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Recap and Looking Forward

This is one of those catching you up, what the heck has Christy been up to sorts of posts.

Looking Back
I think of 2015 as the year of perseverance. It was a mix of really amazing opportunities, adventures of all sorts and some moments that were super challenging.

Bit of a Bump
2015 started out with a surgery to have my gallbladder removed by a new-to-me surgeon. Up until then I had been really spoiled with having one surgeon who did all my work for the last twenty- ish years. Thankfully my Gastro referred a very skilled person and all went well.

Got Awesome
Next came the 2015 #IBDSocialCircle. This was my first IBD conference where I would get to meet other advocates. I was super excited and didn’t know quite what to expect. I knew Sara Ringer would be there and that was it. I met the very nicest IBD Advocates, did my best to live tweet an IBD Social Circle Round Table, got a sneak peek at upcoming endeavors designed to improve the lives of patients and collaborate with fellow advocates during an all day meeting.  I was in Gastro Lady Heaven!

Got Exciting
As soon as I got home from the IBD Conference Where my Wildest IBD Dreams Came True – I dove head first into buying a house and moving.  I seriously put my luggage and IBD Conference swag into a box, taped it shut and kept going until June.

Challenging
So we have this house and are pretty excited to have a cozy little place just right for us where we could be Zen with our offspring.  We went in knowing there was some yard work and painting to do. And we were cool with that, as long as the house was sound. It would be a fun adventure. That notion lasted for about a minute before the peace and opportunity for transformation that was our house began to resemble that 1986 movie, Money Pit, with Tom Hanks and Shelley Long. Repairs – bugs- wilderness- rodents- pluming – broken major appliance- tenting and gassing, multiple roof issues, water damage, interior wall repairs and on. So far home ownership has been one adventure after another.

Secondary Disease
So I have Meniere’s Disease. It’s not fun. I did a post about it to give you an idea. About a month after we moved into our home, it decided to be really active. Meniere’s is quite ambushy and took some serious trial and error to figure out how to get some relief. I would like to tell you things are better. They just aren’t. I take sedating meds which somewhat calm down my ears before doing fun things and I keep food down because of sublingual anti nausea meds. Thanks to continuous tinnitus, I don’t have silence anymore. My hearing drops out for short periods of time in one and sometimes both ears frequently enough for me to mention it to you. It’s an ongoing process.

Crohn’s Disease
I see my Gastro on the regular, like ya do, and he reminds me it’s been a minute since we’ve done a pill cam. So I do that and it’s super amazing because the geek in me loves all that medical science working its way through. Plus it was one of the new systems that don’t use all the stickers but a large sensor plate worn belt style. (Future post about that) My pictures came out clean, my blood work came back lovely. The words ‘It looks like you are in REMISSION.’ were spoken. My Gastro brings up the idea of going off meds. And so that’s what we do. I am still amazed and really grateful about every bit of this last paragraph.

Busy
Otherwise known as ‘Mamas going back to school!’ With both kids stable and at their school during the day, it was time for me to go back and work on my education. I was super excited and optimistic that this time it would all work out. I was older, my health was more stable and with that pesky gall bladder out and an Ostomy on my team this go around, college was really going to happen for me. And it did. But the start wasn’t as smooth as I would have hoped. Those credits I managed to earn twenty years ago didn’t transfer. So I was starting over from scratch. At first I was pretty bummed but then I decided it would be okay. After all, I’m going back to gain skills to be an even better advocate. Psychology, public speaking, writing and more will help me be better at what I enjoy.  As long as I keep my goals up front, I can’t be bummed about that.

Recovery aka Holidays
Holidays marked the end of my first term back in school. I was proud to earn a solid B in Psychology, consistently work on home repairs with The Husband, and have time to relax with festive tree trimming and cookie making. Much needed time off with my wee family and Grandparents down for a visit was the perfect ending to a rollercoaster year.

Looking Forward to 2016
*First of all, I’ve got the hang of this college thing and I love it. My schedule works around my children’s time in class and I still keep my weekly volunteer time at their school. I’m taking classes that apply to my advocacy love and dream job which feels really good.

*Our hard work has paid off. The house is stable enough where we can divert some of our resources towards yard work – which I love.

*Back to Creating
With all that work going on there was limited time for fun stuff. It felt like we were always coming home to another thing to fix. Now it looks like the road is becoming more even. I’m getting back into the swing of being creative again. I’ve begun to crochet a little, write more and hopefully paint something that isn’t an interior wall.

Part of that goodness is that I’m back to sharing with you, but in a more rounded, balanced way. Sometimes I feel like I don’t have a lot of new IBD related things to say. But being a Crohn’s Disease patient and Ostomate, my everyday life is very relevant. There are things I do now I never dreamed I would ever be able to do when I was sick. And while I am well now, I know Crohn’s Disease could come back tomorrow and do its best to take all this goodness away. I am very aware of that.
And so to fit that intent I have a new page look which will continue to evolve. If you like it, thank my husband. He really listened to what I wanted and is making that happen in real life. He really is a sweetheart.

Thank you for reading and catching up on my 2015 recap. It’s amazing to look back on a year of change and learn from those experiences. I am eager to see what 2016 has in store.

Laughter After Surgery

On this Monday I am taking it pretty easy. Resting and recovery are the only items on my schedule.

With that in mind I wanted to talk about laughter after surgery. Laughter on its own is fantastic. Laughing lifts the spirits and sparks that joyful part in us all.

But then again, not so great when laughing pulls at stitches. Last night my husband and I were watching a funny show and nearly got through without a hitch. That is until the very last scene where one of the main characters did something so funny that my Dearest and I were rolling with laughter.

He was euphoric with comedy humor and I was gripping my side in a combo of laughing at the hilarity and body protesting the pain. I was laughing at him, then next at myself as we erupted even more so together. The humor continued to unfold on screen feeding the howling frenzy of two people unable to look away from all that perfect acting. I tried not to laugh, which made the whole situation that much worse. Tears streaming down my face, I tried calm breathing which proved ineffective when in the grips of a full belly whopper. Think about lamaze, lamaze isn’t funny. Think about real estate, that’s not funny either. And then it built up again, chuckling at my other half as he was watching me in my blended state of hilarity and distress. The look on his face with those wide eyes and open mouth guffaw was priceless. We couldn’t help ourselves, we were hilarious. The mix of cramping, pulling, roiling abdominal muscle against stitches, torment and the play of emotions, both in the show and in ourselves, was its own twisted comedy.

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Oh heavens, I really do love us.

And so today it’s no surprise I feel like I got sucker punched right in the belly. Blarg! Throughout the night I was diligent about pain meds and used a heat blanket which was heaven. Even still, today I am stiffer and slower than I’d like to be. Laughter ambushed my recovery and likely put me back a day or two in my road to wellness.

 

Boo!

Even still, I keep thinking I really need to watch that episode over again when I’m fully recovered. And no more funny business until then.

I wonder if my Hubby is up for a good drama?

A Boy, A Bikini, and an Ostomy

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For once, I’m not writing a blog on an airplane to kill some time. Christy mentioned an issue that I feel needs to be addressed immediately.

In light of all the bikini shots that have been going around, and the recent media attention surrounding them, a few very good questions have rolled her way. One of them caught my eye as it pertained directly to my past behavior. But first, a bit of context for those who like context….

On a long flight to Philadelphia, roughly two years ago, I wrote a blog for Crohniebolognaibd.com that got split into two parts. They reflected the events and my feelings that were involved in my wife’s permanent ostomy. There is some heavy stuff in there, and I still get a bit emotional thinking about it. Several times in the course of our marriage Christy has nearly died due to Crohn’s, and I believe the events that occurred during her recovery from her permanent ostomy was the closest she came to leaving me a widower. That is in Part 1. The information under the ‘Ballroom’ portion of Part 2 contains some of the context pertaining to the question I need to address and answer.

Surfing a few of the posts from various Crohn’s and Ostomy websites, there has been a recurring concern since the whole ‘Ostomate Wearing a Bikini’ media storm in early July. And that concern, and the reason why I’m writing this brief post, is “I am a woman with an ostomy, and my husband/fiancé/boyfriend does not want me to wear a bikini in public.” So, let’s dive into this and I’ll give you my perspective as a non-ostomate in a committed relationship with an ostomate.

Every man is different, and every man will react in a different way to various situations. That said, I think I can weigh in on this one with some level of accuracy. There are three likely POSITIVE causes for his reluctance for you to wear a bikini in public. I say ‘positive’ because if you are in a bad relationship, then all of my advice and insights are not going to be helpful. Those three things are: Overprotectiveness, Anxiety, and Fear. Not great words to associate with ostomate boy-toy’s eh? Doesn’t make it untrue as I went through each and every one of these emotional states.

I was Overprotective of my wife. I did not want people to judge her for her ostomy. They didn’t know her; didn’t know what she went through. And it was not fair for them to make assumptions based upon the gear hanging off of her abdomen. But…they WOULD make assumptions, and they would say something to ruin her day. Or….at least that is what my overprotective emotions were relaying to me. I must do all I can to help her hide her gear so she doesn’t have some asshole make a stupid remark!

I had anxiety because I didn’t want to deal with the fallout from those stupid remarks. People MUST NOT FIND OUT that she has an ostomy! If they do, they’ll give her shit, and I’ll have to deal with the emotional fallout! I’ll have to spend days or weeks helping her feel better and find ways to make life not suck! I want our lives to be happy, not ruled by the sadness that is going to come from some random jerk or judgey people.

And I felt Fear. It isn’t normal to have ostomy gear on display to the public. Women should look like they do on TV, in department store ads, and in the general public eye! A woman should be without flaw….and if a flaw is detected, physical or behavioral, then she will be ostracized as badly as Hester Prynne.   That scarlet letter on her abdomen will be a mark upon our relationship that will destroy any chance we have at a normal life!

Some or all of those are problems your man battles with in that grey-matter between his ears. Contrary to sitcoms and general stereotypes, men are VERY emotional, we just like to think we can hide our emotions. The overprotective, anxious fear he feels could be a direct result of his love for you and his need for the relationship to not fall into turmoil or a quagmire of depression and sadness. Is the possibility of your relationship being defined and dominated by your ostomy? No. Not a snowball’s chance in hell. Is the possibility that he has trouble dealing with the public perception of an ostomy and for this reason he has a fixation on 1-piece swimming suits? Almost definitely.

With that said, here’s how you deal with this problem of public perception.

Be yourself!

The ostomy doesn’t define you. It doesn’t change how you act and react to the roses and poo thrown at you in the course of your life. If you want to wear a bikini, wear one. He’ll get used to it or he’ll leave you . If he leaves you, it’ll hurt, but ultimately he likely would not have passed critical line: “for better or for worse, in sickness and in health”. Christy kept her outgoing nature and I was able to eventually get over my anxiety and overprotectiveness.

Mental Tricks!

Make him aware of a philosophy I picked up a while ago. I’m not sure how or where I ran across it, but the philosophy goes something like this: You care about yourself more than other people care about you. This philosophy works in two ways. An example of how it applied to ‘me’….I have some anxiety when making public speeches, and it took many years for me to figure out that this little item was causing me more anxiety than was reasonable. I was too worried about what people thought about me, and it was causing me to focus too damn much on the fear and anxiety of how they would react to what I was saying.

Turn the sentence/philosophy around and look at the other side. They are too preoccupied with their own life to care about my speech. Odds are, they will forget 75% of what I said, and the 25% that remains will only be a vague memory of the content of the speech, not what I was wearing, or my hair cut, or whether I stuttered mid-speech.

Once he understands thatNobody Cares

1.) We aren’t in High-School anymore, and

2.) Joe Blow on the beach cares more about what he is doing than judging your life, he will get beyond any applicable public fear.

A person is able to be himself, and let their significant other be herself. And hell…. I guarantee he’ll be a happier person!

 

Dismiss the Jerks!

Some people are jerks. They insult for the fun of insulting. Most of them are young, inexperienced people who, according to any game of Call of Duty I’ve ever played, had intercourse with my mother on several occasions. Eventually they may graduate high school and experience the real world. Then they will not have time to devote to attempting to boost their self-worth by reducing other people’s self-worth. Dismiss these cretins. Tell him that these idiots don’t matter one whit to your life or relationship. ….. maybe word that into a more flowery, tactful way….. In general, not letting some stupid jerk mess with your head, regardless of whether you are an ostomate, boyfriend of an ostomate, have red hair, have big hips, are too fat or too thin, are straight or gay, have freckles, dimples, or are wearing your ‘weekend cleaning clothes’, or are generally living life, then you will find yourself dwelling more on the good things life has to offer, than what some stranger said in an attempt to look cool or feel superior.

However, if they go too far, don’t be surprised if your boyfriend/husband punches them in their stupid face. There are limits to the types of verbal abuse we will allow someone to say at/to our significant others or close friends.

Baby Steps!

Buy your bikini, but buy a few sarongs to go with it. The first time you wear the bikini around him, wear the sarong 90% of the time. Then next time you are with him, 80% and 70%, and so on. Not only do sarongs look hella sexy on women, but it’ll give him a bit of that middle-ground between a bikini and a 1-piece. As time goes on, wearing a sarong won’t even matter anymore because he’ll have acclimated to the bikini AND he’ll have realized that the majority of people just don’t care that you are an ostomate wearing a bikini on the beach.

see nobody cares-bikini

 

Here’s an excerpt from Part 2 that I feel is still relevant and highly applicable to this post:

“Perhaps if your guy-dude-person-spouse is being overprotective, or he is pushing for longer shirts, one-piece swimsuits, or whatever, don’t assume he is ashamed to be around you, or with you, or of you.  He may just be worried about stupid people saying shit to you that will hurt your feelings for no good reason.  It only takes one snarkey emotionally shallow teenager to ruin your day.  I don’t want to see any day’s ruined.  That is no excuse for me to hold my wife back from her outgoing, expressive self.  And as long as I can recognize WHY I feel the way I feel, I can check myself when I need checking.  But it did take me some time to get to the point where I could realize these emotions.  So, if your spouse is doing stuff that seems to be overprotective, this may be why.”

 Every relationship has its semi-unique issues. The older I get, the more I understand that all relationships have some crazy and wild stuff happening. A kid with hemophilia, a crazy family member, cancer, depression, infidelities, poverty, severe disabilities, Alzheimers. The list is expansive and emotional. The thing is, if everyone is going through this stuff, then those complete strangers are too preoccupied with their own issues to devote more than a brief portion of their life to your problems. The things that trouble you matter only to your significant other, to your close friends, and to your own self-worth. Realizing this, you and your significant other will find you have the emotional freedom to enjoy you walking around, sunbathing, and swimming in that bikini.

Be well my friends.

Ostomies and Emotions A Family Members Reaction ~ Part 2

Here is the second part of A Family Members Reaction.  I must say I learned a lot about my husband and his experience through this article.  I love that after almost 16 years of marriage I am still learning something about him every day.  Even when he is away in Philadelphia.  My dearest went through changes that challenged him, made him stronger and more open to what must have felt impossible at the time.  He came through with flying colors and a year and a half after permanent Ostomy surgery we are stronger than ever.
Please enjoy the second part of my husbands post.

 

 

I don’t think I’ll mention any of the medically relevant stuff regarding the recovery period.  That is somewhat separate from the emotions one feels during the shock and awe phase of the surgery.  Anyways, I can write up that kind of article some other day.  In this second half, I’m going to focus on some of the nitty-gritty emotions a male-partner may feel; what I felt, after this change.

It is somewhat tuff on guys, being wired the way we are.  Or should I say, wired the way I am.  Certain things I just have no feeling about when my wife obviously expects me to ‘feel’ something?  So-and-so just got totally whatevered on facebooks?  Meh?  Some actor is doing something to someone?  Double-Meh?  So when it comes to day-to-day stuff regarding an ostomy, emotionally it is no different than how I felt about her before the ostomy.  There are three places where this changes: The Bathroom, the Ballroom, and The Bedroom.

Your bathroom will become stuffed with all sorts of gear-changing implements.  And an odd odor will begin to make itself known from time to time.  This wasn’t hard on me; although I personally do not do well with bathroom smells.  Emotionally, I felt something akin to resignation.  This is how things are going to be.  If it is not something I can control, why change yourself emotionally?  Like an average, emotionally despondent dude, I ignored what I couldn’t change and began fixing what I could.  I set up shelves and reorganized the master bathroom to increase storage space.  I installed an overhead heater to blow warm air on the toilet area where Christy sat to change her gear.  (We lived in Oregon and that master bathroom got SUPER-COLD during the winter months)  And I tried to do other little things to the bathroom to make it a more comfortable place to be.  I fixed things.  Guys, at least guys in my family, are fixers.  Give us an emotional problem, and we’ll try to do something to fix it.  So if your ‘man’ goes all ‘Home Improvement’ on you after you get home from surgery, he is probably accepting what he cannot change by changing what he can change to make life easier or more comfortable for you.  That’s what I wanted to do; what I attempted to do.

The ballroom is a bit of an extension to my thought on this emotion.  Not only does the ‘Ballroom’ represent a handy word I can use to have three consistent ‘b’-words in a row. (I know you all want to read about the bedroom, so I had to fit SOMETHING in to keep your attention between Utah and The Rockies)  The Ballroom represents public perception.  And, to a lesser extent, private attention.  It is the little-kid-with-thick-glasses syndrome.  That kid that has something different that distinguishes him from the normal crowd.  That kid has two options, to express and embrace those glasses, or to cover them up by using contact lenses.  Ostomy gear is much the same.  It was hard to see my wife’s, formally smooth belly replaced with a tan-colored ostomy bag.  Change, even change you cannot change, can be difficult to accept.  All I can say ladies, is that you need to provide some time to your significant other so he may accept and embrace that change at his own pace.  That is what helped me.  I had to have a month or two to ‘get used to it’.  An ostomy is nothing to be ashamed of, however, the initial exposure to something like this was, well…different.

I guess it is hard to explain; suffice to say, I was uncomfortable and afraid.  This was not my first experience with an ostomy; Christy had a temporary one earlier in our marriage.  So I will have to express a bit of what I was feeling back then, mixed into what I felt after the permanent ostomy.  I felt afraid.  Afraid I had somehow broken her.  Afraid of touching anything abdominal.  Afraid of causing her embarrassment or reducing her self-worth.  I was afraid I wasn’t loving enough, or too loving.  So I subconsciously feared that silly little bag hanging off of her abdomen.  And I needed some time to get used to that fear….and a doctor to tell me that sex wouldn’t cause her any harm.  I have a whole story about THAT from a half-dozen years ago that I’ll regale you with should you ask….

What was that other thing?  Oh…being uncomfortable.  Yes.  It is quite a change to have to ‘work around’ that little accessory.  And to get used to it.  I guess I was uncomfortable with how it felt, how it looked, and how my emotions were reacting to it’s presence.  I am somewhat bashful regarding the things that happen in the “potty”.  Anyone who has watched the American sitcom ‘Scrubs’ could identify how I am around “bathroom topics” by comparing me to Dr. Reid (played by Sarah Chalke…I believe).  The things people do in there should just not be discussed!  And if it is, you must use silly words!  And NEVER talk to people through the door in the bathroom!

And hey..if you are in there doing some ‘business’…turn the fan on to drown out the unmentionable ‘noise’!

Now these noises appeared in the living room at times.  Or at the dinner table.  Or I could see an ever-changing shape in the front of the clothing area.  Initially, it made me uncomfortable.  Why?  Because it was new, different, and outside my ‘usual’ comfort zones.  I’m sure Christy picked up on this.  To you “virtual passengers” accompanying me on my plane ride I will say this; in no way did this discomfort reduce my love, caring, or understanding for my wife.  I simply needed some time to get used to the change.  If I were to give any advice to you regarding this change, I would recommend wading in as opposed to jumping in; referring to the old swimming pool analogy.  Hell, you probably know your significant other way better than I do, so it is your call.  For me, wading in with sexy blouses, flowing dresses, and long t-shirts for the first two months was helpful.  It didn’t make me forget the ostomy was there, but it allowed me to process the change better; over a longer period of time.

 

That is the ‘private’ component to the ballroom.  Sexy outfits, similar to Awestomy’s Booty Shorts.  (I know you’ve seen the pic.  Yeah!  I’m married to that! Muhahaha!) But the ‘public’ component is a bit harder on a guy.  As you may know, Christy is very outgoing.  More so than me.  I’m more of a conformist in many ways; I don’t do things that are significantly beyond the social norm.  I run through my mind the things peoAwestomy_Review_Booty_Shorts_by_Christyple will say, or think, or JUDGE if they see my wife’s gear.  Emotionally, I experience two main things.  The first is the anger and pity I feel for our society.  In the United States we come out of a public school system that seems to encourage children to be horrible to that which is different.  Or apathetic parents who gossip in front of their children.  Or news stories talking about how horrible someone is for having that extra soda, smoking cigarettes, eating bacon, standing crooked, having big boobs, having small boobs, Kardashian’s ass, or crazy face tattoo guy.  Stories about a woman overcoming adversity, and living life to the fullest are rare on the headlines.  Oh..they are there, but they don’t ‘bleed’ enough to ‘lead”.  So we have a society that will judge my wife for having gear.  And I feel anger and pity for those participating in this non-empathetic mindset.  Don’t get me wrong…there are tons of bad people out there.  And my ‘understanding’ of people in these stories only go so far.  I guess I attempt to measure these things with the experiences I have, and always try to give people the initial benefit of the doubt.

But I digress.  Anger and Pity.  These initial emotions are what I feel towards those that will inevitably look down on my wife for the gear that she has.  The second component is fear; or perhaps an odd form of overprotectiveness.  I have a fear that someone will say something horrible to her on the beach, at the pool, or in a restaurant.  That fear drives me to hold her back at times.  I recognize that compulsion and do my best to avoid my unfounded overprotection.  Perhaps if your guy-dude-person-spouse is being overprotective, or he is pushing for longer shirts, one-piece swimsuits, or whatever, don’t assume he is ashamed to be around you, or with you, or of you.  He may just be worried about stupid people saying shit to you that will hurt your feelings for no good reason.  It only takes one snarkey emotionally shallow teenager to ruin your day.  I don’t want to see any day’s ruined.  That is no excuse for me to hold my wife back from her outgoing, expressive self.  And as long as I can recognize WHY I feel the way I feel, I can check myself when I need checking.  But it did take me some time to get to the point where I could realize these emotions.  So, if your spouse is doing stuff that seems to be overprotective, this may be why.

Now! On to the Bedroom!  A fitting time, as we have just hit a large patch of ‘turbulence’ and my laptop is bouncing dramatically up and down on my fold-out tray.  How Exciting!

I love sex.  I really, really like having sex with my wife.  And I feel no shame with the sex that we have; with or without the ostomy.  Sure, certain things had to change in our relations.  Some spontaneity was lost as she likes to excuse herself to switch out to a swim bag.  And as I mentioned earlier, it took me a few months to get used to the gear.  But within, say four months, we were back to our regular rambunctious selves.  Well…as rambunctious as two adults with little spare time and two very energetic children can get in this day and age.

At first, we had no sex.  She had to wait for six weeks or so to get cleared by the doctor.  So you have a good six weeks right there to get used to the gear.  After that, we waded into things using camisoles and night gowns and other mild…and not so mild lingerie.  Then the mild coverings were slowly removed from our routine and we simply started having our normal whimsical, as-you-are happy time.  It may be my nature to “wade into things” as opposed to “dive into things” that drove this process.  And the situation may be different from your significant other, but there it is.

Emotionally?  Well, as I said earlier, my emotions in bed were tempered with fear of causing more damage.  A lot of stuff happens down there; a lot of impacts, and jostling.  To disrupt that area with some over-vigorous force would naturally cause problems…right?  Well, I was wrong about that.  And it took a doctor asking me how things were in bed to attain this realization.  The realization that when Christy had her first temporary ostomy, my lack of marital participation was completely stupid.  After that, I don’t know what to say.  As long as you are there emotionally, and participating eagerly, it doesn’t really matter much to us guys.  Dress up in something skimpy now and again.  Be creative.  And for the good lords sake…if you like something we do with you in bed TELL US!  We men are notoriously bad mind-readers; and as a loving spouse/husband/partner we simply want to give you the most pleasure we can, in the way you like it best.

But, that really has nothing at all to do with ostomies.  It is just normal pillow-stuff.  And that’s what sex will be once we get used to the gear.  Normal.  Sensual.  Real.  If you had good sex before the ostomy, in a very short time, once you and your partner are comfortable with yourselves again, you will have good sex again.  It may take a week, it may take a couple months, it may only take a little glint in your eye.  But sex is actually one of the simpler problems to solve.  One last thing before my laptop battery dies.  We men may not be good mind-readers, (we really suck at it actually) but, we can read emotions fairly well during sex.  If you are not into it, it’ll make things uncomfortable or distracting.  I am sure the opposite is true, should the guy not be emotionally invested.  If you feel that emotional separation during sex, either of you, don’t give up on the moment.  Have more sex.  Have conversations about what you like to do during sex.  And HAVE MORE SEX.  Remember, nerve endings have changed down there.  Something you liked before the surgery may not be as mind-blowingly wonderful as it once was.  You’ll need to work together to find those new, great things that will work as good, or better than the old things.

So have more sex!  It is easy to get out of the habit due to stress, or work, or life IN GENERAL.  A life change of an ostomy can create an emotional wall if you build it brick-by-brick.  So, knock down that wall with frequency and passion.  If you don’t have the passion, have more frequency.  The passion will return.

Well.  That’s all I got for this flight.  I think we are descending into Philly.  I really appreciate you taking the time to read my ramblings.  And for giving me someone to talk to on this long-arse flight.  I hope what I have written can be of some help for those going through some emotional issues, either ostomate or boy-toy of ostomate.  If you want to hear more from me, or if you want me to expand on anything I have said.  Just let Christy know.  And don’t forget to like her on her facebook page!  She lets out a happy cheer gets a big ol’ grin whenever someone does that.

My final message to you as I rapidly descend in this turbulent ‘flying’ aluminum tube of death; please remember to keep a positive outlook on life,  find enjoyment in the little things, and to be strong.

Reuben
aka Husband to Christy at http://www.crohniebolognaibd.com/

 

Let’s Talk About Sex

*Disclaimer!  I am writing this article with a specific audience in mind.  If you are healthy enough for sex then I am talking to you.  If you have just been cleared by your surgeon and you are a brand new Ostomate wondering how to jump back in then I am talking to you. If you are the partner of an Ostomate, this may be helpful for you.  If you had a longer than expected hiatus from sex and are wondering how someone else made it through something somewhat similar to you then this is for you.  If you are looking at Ostomy surgery in your future and were wondering how the transition back to sex might work after then this is for you. For that matter if you are an adult in general interested in sex I am talking to you.
Who I am NOT speaking to:  Minors.  Yep, that’s pretty much it.  This article is NOT for kids.*  
There is a myth out there that Ostomates are not sexy.  There are misconceptions about whether Ostomates even have sex.  Surely it can’t be any good, what with ‘that bag’ in the way?
In truth couples are proving this myth wrong every day.  We have energetic, passionate, rowdy, tender, flirtatious, spontaneous, tangled up, sweaty, naked, and amazing, keep the lights on and give him a good show married people fun. 
I have been married for nearly fifteen years to my dearest husband Ben.  He is funny, charming, smart, and my friend.  We have been through a lot together and make a great team.  Because of all his nifty traits, (and his lovely melty brown eyes), I trust him and don’t have to hide anything from him.  This makes for wicked awesome sex!  That’s right folks, I am his Goddess.  Bearing in mind that I have not been keeping tabs on other peoples love lives; I would consider us normal.

After surgery to become a permanent Ostomate there was a transition period.  I was learning to meld with my gear, reacclimate to being pain free, and figuring out my new activity level.  By the time I got the ‘all clear’ from my surgeon, I was ready to regain my goddess status.  But we had a few obstacles to overcome before things could get back to normal. 

The most important was body image and self confidence.  I feel sexy so I AM sexy.  Just one of those life facts that I figured out early on, and still stand by today.  I am sure if I went into hiding and pouted about my Ostomy or Crohn’s Disease I wouldn’t be cute at all.  Not even to myself—so I didn’t.  But that does not mean there wasn’t a journey.  I needed to be proactive and find a way to make this new thing work.

Because my husband is my friend I felt natural being naked with him.  But starting out I did not see my Ostomy as part of me; I was still transitioning (melding) with my Ostomy.  It was awkward to go from flat tummy to what I felt was a bulky bag.  This stoma/bag combo was a rude interloper messing up my hard work.  I was grateful for it, after all it saved my life, but did not think it was sexy.  At the time I was using the clear full length bag where you can see all your output.  Useful for a new Ostomate in regards to learning about stoma size change and output patterns, but it’s not going to have your husband panting after you by any means. 
I was concerned with being able to rock the Ostomy and be as sexy as I felt inside.  I was worried that my poo-phobic husband would not find me amazing anymore.  I was afraid that instead of passion I would get pity, disgust, or even worse- rejection.  I discovered with only small changes to my lingerie I could hide the clear bag and have fun.  But that wasn’t enough.   I hated the sense that I was hiding any part of myself and it made me cringe to think that this was the trend I was setting so early into my new Ostomy life. 
I discovered opaque bags.  And even better, I discovered the drainable small opaque bags.  Now I am hooked.  They are skin colored, tiny and perfect for my needs.  Now I could feel totally naked with my husband and not worry about Ostomy gear getting snagged in and amongst all the sexy high jinks.  It has been the perfect fit ever since.
My sweet husband had an Ostomy journey of his own to traverse.  He was stressed out in his own way and recovering from the surgery like I was.  On one hand he was grateful to have me healthy, happy and pain free. But on the other there was a real sense of loss. 
For him the Ostomy was like his wife had lost a body part.  He saw me as permanently handicapped.  No more washboard stomach and flat ‘safe area’ for him to run his hands freely over.  Instead it was replaced by a new, mysterious, and dangerous area that may cause harm if touched wrong.  He was afraid to touch my bag for fear of injuring my stoma, irritating my skin and making a wound or pulling it off during the fun.
In the first two months there was cautious reluctance on his part when it came to any physical contact beyond a gentle hug.  I could feel his efforts to be extra gentle.  I watched the expressions run across his face as his hands lightly surveyed my body.  Ben was afraid to ‘break me’.  He had been witness to what Crohn’s Disease could do and had seen me at my worst.  That was stressful on him and made a lasting impact.  So, of course he could not feel comfortable having sex with me until he was sure that I would be okay.  I was eager to get back to our active sex life but did not push him; knowing he was still working things out.  At first he was very aware of my every reaction and took special care to go slowly.  I went out of my way to show with my actions that I was more than healthy and enthusiastic.  Once he realized I was just fine, he became more comfortable.  
It was an adjustment and a definite change.  Ben welcomed my new lingerie with eager acceptance and warmed slowly to the small opaque bags.  He is still very careful about my stomach and sweetly accepts my wish to dash into the bathroom to ‘freshen up’ aka. empty my bag and sometimes switch to a small swim size bag as an addition to foreplay.  This does take some of the spontaneity out of our sex life but it is easily compensated for with a little preparation.  I often return moments later to lit candles and fluffed pillows, so I count the ‘distraction’ as a positive one.  It is not that there is no spontaneity, it has just changed.  Ben now notices when I’ve just left the bathroom and makes out with me in the hallway in effect skipping that whole ‘freshening up’ phase and getting straight to lighting each other up. 
At this point Ben has come to terms with my surgery.  It doesn’t matter if I am in a small or regular size bag, lingerie or in the buff.  Whatever I feel most sexy in is how he loves me.     
Sex is more than the in and out grinding off of one another.  It is the confirmation of our covenant expressed physically.  When a couple has sex they are feeding their relationship, nurturing each other and connecting in a spiritual way that infuses their souls.  I comfort, console, empower, and confirm him as my one and only.  Why wouldn’t I want to do that every chance I got?  The act of sex is quite claiming.  I belong to him and he belongs to me.  This fact goes beyond the presence of an Ostomy. 
For this past Lent we celebrated by putting our marriage first.  We chose to have sex every day as a gift to ourselves.  It was about giving up all those things that make you too tired, too busy, and too irritated.  Our lives are busy, so we had to carve out time and prioritize each other.  We were sweeter, made out more, and reveled in our happiness.  It was about strengthening our marriage.  Personally, I was celebrating my life and my health and the ability to participate fully in it.  It was the most glorious forty days ever!  I would highly suggest sex as a perfect way to celebrate any season of the year.
Some tips that might help
*Switch to small opaque bags for sexy times.
*If you feel timid or have a partner who is, wade in with lingerie then lean towards going without once you or your partner gets more comfortable.

*Don’t hide in the dark.  You are alive, lovely and healthy enough to have sex.  Be proud of your good stuff and celebrate that with your partner.

*Be patient with yourself and your partner.  Cut, altered, sensitive, and mute nerve endings in the perineal area –especially if you have had a proctolectomy- change sensations.
 

*Be willing to try different positions.
  Work together to learn what feels best for you.  Try things like being on top so you have better control, plenty of water based lubrication and creativity.  If something doesn’t work, don’t give up.  Just try something else.  You are only limited by your imagination and flexibility.
 
*Don’t be afraid to talk with your partner and nicely guide him to what works best.  Trust me- he wants to rock your world.  He can’t do that if you don’t help him out. 

*Practice makes perfect.   Keep trying until it is just right….then do it again!


 Happy love life everybody.