal girl issues with my body, but this is just different. and of course i know to that if he can't accept it then he's not worth it, but that will be very hard if that happens to me. so thank you for sharing your story. It meant more to me than you could know!! glad you're with that special someone!

  • Anita
    Posted at 20:50h, 18 July

    I was almost three years into my second marriage when I had to have my ileostomy. My husband wasn't the least bit bothered by it because, as he said, "I've gutted a lot of fish." Unfortunately, his whole purpose in life seemed to be to play the role of caretaker, so as long as I was sick we were basically ok, but once I got well enough to be an equal partner everything went south. He became so angry at not being able to run the lives of my kids and me the way he had before that I finally divorced him.

    Four weeks after we separated, a new man showed up at our spiritual center. I was just starting my second divorce from another angry control freak, and was light years away from even thinking about the possibility of eventually dating… But there was something about William that had me riveted from the first second I heard his voice. We talked, he was engaged, I was a basket case, and that was that as far as I could tell. We became friends over the next four months, during which time my not-yet ex tried to stop it. The most outrageous thing he tried was to tell William that I am "horribly disfigured and scarred" (not true!!) , but which still had no effect on William's falling in love with me. He broke up with his fiancee, we started dating, and 7 months later we were married.

    In the 4.5 yrs since our wedding my weight has gone from 155 to 180, and now back down to the mid-140s (I'm 5' 6") I have had other inflammatory issues that have caused some other serious (but not potentially fatal) health problems that have affected my ability to exercise. My main body issues haven't been around the bag per se, but the big abdominal scar and the weight gain: after two pregnancies I had not a single stretch mark, and because I was chronically underweight for years I had a perfectly flat stomach and was a size 6 at 120 lbs. Seven years post-surgery I'm back down to a size 10 and have an abdomen that to me looks like a little Ferengi head (Star Trek reference.). Fortunately for me, size 6 women scare William (he's afraid he's going to breathe on them and break them ;p) and his perception has always been that I have the body of a goddess (thank god, even though I don't get it at all.)

    We were interviewed for a new book by Brenda Elsagher, "It's Under the Covers and in the Bag", the first book about ostomates and sex. It's a great book full of stories just like this, about dating and intimacy issues.

    I'm rambling here, I guess my point is that unfortunately there are no guarantees, and it would be great if the bags could weed out the assholes. My second wasbund stole money from me, cheated on me 2 years before I had surgery, and was verbally and emotionally abusive to my older daughter and me, but was great with the fact of my ostomy.

    (The funny thing about William is that my bag doesn't bother him in the least, but he has a full upper plate of false teeth and it gives me the total heebie jeebies to see him with it out – in other words, I have way more of a problem with his false teeth out than he does with my bag!)

    If any of you are coming to the convention in Reno, Brenda has asked William and me to attend the Sexuality workshop, so I hope you consider attending that one.

    Good luck!

  • Ashley
    Posted at 22:11h, 18 July

    I have a temporary ostomy at the moment(Colon removed July 17, 2010). Waiting to have my J Pouch connected up, but there is always a chance that the Pouch won't work and the Bag will become permanent. Something I am hoping to avoid.

    I have always had Body Image issues. I have never really seen myself as good looking or particularly attractive. The Bag adds quite a bit of baggage on that. Yes, I am happy I am healthy, but sometimes the sacrifice really gets to me.

    I'm 23 now. I have never had a boyfriend or any of the firsts that go with it. (First kiss, ect.) This is mainly due to the fact that over the past 6 years I have been fighting with Sever Colitis and only had time for that and University. (I have been on Medical Leave for the past year and a half. Recovering from surgery and the ton of complications afterward.) In the past 1 1/2 years I have had more Specialists and Doctors see my junk then any potential lover.

    Yes, I could live with the bag permanently if I had to. I just do not think I would find a guy who is accepting. In my experience most men, at least the ones I have run into, are quite shallow. It is great to hear that some of you have found great ones. I have just not been so lucky.

    I am not complaining, per say, I am just stating facts in my life. If anything I can just be a career woman and adopt children if I want to be a mother.

  • Jo-Anna
    Posted at 03:02h, 19 July

    No matter how strong and brave a person is, there is always that small part of us that comes out every so often. It is normal and you can never stop it from appearing every so often. The key is to stay positive no matter what.
    I have had my ostomy for almost 9 years now and I have been married for almost 7. My husband is very supportive and the bag does not phase him BUT I still get shy or worried.."is it making too much noise?" is it getting in the way?" etc. Yes I buy sexy lingerie that holds the bag in place but there are those spontanous moments that I don't have them handy. I don't worry all the time but once in a while I am sad to admit it but I do worry.
    So Jessica, it is so normal and no matter how in love the both of you are or how long you are together, you will have a moment every once in a blue moon that you will wonder but that is just the way it is.

    Ashley, don't give up. You are young and you have to heal yourself 1st before you can be ready to give yourself to someone else. Once you start to feel more confident and secure you will start to attract men your way. Just give it some time. It will happen.

  • ghd
    Posted at 06:20h, 19 July

    (The funny thing about William is that my bag http://www.es-ghdplancha.net doesn't bother him in the least, but he has a full upper plate of false teeth and it gives me the total heebie jeebies to see him with it out – in other words, I have way more of a problem with his false teeth out than he does with my bag!)

  • ghd
    Posted at 06:22h, 19 July

    GHD Lisseur

  • Adam
    Posted at 15:08h, 19 July

    Our confidence wavers we're around someone we like because we fear rejection. The percentage of human beings that this happens to 99% of the time is probably, well, 99%.

    This 1% could be anything for anyone. It could be a past rejection (perhaps their fiancee left them), a past traumatic experience (abuse, violent crime that affected them), or something more superficial, like a back acne problem, a busted tooth, a varicose vein, a big dark scar on their thigh.

    Many people internalize these insecurities when possible and don't expose them for months into a relationship, because they either fear rejection or they are trying to move past it in a false reality that it won't affect their current relationship. But it always does at some point, 99% of the time.

    But your 1% is different, and in fact, in some ways it works in your favor. Your 1% is fairly obvious, it makes you unique and it's something you confidently explain and show to others openly and honestly. You even pose provocatively with it; people are drawn to confidence as many of them lack it themselves, and also someone who is both humble and good looking.

    As far as acceptance goes it really is "weeding out the weak", because if they can't accept the 1% that makes you feel most vulnerable, you won't possibly be happy even in the short term.

    Take it all in stride, it's all a learning experience, eventually you'll know exactly what you want in a man and from there the intimacy will only improve.

  • Anita Summers
    Posted at 15:20h, 19 July

    @Ashley, if you can, try to stay positive that a great guy who will love you for you is out there. I remember well when I was a teenager, wondering if I would ever fall in love and get married, centuries before my ostomy at age 46. ;p (That was a different time, the 60s and 70s, things were loosening up but there was still a lot more pressure for that than there is now I believe, plus all the Hollywood romance stuff was still going really strong then.) I have now been married three times and have been proposed to by a total of 6 men, 2 of them after my surgery. And it's not like I'm some classically gorgeous supermodel looking type of woman either! LOL

    I have never had a single moment's concern that my ostomy/bag is an issue for William, so I have to disagree with Jo-Anna on that. You may not ever be worried about that once you get into a relationship. My ex didn't care about it either; with neither of them was there ever the issue that they were more comfortable with it hidden. The only time I did that was when I was still using see-through bags early on, and then it was because I was the one who was squeamish about seeing everything.

    So I'm very gently wondering, Jo-Anna, do you cover your bag because you're uncomfortable with it? Do you just assume he would be ishy about seeing it during sex, or has there been a clear indication on his part that he prefers it covered? I'm just wondering if you're sensitive about this more than you really need to be? If it's an agreement you two have made due to mutual preference that's one thing, but if it's you assuming, it could be a big breakthrough to find out it's not that important to him.

    Self-esteem plays a big part in this – the more beautiful you feel inside and out, the more confidence you'll exude and people *will* pick up on that. (My son and I have a Facebook page called "BEaUty. Be you", about how true beauty isn't what society and the media say it is, but about self esteem and authentic self expression.)

    And like I said in my previous post, I struggle with my own body issues, but it's not so much related to the ostomy as it is to an ancient anorexia mentality. My problem was quickly going from a chronically malnourished size 6 to being a middle-aged, menopausal female who was suddenly fully absorbing nutrition. Being sick with so many inflammatory issues over the years that exercise has been difficult to impossible, I don't look the way I wish I did – although I'm now on the very low end of the weight range for women my age and height, and if I lose much more weight my husband will find me too skinny for his taste.

  • Karen
    Posted at 16:40h, 19 July

    I am the same – could not care less who knows about my bag (when i had it – beeen reconnected) – but i totally get it with a new guy – fantastic enjoy your lives !!!

  • Karen
    Posted at 16:41h, 19 July

    P.S. you are soooo gorgeous though and an inspiration – wish you could advertise over here in the UK!!

  • Kemicolon
    Posted at 06:03h, 24 July

    I absolutely have no right to post here, I do not have an Ostomy or anything, I just wanted to say that I have a huge amount of respect for ya. Just the way you speak about it is really uplifting. I just wanted to say it is awesome, and that Rob guy sounds pretty damn awesome. XD