My day has come...

Warning: This blog might gross some of you out.  Or confuse you.  Either way, proceed with caution :)

I had my visit with my surgeon yesterday (Wednesday) to discuss and schedule the procedure. I had one of the most unpleasant doctors office visits of my life. My appointment was at 10:45 in the same office I went to when I had to get my drains taken out after my last surgery.  I thought maybe the ridiculous waiting from my last visit might have just been a fluke, but no, it was just as bad this time around, if not worse.

As soon as I arrived in the waiting room I knew it was trouble.  It was packed and I was extremely uncomfortable sitting in those lovely wooden chairs with people staring at me because I was curled over in my chair, obviously hurting. By the time 11:15 rolled around I had rearranged the chairs so I could lay my head on my moms lap while she eased some of my nausea and tried to distract me from the pain.  I didn't get called in the room until noon after the waiting area had cleared out of every single person.  I was literally the only one left.

Call me crazy but I think the one instance in which efficiency and courtesy should be the utmost priority is in the healthcare industry.  People are sick and I wish I could impart an ounce of my pain on them just so they understand.  It is a business and as a business I can't quite understand how they don't have appointments and timing down.  When I go to visit my GI doctor, I am seen right away and there is no bullshit.  As a very sick patient, I appreciate this more than you could imagine.  Anyway, sorry if most of this is just me bitching.

So I get to the next room--the actual examination room where at least I can lay down with a sheet.  I'm there for 45 minutes before I see the surgeon.  Once he comes in it's the usual run down of questions referring to my previous surgery in Maryland and questions about how much of my bowel was removed as well as what kind of ostomy I had.  Basically, the surgeon did not have my records nor did they indicate that I should bring them.  After calling my GI, they had to contact the University of Maryland Medical Center for my surgery report in order to determine how they would approach surgery this time around.  The report was crucial to understanding if I would be given an Illeostomy or Colostomy (more on that later).

It isn't until 2:30...yes, I laid on the table in that small ass room from noon till 2:30...that they finally get a pathology report faxed concerning my surgery (conveniently the 31 page surgery report arrives as I'm on my way out) .  Of course, the pathology report isn't sufficient enough but the surgeon gives up and decides to start the consultation anyway.  He proceeds to tell me, "Well, we won't really know anything until we open you up anyway."  Umm seriously? All that time laying there...waiting...was basically for nothing.  The consent for surgery I signed basically says anything can happen and I might not get a colostomy like I prefer.  Also, they cannot operate laproscopically since I've already had surgery and there is likely to be a lot of scar tissue in the way. BUMMER...because this means a longer recovery time and more pain.  And just when my scars were starting to switch from gross and discusting to barely visible and "cool"...but oh well, it's not like I was ever the type to rock my bikini on the beach.

So the biggest issue is an Illeostomy vs. Colostomy.  A colostomy is what I had previously.  In this instance the diversion is created so that your waste still travels through your large bowel. Without grossing some of you out, this means that your output will be closest to "normal" that you can get with half your intestine missing. But this plan rests on the healthiness of my remaining colon. The last thing you would want is to still have pain after surgery. With an Illeostomy, the diversion is created right after your small bowel so your waste never goes through your large bowel.  Thus you miss out on all the digestion that occurs normally in your large bowel.  As I stated before, I had to consent to either/or because they won't really know until they see inside.

The important factor in all of this is that afterwards my rectum will be bypassed, where most of my disease is active and painful.  If all goes to plan, I should be feeling better and able to finally function in my life. Thankfully the past couple of days I've had pain meds from my family doc which have made things bearable...I just don't understand why my GI can't offer me this relief.

So surgery day will be August 13th.  I'm guessing I'll be in the hospital around a week.  I'm trying not to think about it too much or second guess my decision.  I know it's the right one.  I just have to keep reminding myself that.


Crohn's Sucks.

Miraculously my doctor did not want to hospitalize me on Tuesday.  I don't know how or why but I was so certain I was going to be admitted that I was actually looking forward to the jolt of energy I might get from fluids and blood.  

Basically the appointment revolved around discussing my surgery and being violated like usual anytime I step in a hospital.  It wasn't very pleasant sitting in that small room with two doctors asking me the routine 100 questions about the state of my disease.  I was in a lot of pain towards the end and I can't quite understand how they could look at me and send me home with no pain meds. Right now I'm on antibiotics and some other crap that doesn't do anything. If you can understand, it's quite frustrating.

On the way out the door, my doctor turned to me and said, "Well, it only took you 6 months but you finally made the right decision."  I wanted to punch him in the face.  Seriously buddy, it's not an easy decision to opt for a colostomy when you are a 20-something female.  It's kind of a big deal.  He then proceeded to tell me about the woman before my appointment who has been living with hers for 10 years happily and if she can do it, so can I.  But that's not the issue. I know I can do it and I know it will make me healthier. It's the idea of not knowing how long I'll need it, not being able to rock those skin tight shirts you all know I love to wear, and not to mention the worry of being out somewhere and having a technical difficulty with the colostomy. Those aren't fun.

So the appointment with the actual surgeon isn't until July 29th and I want to cry.  My doctor gave me the impression they would be able to operate on me by next week.  I really don't know how I'm going to hold out for 2 weeks and then probably another week before the surgery. Living for 3 more weeks the way I have been living recently will be torture and I really don't know if I'll be able to make it.  I feel like I've gotten worse the past couple weeks.  I'm not on the Methotrexate anymore so who knows, maybe it was doing something, even if it was minimal.

For now, time to order some colostomy supplies and get myself ready for what's in store.  If I had my way I'd drink that nasty shit to clean out my system right now and have the surgery tomorrow.  I just want my life back.


When life hands you lemons...

For someone who is extremely indecisive about the simplest things in life, I've had to make some pretty serious decisions in the past couple of months.  I found myself making one of the biggest decisions I have ever had to make this past week.  I'm not sure if it was so much of me finally deciding something as much as it was me coming to the realization that the situation I am in right now is dire need of a surefire solution.  No more experimentation with drugs that take weeks to work only to find out they aren't going to work for me.

After months of believing one of these crazy drugs was going to work or that some miracle was going to magically make me feel better, I realized I have to go down the path I have avoided these past six months--surgery.  Although a difficult and life changing decision, I have decided the only way to get my life back is to have surgery which will give me a colostomy.  All this time the thought of having a colostomy again with no idea of when it could or would be reversed made me think my life would be over.  But really, being sick in this bed, losing weight, losing my hair, being in pain, running to the bathroom, missing out on summer fun...what kind of life is that?

I go to see my GI on Tuesday and I am 99% sure they will admit me to the hospital after my appointment.  We're gonna talk about the surgery then.  I have no idea how soon they will be able to do it or if they will want to administer Total Parenteral Nutrition (TPN) to me first to get me to a healthier state.  I can't imagine having surgery at this weight knowing there would be about 4-5 days of not eating.  

If there's anything good from this, it is that I have had a colostomy before and I know what to expect.  My life right now is such misery that a colostomy doesn't seem all that bad.  All I can do is close my eyes and think about all the things I will be able to do once I have this surgery. I want to sit on the beach, drink a few beers, eat some greasy food, hang out with friends...

Hopefully I will be able to keep you updated when I'm in the hospital.  Maybe things will be better once I get some fluids and blood.  At this point they can't get much worse.