Here’s the scoop. The last time I blogged I was getting ready to have the first leak fixed back in February. I went into surgery and my surgeon attempted to fix the leak. I came out and was told we needed to wait 3 months before I could try again.

So I went home and started the wait. Three months later I returned to Duke to have the o so wonderful pouch-o-gram done for the second time only to be told that there is still a leak.  On June 8 my surgeon and another surgeon from her team took another adventure into my butt. They stitched, double stitched, stitched again and then glued the dang thing. We were all hopeful that it would hold and let the leak heal.

Well as you can guess, again, it didn’t. On Friday the 27th I returned to Duke and had my favorite test done for the third time. At this point I could tell them how to run the test. You know it’s bad when these people that work at this huge hospital start knowing who you are. So, yes, the test concluded that the leak was still there and, oh you’ll never guess, unchanged.

I went to talk to my surgeon about what step we would be taking next. She told me that she has done everything she can do from going in through my bum. That shes not sure why its not healing and that there really aren’t to many options left. So the 2 options that I have are one put in a drain or wait.

Soooo where does that leave me…..sitting on the couch with a red plastic tube sticking out of my but…..OH WHAT A FUN FREAKING TIME! Oh no to mention still waiting, probably as long as another year, again a great time.  About every 4 weeks or so I’ll head back up to Duke to have the tube moved a bit as long as it doesn’t fall out first.  Or should I say until I can’t stand it and take it out. The thing is stitched to my skin and the tube is about a foot long. Yeah it pulls on the stitches, and I have to flush out the tube every day, it just keeps getting better and better.

I really feel like there just isn’t enough research being done to help people like us. There has got to be some better options for us. Yeah I know its not one of those serious illnesses you see on the news all the time but this is serious to us. I feel like we’re the little people in the medical world. Well we need attention to. We need help to. There needs to be more freaking help…..Where are you big wig medical people at?

As you can most likely tell I’m angry, frustrated and down right pissed off. I’m not giving up hope and I will continue to fight to get that part of my life back. And eventually the anger will subside and I’ll find a way to accept this situation and deal. Until then, I’m alright with being mad. I think that sometimes its good to be mad. We are all getting dealt “shitty” cards and none of us asked for any of this. I’m not signing any adoption paperwork and sooner or later I will kick him out on his poop bag ass!!!!

I am thankful for my boyfriend and my family, I really couldn’t get through this all without him or them! Mike is by far the best man in the whole world!!!!!

Stay strong and this too shall pass!!!

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For me it is offers 3 main things: 1) It eats up bad smell quickly and doesn’t just cover up the smell it removes the smell, 2) The scent of the spray goes away quickly in the air, 3) It is all natural, non-aerosol, animal testing free.

I highly recommend you try this product, you should be able to find it at your local drugstore.

These posts might also help out:

• February 11, 2011 -- Belladonna Wars? (7)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)
• September 16, 2009 -- Plaid Pantry Denies Bathroom to Crohn’s Customer (9)
• July 23, 2009 -- Happy Thoughts 101 (15)

These posts might also help out:

• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)
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• January 24, 2009 -- Devastating news…. (5)

A GORGEOUS young girl who currently has an ostomy, asked how to tell her new person. I said:

“I think you just have to take a leap of faith. Some people with surprise you with their reactions.
I don’t know that there’s any way to phrase it that will make it less awkward for you. You’ll probably have to explain a lot about the disease, surgery, etc. and that’s okay! You just have to know what a beautiful, wonderful, strong person you are, and that this doesn’t define you. The right person will realize that and be supportive.”

A few others responded, suggesting that she should wait, that telling them too soon might scare them off. Duly noted, but WOW I could not disagree more. I think these people need to raise their damn standards.  A la, my response to that:

“I know this is ‘heavy’ stuff and that some people have problems dealing with it, but do you really want to invest time in a relationship with someone who can’t deal with such a significant part of your life? I don’t…Just my two cents.”

Which brings me to the wonderful person in my life. My amazing, understanding fiance, Rob. The story I always tell people in these situations is about the time Rob asked me to tell him something about myself he didn’t know yet.  We might have been dating 3 weeks, but I doubt it. We were definitely falling for each other. So the first thing that popped into my head was, “Crohn’s. Ugh…Should I do this? What if it freaks him out? Or grosses him out?” Then… I took a leap of faith. I told him. He asked me questions and I answered. His response? “You are so brave.” I will never forget that as long as I live. I will always know what that meant to me, and it instantly showed me the kind of person I was falling in love with.

All I want for these fellow pouchers, IBD-sufferers, ostomates, is to have a happy, rewarding life, and someone wonderful to share it with. As much as we’ve been through, as strong as we most certainly are, we deserve a Rob in our life.

So THIS is what I told her:

“My fiance had dated a girl in High School whose little bro had Crohn’s, so he at least knew that it was a difficult disease and knew more maybe than the average person. So I didn’t have to explain too much in detail with him at first, but he asked me about the surgeries in detail, I told him, and now we have NO secrets. He knows everything. ie: That when I go to the bathroom to “get ready for bed” I’m washing my face, brushing my teeth, and putting in my nightly suppository, and he only cares that I am healthy AND he still thinks I’m the sexiest woman on the face of the earth. He has gotten in my hospital bed with me and read me Harry Potter and fed me chicken broth when I had to have emergency surgery. There was no pity in it either, just love, and THAT, my girl, is what you deserve.”

And all I can say to that is AMEN, Lizzy!

So cheers to all the wonderful people in my life: My ever-supportive and strong as a rock mother, my best friends, my sweet & loving aunts, my sweet little dog who is always there to comfort and worry about me, and my incredible man.  God has truly blessed me, and hope will bless all of you with the same type of love and support we all deserve.

These posts might also help out:

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Sex and Intimacy, Guide for Men and the people who love them Webcast

Oh, the tricky part of chronic disease. And the part we don’t nearly talk about enough, sex and intimacy.  I found the above webcast from male living with Crohn’s to be a honest, humorous discussion about his body image, disease, and his sex and intimacy challenges. Here, see this link to Mout Sinai about Sexuality: possible problems after surgery .  Although it is excellent information, it is “technical” where is the emotional stuff, where is the relationship aspect. Under the Emotional Issues section of the Mt. Sinai page they do state “Of course, other factors also contribute to how an individual perceives changes after surgery. People whose self-image is more reliant on physical appearance may be more prone to concern. Having or not having a committed partner has an important effect on coping. The amount of education available for surgery, which may allow for more realistic expectations, may also have an influence.”   Okay, so let’s talk about that, what do they mean?

I know that this was for years a real struggle for Mark and I to manage, especially when we were learning his disease, and he was losing his interest in anything physcial the more his health deteriorated.  But what we did form was a true relationship based on intimacy.  And it has been this intimacy that was one of the biggest gifts UC and surgery gave us.  We learned because we had to what gentleness and patience means, if we hadn’t I don’t think our relationship could have made it.  I find now that our intimacy is on a level unlike what I see in many couples (non-disease couples), and to be honest I wouldn’t trade it for anything.  We’ve been together 14 years, in our early 30s, and although many years of 20s were lost to UC – we are now back to healthy living which means more sex with now this added intimacy.   Good things can come from being sick I guess?!

I think that when we address disease or surgeries like Mark’s we talk about everything but the reality of body image, sex and intimacy. I wanted to share some of our experience because IT IS REAL, and all you reading this are probably in some stage of dealing with either sex or intimacy issues due to your stage of disease or surgery.   All I can say is talk about it, be honest and know it was one of our hardest issues over Mark’s illness.

Sex and living with an Ostomy: Everryone is different, so for some people being intimate with the stoma is probably a bigger than others (early on when the stoma is newish).  For us it wasn’t a big deal at all, and the reason it wasn’t a big deal is because Mark was HEALTHY finally. So for us the ostomy represented health.  I think the first time we were intimate after the stoma Mark wore the phoenix belt, then after that it wasn’t a big deal, he would just empty the bag and it would just there. I know some people tape up the bag, I know some people use attach smaller more temporary ostomy bags (which is clever). I’ve read of women wearing lingerie that strategically covers up the bag, etc…People make it work, and you’ll be suprised by how it is not really a big deal (as long as you make it a non-issue).

The Female Perspective: Females on Jpouch.org talking about Ostomy & Sex

The Male Perspective: Males on jpouch.org talking about sex and ostomy

Link to many many pages of topics relating to sex & jpouch/ostomy stuff:  Used the “Find” feature typed in “Sex” and there are 13+ Pages related to sex on the jpouch.org forum

These are only a few perspectives, but you can see that (1) people make the ostomy work and it isn’t an issue, and (2) there are places like www.jpouch.org where you can go and get the support you need on any related issues – you are not alone in this process.

Photo via: Dr.John2005

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