Thursday, October 25, 2012

How can this be?

Yesterday, my little brother was diagnosed with Crohn's disease.  Lately, he has been having all the symptoms, abdominal pain etc and the doctors wanted to do the tests because of my history with Crohn's.  I told my mom that it probably isn't, that he is in the wrong age range, it's probably something else.

Well, I was wrong.  He has Crohn's disease.  I'm ashamed to say that my first reaction was anger. How dare he?  I'm the sick one of the family.  It's MY role not his.  I can't even wrap my head around this. My whole life, 30 years now, I have been the sick one and now he's got it too.  I know I'm supposed to feel bad for him and I do but right now, I'm having a hard time of it.  I feel like the worst selfish person in the world.  Am I wrong to feel this way?

It's making me remember how I felt when I first got diagnosed-I thought they had made it all up.  I remember the pain and the diarrhea and all that.  I'm thinking my brother is hoping that he doesn't have it nearly as bad as I do. I hope he doesn't either.  I really do.  He's probably scared to death about all this.  I don't want him to suffer as I have all these years.

Logically, I know that most people don't have it nearly as bad as I do.  I'm thinking I may need to talk to a shrink to understand and get past why I'm so angry about this.  A friend of mine suggested maybe it's because subconsciously I feel I have suffered enough for our family, but I'm not sure that's it.

I hate that I feel this way.  Am I an awful person?

Just talked to another friend and she hit it right on the head.  Crohn's was something that was all mine, awful as it's been, it's all mine.  Now it isn't anymore. So what does that mean for me now?  What 's left of my  role now if I'm no longer the sick person in my family?

I feel like I'm losing my identity.  Crohn's is my identity, it's what sets me apart.

Now who am I?

Wednesday, September 26, 2012

Dating with Crohn's

I know it's been forever since I've written on here.  I had big plans for this blog and life just keeps me from doing all that I want to do.

My latest foray is to try online dating.  I have been alone for three years now and felt it was time to try and get back out into life again.  I was so broken hearted from my last relationship, that I just went inside myself and was safer just to be a hermit. Lately, I have realized that that is no way to live.

So the online dating thing-

It's a mad world out there, full of crazy people just looking for sex with no strings attached.  That is certainly not why I went online.  It's also a cruel world. I've told you about having an ileostomy and an IV in my chest.  When do you tell prospective dates about your illness?  Do you tell them right up front or do you wait til there is something there worth exploring. I have tried both. I can say that men in their forties are not as shallow as men in their twenties.  I have had my ileostomy for a long time now and it still hurts when someone seems to like you and then they find out about your illness and you never hear from them again.  Like this is how I want my life to be, like I chose to be sick and have these false body parts.  It hurts now just as bad as it hurt then.  I can say as before that men on their forties seem to not care about my illness.  I guess as men get older they grow up and realize that I can't help that this is how my body is.

Having this IV cramps the dating scene as well.  I hook up routinely at 5pm-and that's prime date time. So I have to ask if we can do a daytime date the first time.  Sometimes I have explained that I don't want the first impression to be with my backpack and IV, sometimes I have just said I'd rather do a daytime date first to see how things go.

I can only say that for this moment in time, I have only had one date, although I have 'talked' to several guys on this site.  I've been alone a long time and I'm not going to settle just to have someone in my life. It has to be someone I really think could be important in my life.  The one date I did have, I was led to believe that a relationship was forth coming. One thing led to another and the next day, I was told that that shouldn't have happened that fast and that he just wants to be friends.  Really?  I can't help but think that maybe once he really saw my ostomy and IV that it was just too much and he really didn't want to deal with my illness.  But of course hindsight is 20/20 right?

I realized that he never even asked me how I was feeling when I told him I'd been sick.  He never asked anything about me.  It was like he really didn't want to know me.  Why couldn't I see that before that fateful date?  Am I that lonely that I can't see what's really in front of me?  Has my illness become this all encompassing thing?

My biggest fear is what will happen to me when my parents are no longer around and my illness finally gets so bad that I can't even support myself any longer.  Am I desperately trying to find someone to take care of me?  Or am I in this for the right reasons? I don't know but it's certainly something to think about.  I want a man who wants to know me-the good the bad and the ugly.  Believe me there is a lot of ugly.

So what do you do?  Do you tell right up front about your illness or do you hold back until further into the relationship?

Tuesday, March 27, 2012

My special dream

After you read what I'm about to tell you, you're probably going to think I'm nuts. I assure you, I am only slightly nuts!

I told you that I have 2 liters of TPN running over 12 hours while I sleep.  Well that creates a lot of urine and I have to get up every couple of hours or so.  It's just how it is.  I have been doing this for 6 years now. Most of the time, I wake up on my own but my mind has figured out a way to get through to me if I don't.

My mind creates a scenario in whatever I am dreaming about at that moment and inserts a scene where I am peeing.  I am so not kidding.  Last night, I must have been sleeping hard and didn't wake up on my own.  I remember in my dream that I had climbed up on this thing and it had a bucket like object there filled with ice water.  (hey I don't claim to know what the hell all the details mean!) I remember emptying some of the water and sitting on the bucket and peeing.  I also remember that after I was done, it had spilled over.  I took that to mean that if I didn't wake up quick, I was going to wet my bed.

I woke up.  It really doesn't matter to me if you think I am making this up.  I know the truth and I have no idea how my mind came up with this way to get through to me while I am sleeping.  But I have to admit, the body and mind are freaky things.  I am grateful that my mind does this for me.  I certainly don't want to wake up in a wet bed!

I thank you, my special dreams.......

Monday, March 26, 2012

3 years

So it's been 3 years since my last surgery.  I have not been hospitalized in the past 3 years either.  I think this is a new world record for me.  Do not be under the delusion that that means I've been healthy because that just isn't true.  The longer I go without surgery, the more sick days I get until the day I just know it's time.  I've told my MD that I will call him the day I need to be admitted.  I can't explain it-I just know when it's time. He keeps trying to give me medicine but nothing works for scar tissue!  I have had to increase my pain medicine.  I have been on the same dose for almost 4 years now and it just isn't working for me anymore.  So I guess that's a good thing right?

I think the only reason I have made it this far is because I am all alone.  I am 9 hours away from my family and I have 2 cats and no one here to take care of them should I be admitted.  I think sheer will power is the only thing working for me right now.  But I am not an optimist.  People say you shouldn't think like that.  But since 1989, I have had surgery every 3 years-that's 9 surgeries!  So it's just how it is.  That has nothing to do with optimism or pessimism.  It's just reality.  MY reality.

What happens for me, is that I eat less and less because I'm just not hungry.  I have already lost 2 lbs over the past 6 months and I'm on daily TPN to keep my weight up.  So that tells you something about my intake.  Then my intestines slow down a lot.  To be brutally honest-what comes out of my ileostomy when everything is working is water. When I'm getting close to surgery time, the consistency becomes like thick oatmeal and stuff I eat doesn't come out until the next day.

If I do an upper GI when I'm healthy, it takes 15 minutes from drinking the barium to it coming out into my ostomy.  When I am close to needing surgery, it takes upwards of 2-3 hours.  For me, I get scar tissue and adhesions that wrap around my intestine.  They go in, take all the crap out and I'm good to go for another 3 years or so.  My last surgery March 2009 took all of 45 minutes from start to finish.  Yeah it's that fast-but I still have to have staples and a month's recovery.  I don't have any paid time off so that's a month of no pay. I can't afford that.

This is my reality and it scares me that my 10th surgery is coming-I never thought when I was diagnosed in 1986 that I would be reaching double digits....

Tuesday, January 24, 2012

The topic no one ever talks about

I'm talking about sex.  Sex with an ostomy.  Sex with a permanent Hickmann catheter.  Why does this topic make people uncomfortable?  It's a basic human need, yet does your MD bring it up with you? Mine doesn't.

I have had my ostomy now since 1995 and I'm not going to tell you my number (HAHA) but I will tell you about different reactions men have had when I tell them about my ostomy.  Being single and having a chronic disease, an ostomy and an IV? It's like having the plague back in the day or leprosy.

I have been on a date before where we had a great time, thought we liked each other.  At the end of the evening, I told him about my ostomy.  I refuse to waste my time with someone who can't handle it.  The look on his face I will never forget.  The look of disgust.  You have poop hanging from your abdomen?  Do I have to say that he never called me again?

Another guy I dated had a weird not quite love of it, but I guess to prove that it didn't bother him, he would kiss my pouch and tell me it didn't bother him. I thought it was sweet.

Another guy loved me for me and never saw my illness.  Sex with him was just incredible because of that one fact.

Now lets talk about sex.  Yes the naked sex.  I don't do any hiding, I used to think I would get a tube top and cover up my pouch with it.  I never got around to doing that.  I do make sure I empty it first, and not have sex after a huge meal-come on now, do you want to be interrupted? I also kind of fold mine up so it's not in the way, and most of the time, I prefer to be on top.  This seems safer to me that my pouch won't get smooshed by the guy being on top. But I sometimes am on the bottom, I just make sure he leaves a space.  My IV? I just wrap it behind the pillow or behind my head. That really doesn't get in the way. It only gets in the way if you left it.  The mind can do wonders if you let it.

I have never had an accident during sex.  By this I mean having my pouch leak or explode.  I was married with my pouch and it never was a problem.

What you really need to make sure is that you are comfortable with yourself and your body.  If you are not comfortable, you aren't going to make him comfortable.  If you get vibes that he isn't keen on your pouch, why go through with it anyway?  If the man loves you for you, he won't even let the pouch get in the way. He needs to have a sense of humor. The possibility always exists that your pouch will leak and make a mess during sex.  If he seems to be repulsed by that, why are you with him anyway?

I tell myself there is a man out there for me.  But I have to be honest here.  I am really lonely.  It's very hard to meet someone when you go to bed so early in the evening because you are hooked up to IVs and have multiple extra body parts. I still cling to the hope that there is someone out there for me.  I still refuse to waste my time on someone who can't handle my illness.  I met someone online, states away and it's nice to have someone to pass the time with. But reality is, he's there and I'm here.  I did tell him about  my illness and he didn't run away.

But when you are texting, is that really real?

Friday, January 20, 2012

The story I laugh at on the outside but kills me on the inside

I don't remember the year, I don't remember the place. What I do remember is I hadn't been diagnosed yet and I was having bad horrible bouts of uncontrollable diarrhea.

My family had gone on a trip.  One of the places we visited was a high rise building.  We went all the way up many floors on the elevator.  All the way up to the observation deck overlooking the city.  I remember that I had been holding my bowels in the best I could, trying not to ruin the family vacation. All of a sudden, I just couldn't hold it anymore.  The problem was there were no bathrooms on that floor. I had to get back on the elevator and go back down.

My family was upset that we had to leave so fast and in such a hurry.  I was in so much pain, trying to not have an accident. I finally made it to a floor that had a bathroom.  I ran and barely made it in time before I would have made a mess of myself.

Now we all know that sh*t stinks.  It's just how it is. But with Crohn's disease, it can be very foul smelling. Worse than normal.  Well this time it was so foul that the smell went all the way through the floor we were on.  My family started laughing at me for stinking up the place.  I laughed along with them.  At the time, it was a joke when we farted.  Was a game to our family.  So they didn't know that I was dying inside of embarrassment and humiliation.

Years later, my family would periodically tell that story of how I fouled up a whole floor of a building. I never say anything, I just laugh along.  But inside, it hurts and it hurts a lot.

It's been years since anyone has brought that up again.  So I really haven't thought about it lately.  I just wanted to share this with you, if you are reading that if this has happened to you, it's ok.  I think that if I ever hear that story again from my family, maybe I will have the courage to tell them that I have never thought it funny and that it truly hurts me when they laugh at my expense.

Please don't think I have a bad family.  I don't.  My family is awesome and has been there for me throughout my life.  They didn't know it hurt me, I never told them it did.  So I bear part of the blame for that.

This is just one of the many stories that have happened since I was diagnosed so many years ago....