Wednesday, December 28, 2011

A pouch surprise-and not the good kind!

I went home for the holidays.  It's a nine hour drive.  I love driving but after about 8 hours, I'm tired and wanting out of the car.  I don't travel too often because of all the medical supplies I have to pack and the TPN in a cooler.  It's truly an ordeal.

I had changed my pouch the morning I left for my family's.  After eight hours in the car, I stopped for a potty break.  I went into the ladies room and realized that my brand new pouch had two pin holes in them. My pouch cover had poop spots on them.  I was alone, far from home, and stuck in a bathroom stall. I finished my business and walked really fast back to my car.  I sat in the front seat whipped my skirt down and put tape on the pinholes hoping it would help.  I had to be fast since I was basically naked in my car with people all around!  I only had paper tape and saw that it wasn't helping stop the leaks.

I ran through my options.  I could either drive the rest of the way and hope that I didn't make too big a mess of things, or I could go back into the bathroom and try to change my pouch.  I decided to go back into the bathroom and change my pouch.  I got undressed so if I pooped, I wouldn't get it on my clothes.  You see, I only have less than six feet of intestine left and it constantly goes except for first thing when I wake up in the morning.  So I was worried I'd have a mess on my hands.  I sat on the toilet, removed the leaky pouch and put the new one back on so fast that I was saved from disaster.

It has been years since I had a problem with a leaky pouch or an explosion under the wafer.  I still don't wear jeans to this day stemming from years ago when my jeans caused my pouch to leak.  I don't even own a pair of jeans.  I wear skirts only.  They are comfortable, look nice and don't squish my pouch.

I have had my pouch now since 1995.  For the most part, I don't mind having it.  It's something I accepted a long time ago.  But when this leak happened on my way home it really upset me.  Now I have that fear that it will happen again.  I make sure I have a spare change kit with me at all times. I hate living like that.

It will take a while to get over the fear again...

Sunday, December 18, 2011

My TPN surprise

I know I've told you before that I have been on TPN daily since June 2006.  Before I started on the daily ritual, I was hospitalized about every six months for a TPN weight gain boost.  I was found to have what's called Superior Mesenteric Artery Syndrome.  What this means is, I didn't have enough fat stores to keep the artery from compressing my intestine.  This anatomical phenomenon is located right below your left rib cage.  When my weight would drop just one pound, my artery would compress and I'd have a blockage requiring hospitalization.

Since this is a major artery, you cannot do surgery to correct this.  What they did do was make a different path in my intestines called a duodenojejunostomy.  This means they took the bottom of my intestine in the duodenum and attached it to the top part of my jejunum to make a bypass.  I wish I could draw you a picture.

Back then I weighed about 101lbs.  Now, after 6.5 years on TPN I weigh 118lbs.  It has kept me out of the hospital for the most part except for the 2 sepsis episodes.  I have not been admitted since March 2009.  That is one good thing about the TPN.

The other cool thing?? I grew boobs!! I was always the one with nothing there. My bra complaining it was leading an empty life.  I wore the one size fits all bra and was always a little sad that I had no boobs.  Then as I gained weight from the TPN, I noticed my boobs getting bigger and bigger.  All of a sudden after 37 years of nothing, I had 34C boobs!  Oh how I wish I had them growing up.  I might have been more popular.  Maybe I wouldn't have been made fun of like I was.  Maybe the boys would have noticed me.

When I really think about those days, I wore heavy sweaters, hiding myself inside.  I think if I had had boobs back then, I would have hid them too.  Now that I am 43, I have matured and am proud that I am still upright after all the damage done to my body.  I actually show the girls off in tight turtlenecks.

Even though sometimes I hate the TPN-hate having to be tethered to it, one thing I can honestly say now is:

I have a nice rack to show for it!  It is my silver lining in a vast array of dark clouds....

Friday, December 16, 2011

Aches and Pains

Some days it's just harder to get going than others. Today was one of those days. My tailbone is on fire from the Crohn's induced arthritis and it hurts to move.  I think I'm getting another mouth sore and I'm just tired.

At least I have my health right?????

Monday, December 12, 2011

Not all doctors are the same-be picky

When you get diagnosed with Crohn's disease there is always that feeling of huh?  I have what?  I remember the day my MD told me in 1986.  I actually said to him "you're making that up."  I had never heard of it before.  How could I have something I've never heard of?  After the initial shock wears off, you realize you need to have a good doctor by your side.

After thirty years of Crohn's, I have learned a thing or two about what I need in a good Gastrointestinal MD.  Believe me, if I don't like the MD I fire them.  I have no problem doing that and neither should you. This is someone you will be seeing a lot and you have to feel comfortable telling them everything they need to know.

When I had my fourth collapsed lung, the Pulmonologist assigned to me would not listen to what I had to say, what I wanted to do.  She only wanted to do what SHE said.  I fired her right then and asked her to please have another of her colleagues take care of me. Do I care if it made her upset? Nope not a bit.  This is MY health not hers that we are talking about.

I have become my own best advocate.  I am also a very bad patient.  Being a nurse doesn't help there either. I know what works for me and what doesn't.  I need a MD that doesn't treat me like a disease.  Nor treat me like I know nothing and need to be talked to like I'm 5.

When I moved to where I am now in 1998, I had to pick a new MD.  I ended up picking one in the GI practice I worked for.  For years I was hospitalized every 6 months for TPN and pain control.  I would call him up and say it's time to be admitted and he'd admit me.  But after awhile, he started treated me differently. Like I was a drug addict seeking my fix.  I had also tried to convince him that I needed TPN every day not just periodically whenever I got admitted.  He didn't want to hear anything I had to say.  He had made up his mind that I was a drug addict.  Even told my husband at the time what he thought.  Boy that really helped my marriage!

Finally I said to myself, why am I putting up with this? I KNOW that there has to be a better solution.  So I sought another MD.  That new MD immediately said I needed TPN every day and couldn't believe my other MD hadn't started that himself. I was so grateful that finally someone listened to me but I was also mad at myself for putting up with that other MD for so long letting him treat me like that.  Before the TPN, I weighed at most 101lbs, with TPN now I weigh 120lbs.  I have not been hospitalized since 2009.

Then one day, that MD told me he was leaving for another hospital.  I actually thought about moving wherever he went! So I had to pick another MD again. The first two I tried I fired.  One treated me like I was stupid and actually drew me pictures of the intestines.  Like after all this time I didn't know??? Trust me, I have read everything there is out there on Crohn's disease.  The other I just didn't feel a connection to.  I need to feel that to be comfortable. I finally found the MD I have now.  He is awesome. He hugs me every time and actually asks how I am besides the disease.  I tell him about other aspects of my life and he listens and remembers.  That's what makes a good MD to me.

What you have to do is decide what YOU need in a MD.  You may want someone who draws you pictures. It's something you need to figure out for yourself.  Once you do, don't stay with any MD that doesn't work for you.  Remember it is YOUR health not theirs....

Sunday, December 11, 2011

The map of my scars

As I was falling asleep last night, I thought about all the scars I have gotten since being diagnosed with Crohn's disease.  I figured I'd list them all here.

I will start from the legs up.  First on my left lower leg and my right lower leg I have one spot each of pyoderma gangrenosum.  Which is a fun skin lesion that Crohn's can cause.  It's been a long time since I had those.  When they were active, it looked like I had been shot in the legs.  Deep circular wounds that took forever to heal.

My most private scar is the one where my anus used to be.  This was removed and sown shut in 1995 when I had my ileostomy placed.  I tell people you can't call me an a**hole any more since I don't have one.  You see, I use humor to get through life.

Next up is my main scar.  The zipper that runs from the middle of my abdomen right below my boobs to my pubic area.  It bypasses my belly button so it is a crooked scar.  I always ask the surgeon to use the same line and try to clean up the scar each time so it doesn't get too huge.  This has been used nine times so far.

On my left lower back right below my shoulder blade I have a scar from a chest tube from 2002 when my lungs collapsed for the last time (so far).  On the left side of my body below my armpit is a chest tube scar.  This one has been used three times.  On my right is another chest tube scar.  This has been used once.

On my right chest above my boob is my port a cath scar.  This had been used twice. I got septic two times from my port.  My MD said no more ports for me. On my left arm near the crook of my elbow are various PICC scars.  I have been put on the DO NOT PICC list at my hospital since my veins suck and won't allow PICCs to be inserted anymore.  On that same left arm are my monthly blood draw dots.  I refuse to let anyone touch my Hickmann but me.  I do not want to be septic again.

Above my port scar on my right neck is  my liver biopsy scar.  They went through my neck down to my liver for a biopsy to see if I was getting early cirrhosis.  If so, that may mean a transplant someday. I am at least lucky so far that that is not happening yet.  On my left neck are various central line catheter scars.

When I think about all I have been through, how many times I have been hospitalized, poked and prodded, it's a wonder I still get up in the morning.  For me, it's what I know.  For me, I don't know anything different.

I have no idea what it is like to be normal and healthy. I wish I knew why me...

Saturday, December 10, 2011

The day I almost died

I have been thinking about the day I almost died lately.  I thought it might help if I wrote it down.

In May 2007, I had a procedure done to stop my periods.  It's called an endometrial ablation.  It's when they cauterize the lining of the uterus.  I had been having bleeding every day for months so I had this done.  It was Memorial day weekend.  My mom came to help me recover.  About five days later, I woke up feeling very badly.  It was a Thursday.  I took my temperature and it was 105.  Me being a nurse, couldn't believe my thermometer was right, plus I knew I could fix myself.  I knew what to do.

My neighbor came over and helped me put ice packs on myself.  Even though I had a high fever, I couldn't get warm.  I was piled with blankets.  I continued to check my temperature-105.  Then I started vomiting. It started to then freak me out.  I called my home health agency and they sent a nurse out to draw blood cultures.  At that time, I had a port a cath for my TPN and I was accessing it myself.  The nurse came and went.  I got weaker and weaker.  Finally, my neighbor called the ambulance.  It was the first time I'd ever been in an ambulance.  It's not a fun feeling.

My regular hospital where all my doctors were was full and they weren't accepting patients.  I was diverted to a local hospital.  I remember them being very worried that I had such a high fever and immediately admitted me. After a while, the doctor told me what was wrong.  I was septic.  This is a blood infection and very deadly. I was started on several antibiotics.  I continued spiking high fevers and vomiting.  I was so weak, I could barely make it to the bathroom.

I remember sleeping a lot.  I remember how bad I felt. My mom came to stay with me.  It had gotten to the scary point.  They could not get control of the infection.  Stupid me would not let them remove my port.  They finally determined that I had contracted Klebsiella which is a vaginal bacteria and must have happened during the ablation I had had.

I became jaundiced, my abdomen became swollen as my liver and spleen were irritated.  My blood counts dropped to a scary level.  I was given two units of blood.  My first blood transfusion ever.  I remember feeling so incredibly sick and scared.  I was barely alert, I was not responding to much.  It became a grave situation.

I remember the day like it was yesterday.  It was a Sunday.  My doctor came in and I just couldn't fight anymore.  Up to that point, I was still trying to fight but could tell I was losing.  That day, I told my doctor "I give up, I can't do this anymore."  My doctor knew what I was saying.  He immediately paged another MD who was on his day off and that MD came in wearing golf pants and a polo shirt.  I was immediately taken to radiology and my port was removed.  They had figured the foreign object was harboring the bacteria because whenever it was flushed, I spiked a high fever.

That was on Sunday.  I still remember that feeling that I knew I was going to die.  People who had visited me during that time, told me later how scared they felt seeing me lying there, that they thought I was dying.  When in fact, I was.  After my port was removed, things started to turn around.  The antibiotics started working, I started getting better.  I was there two weeks in total.

I still send a card to that MD every June to thank him for saving my life.  The weird thing is, I used to work with his dad, and he was a fairly new MD at that time. So I know I was his first patient that he had saved.  If he hadn't known me, maybe he wouldn't have fought so hard, I don't know.  What I do know is, I owe him my life.

When I look back at that time in my life, it really scares me.  I still remember how I felt when I told that MD that I had given up. I never thought I would ever give up like that.  I had hoped to never go through that again.

Little did I know that it would happen again......

Wednesday, December 7, 2011

Can you believe it?

Here is another memory for you.  Back when I first was hospitalized for my Crohn's disease, I was a smoker.  This was back in the late 80s.  Back then, hospitals had a smoking lounge for the patients and if the MD wrote an order, you could smoke in your room.  I remember spending all my time in the lounge smoking away. On the eve of my first surgery in 1989 my MD would not even bother going to my room, he'd find me in the lounge.  I couldn't eat or drink but man I could smoke.  And I did.

I was absolutely terrified of not waking up.  Plus since it was my first time, I had no idea what to expect.  I have had nine surgeries so far.  I am still terrified of not waking up.  I'm a pro at being a patient but trust me, the fear is still there.

Of course, now you can't smoke anywhere.  I quit smoking in 2002 but only after my lungs had collapsed 4 times.  The first three times was the MDs fault, dropping my lung while placing a central catheter. That was what I told myself anyway so I could keep smoking.  But the last time, was what they call a spontaneous pneumothorax.  This means that for no reason, your lung just collapses.  I was walking down the hall at work and felt it.

This scared the crap out of me.  I was hospitalized for two weeks with tubes in my side and in my back draining various things.  It was extremely painful.  I was told that if it collapses one more time I have to have lung surgery.  Now I'm a pro at belly surgery-but lung surgery?? Hell no. That scares the crap out of me.

I had smoked my last cigarette.....

Monday, December 5, 2011

Having a blah day

I am having one of those days where I just don't feel good. I can't tell you why-there is no one symptom I can give you. I just feel blah.  I wish I could have spent the day in bed with my cats.

Of course, that is not an option.  Some days I want to just lock myself in my house and not come out.  I think of all the times I have been hospitalized and label them as 'vacation from real life.' What else can you call it?  The last time I was hospitalized was March 2009.  I had my 9th abdominal surgery to remove adhesions and scar tissue that were causing partial blockages. I usually have surgery every three years or so and March 2012 is three years.  I am not having as many symptoms as I was then.  Maybe I will make it past March!

I am not an optimist.  I am a realist.  People say to me "you shouldn't think that way."  Well I do. It comes from almost 30 years of dealing with Crohn's disease.  Optimism went out the door a long time ago.

I have spent my life hiding my true feelings from every one. So much so that now I am all alone in life. Of course, I still have my parents-but they live far away.  I have isolated myself from friends and have no one to talk to about what's in my head.

That's one of the reasons I started this blog.  So I would have a place to state my real feelings unedited and unscripted.  I don't believe anyone will really be reading this-but if you are-I hope reading my thoughts helps you in dealing with your disease. Maybe your thoughts reflect mine and you won't feel so all alone.

It's so hard to have a life when you hook up to IVs at 5pm and go to bed then because the IVs run for 12 hours.  How much fun can it be to go out dragging your IV backpack and tubing with you?  Will there ever be another man in my life who will truly love me and be able to look passed my illness, ostomy and TPN dependence?  I sure hope so.  I don't want to spend the rest of my days alone.

If you are reading this and are isolating people like I have. STOP!  Let people in-let them know how you are doing and feeling.  Don't end up all alone like me.

Sunday, December 4, 2011

Memories that still hurt

I have had my ileostomy since 1995.  It was either that or be incontinent.  I remember having to write up a pros and cons list for my doctor to convince him that I really wanted and needed an ileostomy.  His exact words? "Who'd want to marry you with that?"  I couldn't believe my ears-really? That's how you base your decisions?  I said to him "Who's gonna marry me when I'm incontinent?"  You see, I was having so many anal fistulas that it was ruining my sphincter muscle.  It was inevitable.

Later on, I went on a date with this really great guy.  I had already decided that I was going to be up front with people. Why waste my time if they didn't want to deal with my ostomy?  We had such a great date.  At the end of that date, I told him about my illness and my ileostomy.  I still can see the look of horror and disgust on his face.  Like I had become untouchable with the plague.  Of course, I never heard from him again.  To this day, I still feel the pain of that look.

Another time, I was the charge nurse on the unit I was working.  We were listening to report when it was mentioned that this one particular patient had an ostomy.  The nurse I was with made a face and said "I'd rather die than have one of those!"  I turned to look at her, pulled my pants down and pointed to my ostomy and said, "what the f**k do you think this is?  You better watch what you say because you never know."  The nurse's face turned beet red and she never said another word about it.

Why is it that there are such shallow people out there who will treat you as a lesser person just because fate gave you something you never asked for?  I never can understand that.  Why there is such a stigma attached to it.

I can say that one day I did get married, went back to that doctor and said "see someone DID marry me."

Thursday, December 1, 2011

My mouth hurts

My mouth still hurts. The sore is right where my teeth meet in the back.  It has been there for almost a week now and it is really getting me down.  This is the only place where I get Crohn's now.  It was actually the very first place it showed up when I was 14.  Except back then I didn't know what it was.  Just thought they were canker sores.  I read once that that is an early sign of Crohn's disease in children.  Mouth sores.  I remember they used to cover the whole inside of my cheek.  I still remember that pain.

I have a Charlie Brown cartoon taped to my fridge.  It's been there for years.  It shows Charlie Brown lying in bed and he says "Sometimes I lie awake at night and wonder Why me?" Then a voice answers, "It's nothing personal, your name came up."  I try to believe that it is just randomness that gave me this hard life dealing with this disease.  Some days I wonder how much more do I have to go through?  Haven't I been through enough? I sometimes believe there has to be a higher purpose for me.  A better reason than randomness that I was chosen.  But after all this time, I still haven't figured it out yet.  Maybe I never will.....

Wednesday, November 30, 2011

Hey there

I wanted to start this blog so I could have a place to vent, or cry or just say what I'm thinking and feeling.  I hope to also be helpful to others with this disease.  Feel free to ask me anything, or leave your thoughts for me.

I'll start with a little bit about me.  I am 43 years old, am an RN and have had Crohn's disease now since I was 14.  Since then, I have had 9 bowel resections, 4 collapsed lungs, have an ileostomy, septic twice, almost died once, short bowel syndrome, a permanent IV catheter and daily TPN while I sleep to survive.  I now have only 6 feet of small intestine and no large intestine left.  My liver is being affected by the daily TPN and I hope that someday I won't need a liver transplant.

I have been through a lot.  And it still affects me every day. Lately, I get Crohn's sores in my mouth. I have one now. And it hurts.  It makes it hard to smile, talk, eat.  There is nothing that helps it.  It's just a constant reminder that I have a disease.  A disease that has never left me alone. Ever.