Health Update

I broke down on Monday and agreed to have the colonoscopy I so vehemently refused a couple weeks ago.  I realized my doctor wasn't going to leave the issue alone nor would he be comfortable making future health decisions without first hand knowledge of what exactly was going on inside.

For those of you who have never had the priveledge of having a colonoscopy, you are really missing out.  If you are getting complete anesthesia, the preperation beforehand really is the worst part of the whole deal.  Because doctors need your whole digestive system to be cleaned out, you have to drink massive amounts of fluids mixed with different laxatives the night before.  In the past I've had to mix mine with Sprite and Capri Sun.  Needless to say, I can drink neither to this day.  And although this prep wasn't that bad this time around, I won't be touching a bottle of blue gatorade for a while.

So I arrived for my appointment at 7 am after getting a total of 45 minutes sleep the night before.  Around 8 am they started me going with fluids and medicine to relax me.  I was visibly anxious and slightly emotional the whole time.  In case you didn't know, I had my bowel perforated during a colonoscopy before and laid there for four complaining of pain before anyone recognized something was wrong.  I've had colonoscopies since then but it's always something I think about especially when I'm flaring and my bowel is prone to perforation.

I had the procedure done at Penn Presbyterian hospital where I see my doctor.  I must say, it was the most comfortable colonoscopy I have ever had done and the staff was beyond accomodating.  Thankfully at Penn Presby, they completely sedate you.  I woke up from the procedure about 30 minutes later.  The last thing I remember was them telling me to lay on my left side and get comfortable like I would at home.  And I was out.

Now before the procedure the doctor asked me if I would like my bowel dialiated if they came across a serious narrowing.  Dialation would allow them to pass the scope around the narrowing to figure out what was beyond.  I told them No, basically, because that's exactly how my bowel perforated before.  I didn't wanna go down that road again.

So after being in recovery and getting to see my momma, the doctor came in with the results.  I was still pretty woozy as he explained the severe inflammation I have in my bum and lower colon.  Thankfully there's some healthy large bowel beyond that but they were concerned about a narrowing and abandoned the procedure when they reached the point where my small and large bowel met.

This meant that I needed to have another procedure, called a barium enema, to determine the extent of the narrowing.  Oh...My...God.  I have never had this done before and had I known how horrible it was, I would have agreed to dialation during the colonoscopy.  After my doctor lying and telling me it would "only take 10 minutes", I went to another department to have that done.  Basically, without going into too much detail, they stick a tube in you and shoot barium up there all while having you move in ridiculous poses while they take xrays.  Keep in mind the tube is still up there while you are being told to lie on your stomach, side, standing up, on your back, etc.  It was a very uncomfortable exam.

So the good news; the barium enema showed no stricture like they thought during the colonoscopy.  Apparently it was just my appendix.  Whatever that means.  The bad news; the severe inflamation at the lower end and the discovery of a fistula and possibly an abcess.  I already had an inclination that I had a fistula for a while now but didn't really say anything about those symptoms.  I don't know how to explain it so I'll just give you the dictionary definition. A fistula is, "an abnormal passage leading from an abcess or hallow organ to another organ permitting passage of fluids or secretion."  It's a lot more complicated then that but I will spare you the details.  Basically, the fisutla is like a crack in my intestine from all the damage inside whereby bodily fluids flow to places they aren't supposed to be.  Therefore, you develop a pocket of infection (abscess) somewhere in the body.  I have to get an MRI in a couple of weeks to determine if in fact I do have an abscess.  From what I've read and heard from people, an abscess can be quite serious and almost always needs surgical intervention.

While my doctor waits for the results of my biopsies, I need to consider the next move.  We briefly discussed several options as far as medicine.  Some of them have serious side effects regarding fertility and paralysis.  Scary stuff.  He also mentioned surgery to give me a permanent colostomy.  This would most likely give me my life back but at the risk of a whole host of new issues.  Not ready to even think about that yet. 

I just had the procedure yesterday (Tuesday) and I've already been contacted by my doctor and various hospital peoples about 5 or 6 times.  It's kind of scary and the fact that my doctor himself has called 3 times has me worried that he really doesn't know what the hell is going on.

Lots to think about.  In the meantime I'll keep taking Humira.  My hope for it hasn't died quite yet.


The important things in life.

Today I drove my mom to work and on the ride home I came across this man I labeled "skinny bald guy" back when I would go running through my neighborhood.  I know---so original.  Anyway, I usually ran into skinny bald guy when I decided to run in the after dinner hours during the summer and into fall.  I don't know if any of you have had similar experiences while running.  Sometimes your schedule just happens to mesh up with someone else's and you find yourself crossing paths routinely.  And as the routine of seeing them develops you can't help but wonder how far they've already run and where they are running to.  In a strange way, you feel connected because you respect that they are out there pounding the pavement just like you.

Skinny bald guy seemed to be an intense runner like me and our paths usually crossed at the beginning of my run on Martins Mill Road.  For those of you who aren't familiar with it, Martins Mill has a huge hill that roughly stretches a quarter mile.  Not that far distance but the hill is intense.  It's the perfect ending to a long run and regardless of how tired I am when I am at the top, I have a smile across my red, sweaty face when I'm done.  I love it.

Typically I'd start and end my run with this hill.  I usually ran into skinny bald guy when I was running down the hill and he was coming up.  We exchanged polite nods and in my superficiality always thought, I hope he knows I actually run up this hill, too.  I know, it's stupid.

But it reminded me how much I miss running.  I miss my daily runners high.  I miss running miles and miles and feeling like I could have kept going if it wasn't so late and dark outside.  I miss singing along to my ipod even though most of the areas I ran in were highly populated with traffic and people could hear me from their cars as they sat at red lights and I coasted along.  I miss getting past that point where I thought I couldn't keep going but did anyway.  Most of all, I miss feeling strong.

That's just one of those things this illness, and many others, takes from those afflicted.  You are kind of a bystander who is no longer in control of your body.  It's inevitable that you grow weak and lose muscle.  Running was so much a part of my life; who I was, my confidence, my routine, and an outlet for my frustrations.  When you take something like that away, it's difficult to find something else within your reach that can fulfill all of that.  I haven't quite found anything else that compares.

I am hopeful that when I shake all of this and run into skinny bald guy again, we'll exchange our polite sympathy nods like usual.  Maybe he will assume I took a winter hiatus to the treadmill.  But regardless, I will be back.


No Questions Asked

A big part of Crohn's is the daily struggle of trying to remain nourished and have a good relationship with food.  It's hard because I love eating and cooking, yet food can sometimes be my nemesis.  I'm lucky right now that I do have an appetite.  Therefore I struggle with knowing that something which tastes so good is going to make me miserable later on.  

When I was diagnosed in 2002, the first book on Crohn's Disease I got was given to me by my dad.  It's called Breaking the Vicious Cycle.  It is a book that outlines the principles of a diet called the Specific Carbohydrate Diet (SCD).  The last thing I wanted to think about at that time was a diet to cure my problems.  I flipped through it and tossed it in my family's bookcase in the kitchen.  I never thought I'd open it again.

Through the years I have heard people talk about SCD and every single one of these people raved about how it had changed their lives.  More recently at a trip to the eye doctor, the doctor told me how his son is my age and he has Crohn's.  His son has been on the diet for four years.  In the doctors words, "He's skinny as hell, but he's the healthiest he's ever been."  

There is no widely accepted scientific evidence that following a certain diet can put one's disease into remission.  Crohn's is not like Celiac Disease where people can remove gluten from their diet and usually return to normalcy.  Therefore, the SCD has faced some criticism among the medical community.  However, one study suggests over the past 50 years, 75% of those who adhered strictly to the diet saw significant improvement.

With that said, if I chose to attempt the SCD, I would have to make serious lifestyle changes.  I'm talking major stuff.  I'd have to get my family on board to stop stocking the house with my favorites like twizzlers and lebanon bologne.  Without going into too much science, the idea is that we need to return our bodies to the way we ate before chemical addictives, complex carbs, and sugars entered our diet.  So basically, I need to rewind 10,000 years and eat like...a caveman?  I'm not sure which phase of human evolution we were at 10,000 years ago but you get the point.  It makes sense when I think about it because Crohn's is a disease of modernized countries.  

Now this would be a huge lifestyle change requiring me to meticulously plan meals ahead of time, making many things from scratch.  One of these is yogurt, which is a crucial part of the diet because of the benefits the bacteria in yogurt provides.  However, am I really up for making my own yogurt?  Am I really capable of drinking my coffee black, with only honey to sweeten it!?!?  Can I give up beer????? Is this humanly possible?

I've been thinking about this for the past month and it is going to take a lot of planning and self-control if I want to do this.  But like everything in life, I go balls to the wall.  I know that if I commit to it I will follow through.  And really, when it comes down to it, this is the only possible solution that gives me control of this situation.  If there's something out there that can make me feel better, I might as well give it a try, right?

I think in the past I was always skeptical that something so minor as changing my diet could help me feel better.  While SCD is beyond simply avoiding spicy foods and raw vegetables, no one wants to think that something they are putting in their body is the cause of their own misery.  Especially with a disease that already faces so many misconceptions and you are already subject to feeling like other people think it's your fault for being sick.  When it comes down to it, I want to be able to say that I have done everything in my power to help myself.

With the research I've done the past month and asking around, I know it will be easy to find someone who is familiar with a gluten-free diet but I'd rather find someone specifically familiar with SCD.  If anyone knows someone, let me know.  Also, it would be nice to even talk to someone who is on a gluten-free diet.  I'd just like to get a little perspective and maybe hear for myself how much their diet changes have helped.  Maybe hearing it will motivate me more.

In the meantime, I'll be hoping the increase of my injections to once a week start helping.  It's been a wild one the past couple weeks.


When does cabin fever become a real problem? Week 10.

I got in a discussion with a friend today about the current state of my Crohn's.  I was trying to explain how my doctor wanted a colonoscopy done this Tuesday but I was planning on objecting.  My friend was curious as to why I would deny something that is seemingly going to give my doctor a peek at what's going on inside.  I'll try to have you understanding my point by the end of this entry.

When I moved back home, I had to find a new doctor who has only seen me in his office three times.  I have a closer relationship with my mailman.  I guess the point is, this is my body and my illness.  It's my life, my insides, my dignity.  I think in the past I always did what my doctors ordered, even when I felt I was being tortured.  I have learned it's okay to say "no" to having three different procedures done in one day.  It's okay to draw a line.  

The last thing I want right now is to be prodded for a cause that is only going to tell my doctor what we already know from my symptoms.  Unless being done to facilitate with a future surgery, diagnose an unknown problem, or figure out a new problem, I've found most of my yearly colonoscopies completely unnecessary.  Sure, I'll get one every four years like I'm supposed to but I really don't need you going up my bum to tell me that my colon is inflamed.  We know this already. 

Now it might seem incredibly silly to someone without a chronic illness, but I miss my old doctor in Maryland.  I saw him and his staff more than I saw my own family during college.  I figure between treatments, procedures, and check ups, I was at that hospital once every month for four years.  I liked them so much that even after moving back to Philly, I spent a year driving to Baltimore every time I needed an infusion or check up.  

When considering something as serious as my struggle with illness, it's been hard to move on to a doctor who handles things differently.  It's a significant relationship on my end; one that requires trust and respect.  And I don't think I quite click with the new guy.  While he is highly respected in his field and was referred by my doctor in Maryland, we have differences in how to deal with my illness.  Differences that I don't always think he respects.

I think that is what I am struggling with now.  I'm not really sure what the point of all of this was.  Maybe I am trying to say that there is no reason anyone should settle regardless of who they are dealing with.  Regardless of the situation, unless you are going to die in the next 5 minutes, you should consider all important matters of life with much reflection and care.  I went through a lot of doctors who mismanaged my illness before I found one who met my expectations.  Maybe I need to keep looking.  Jeeze, I sound like I'm talking about a boyfriend or something. 

Side note: I had a witty, uplifting blog written before all this colonoscopy nonsense came up.  I'll save it for later.  As far as my health, things are still crappy, despite my seemingly short two day reprive weeks ago.  Oh, and I'm not saying you shouldn't get a Colonoscopy when you need one.  But I don't.  So to my faithful, over 40 readers (hi mom and dad), go get those pipes checked out.  However, don't count on me to tell you the prep "isn't that bad".