An Online Enemy of Sorts

I've been searching all night for blogs of others with Crohn's Disease in hopes of finding someone else's journey that I could relate to or see how this wonderful and lovely (major sarcasm there) disease affects others.  I have to say that they are not many.  That's a good and a bad thing depending on which way you care to look at it.  What ending up happening though was that I had a revelation that thoroughly freaked me out and is definitely not healthy for my state of being at the moment.

Everyone's journey with Crohn's Disease is different.  It unfortunately has the capability to jump all over your digestive tract which is why everyone does not respond the same to the disease or treatments.  I've never found anyone with likeness to my journey.

Here's the shortened (ha ha... that's a joke) version my last 14+ year journey with Crohn's: 

I was diagnosed at 15 with Ulcerative Colitis after being told for a month that it was just a really bad stomach flu (thank goodness for my strong willed amazing mother who knew better than that).  I was immediately put on Salfasalazine and after a while I started to feel better so I weaned myself off of it.  The spring of my Jr year in h.s.  I became extremely ill again, went back on the meds, and immediately made an appointment to see a G.I. (which was booked until July).  By the 4th of July I was so sick that I could eat and couldn't take my meds because I threw EVERYTHING up, even water.  My amazing boyfriend (now husband) spent those last few days carrying me around because I was too weak to stand longer than a few moments.  On the day of my appointment, the G.I. took one look at me and said that she was admitting me into the hospital and we could talk after I was checked in.  That first stay at Doernbecher's Children's Hospital was 31 days.  During which time I was put on TPN (a feeding tube that bypasses the stomach) so that my colon could rest but it didn't do what they'd hoped and 3 weeks into my journey they let me know that I needed to have my colon removed. My family prayed and talked but the doctors said that at this point there wasn't any other choice. They showed me the horrible pictures of what my poor colon looked like but it wasn't until after I came out of surgery that they told me that if I hadn't gone with the surgery when I did or even at all, that my colon would have burst and all that poison in there would have killed me.  This also was the first I'd heard of Crohn's (the un-curable sibling to U.C.) but they wouldn't know one way or the other til they looked at it during surgery.  Best case scenario they should be able to create a j-pouch on the inside with my small intestines so I wouldn't have to have a permanent colostomy on the outside of my body at 17.  The whole process would take 3 surgeries to complete during the course of next 6 months (wasn't quite how I thought of spending my senior year in h.s.).  Surgery went well and they were 100% sure they were dealing with U.C. and not Crohn's which meaned that life would go on as normal after I healed because without a colon you can't have U.C.  I made it through my senior year very exhausted, not at school a whole lot, and a little cautious (hiding a temporary ileostomy can do that to a teenage girl) but with high hopes for the future.

I started college that next fall really excited but still feeling really exhausted.  I kept getting what they called pouchitis - an infection to the little reservoir they'd created for me.  I also never returned the health they expected me to.  During my sophomore year I lost my health insurance and it all started down hill from there.  That summer I exhausted myself that my anemia became so bad that my legs became covered in welts that looked like someone had hit me repeatedly with a baseball bat.  From there I got my first fistula.  I had no idea what was going on or what it was and no doctor to talk to.  I went to the emergency room and came home in tears because the doctor had no idea what I was talking about tried to tell me it was an STD (I was a virgin and not sexually active).  It would heal and go away and then return.  I was hospitalized many times over the course of my Jr and senior year in college and it even caused it so that I only completely my degree as far as I could to graduate... completely missing out on completing my program and student teaching.

It wasn't until after college that my mom could get me on her health insurance for a short while.  I went back to the doctor and they kept saying how they must have missed some of the U.C.  It wasn't until I had a major fistula that sent me to the emergency room that we finally started talking about Crohn's.  The light bulb:  U.C. doesn't have fistulas but Crohn's does... and Crohn's is not curable.  I then found out the next big blow.  In Crohn's you never want to do a complete removal of an organ because the disease will just attack another digestive organ, you are just supposed to do re-sectioning.  But I'll never know if the right choice was made to just take it all out... I mean I saw the pictures and they were really bad... but my doctor's not around to ask, he's now called Dr. Death and sitting in jail after being charged with errors that caused the deaths of many of his patients... but who's to say whether it was a mistake or it was just the way that my path with this disease was taking.  I lost my insurance again due to age but got set up with a Dr during one fistula surgery that was willing to help out however he could.  He got me set up with Pentasa and infusions of Remicade but both were too expensive without insurance that I was told I couldn't continue without paying my bill.  I really wasn't on it long enough to know if it worked but once off you can't go back because you become allergic.

This roller coaster has been they craziest thing.  It's only gotten worse as time has gone on.  My worst fistula was 2 years ago and came 3 months before we got married.  This one decided to travel outside of my digestive tract into another organ and I had to take an entire month off of work to re-cooperate... re-cooperate, not heal.  My poor husband, being married to me must be a nightmare.  Neither one of us had any clue that the road was about to get so bumpy... nothing in the past 11 years of our relationship had prepared us for the newness Crohn's had in store for our future.  Each fistula has gotten worse... to the point that I'm starting Humira next week (which I've done everything possible to avoid).

Thinking about my journey and everyone else's tonight is what freaked me out so much.  Tonight I saw a picture of a woman who had a fistula that traveled out to her tummy by attacking a scar from a previous surgery.  Sounds disgusting and scary but it's not what scared me.  What scared me is:

1. I can control most of this disease but I can't control the fistulas. From what I've read, anyone who's ever "cured" their Crohn's has never had a fistula.
2. I can't have a resection to remove part of the disease like everyone else because none of my fistulas begin in any place that can be removed without removing the little hope that I have for not having a permanent colostomy for the rest of my life.  As my Dr says, we loose that and we loose all other options.
3.  If these injections don't work, outside of some miraculous healing, I am out of options
4.  I'm scared -- I can't stand admitting it but I am.  I've been strong for 14+ years.  I'm always the optimist.  I'm not worried about getting through this... I have a blessed life and will no matter what.  But how am I going to feel if it doesn't work and this disease will have stomped on every path I thought I was supposed to travel down.  What will happen to the things that I cherish most if this same path keeps it's unending circular shape and nothing changes?!?!

Sorry to unload this but I can't wake up the hubby to confess my fears because we both have to be at work in a couple hours and he needs his sleep. 

Just goes to show you that all the information on the Internet isn't good for you ;)

Quick Update

It's been almost exactly two weeks to the hour since I got out of surgery and I have to say that I've felt better.  Overall, I have been doing much better but this recovery is a lot sorer than some of the other times.  Just when I think that I'm well on the road of recovery my body will just start aching (for lack of a better word) all over again. But I'd definitely rather deal with this than how I felt pre-surgery any day :)

The real update though is that I heard from the company who was setting up getting me on the Humira and... the order is being processed and will be here on Tuesday.  Completely freaking out here!!!  I called the Dr's office and we have my teaching and first injection set up for Thursday.  Ugh, one week from today.  I am still a mix of emotions but I know that God's not going to put me in any situation that I can't handle either way it goes.  Thank you God for that!!!  So we shall see.  I welcome all of your thoughts and prayers these next few weeks.  I'm going to need them!!!

I know this is a fairly unknown disease and topic for some so if you have any questions... just ask!!!  Education is the key, not to mention that talking about it helps me sort out what I know and feel :)

I'm Going Left... No, I Mean Right

So, I failed....

Not really, but my number one and two priorities didn't happen.  Apparently someone had other plans for me.  I managed to barely make it through my husband's 30th birthday weekend extravaganza with some major help from a dear friend and one of my sister-in-laws (thanks ladies).  It was only by the grace of God that I physically made it through though.  That weekend plus two days of struggling through work and my body put it's foot down on my priorities.  One crying phone call to my boss about how sorry I was that I couldn't even stand up long enough to get ready for work and I knew that this wasn't going to get any better.  I got off of the phone with her and made the call to my Dr's office.  The first response was that she (my doctor) was booked all the way out til June but since I was in bad shape they were going to find her to see what she could do.  A matter of minutes later they were calling me back to say that my surgeon saw this and wanted to see me the next day after he got out of surgery... aww crap was all I could say, however as far I knew at this point he could also take one look at me and say that it looks like it hurts but nothing's infected yet and I was going to have to wait it out.

Talk about one of the longest and painfullest nights of my life.

The next afternoon I had the hubby drive me to OHSU.  Definitely shouldn't have been driving myself for sure and it also was a precaution so that I wouldn't be alone just in case the worse case scenario happened (surgery).  I don't think that I've ever waited so long to see a doctor... but I knew exactly why it was taking so long.  See, my surgeon has known me long enough to know that if I actually drag my butt into their office then there is something really wrong, so he was putting other patients in front of me so that he would be able to take me right into surgery if needed.  The problem was that the longer I waited though the more worried I got that there wasn't going to be anything that he could do and I was going to leave in the same amount of pain that I arrived in but with a more than irritated hubby who'd been sitting in the waiting room for well over an hour at this point.  His medical student kept on checking on me and asking me more questions which I have to say was making me a little crazy.  Finally my surgeon walked into the door.  He asked me two questions and immediately after I answered said, "Well you know I'm going to have to take a look now." "I kind of figured that," was all I could say.  A two second peek and response of, "Ohhh-kayyy" was all I got.  Darn it, I knew what that meant.  We went through the same routine:  well, it's definitely an abscess... dang it... well, I can try and drain it here... um okay, but you know how well I do with that...  well, you'll feel some instant relief if it works...  okay, but you'd better get my husband so I can break his hand.  Hubby comes in the room thinking who knows what and my Dr sits him down and shows him how to hold his hand and fingers so I don't break them while he makes the incision.  A little numbing and it's time to do this.  One cut and I scream and I do mean scream... whole body, head to toe, no way of controlling it scream.  I've only screamed twice in my life before this and the first time was the first and last time he'd tried to do this same thing 2.5 years prior and the second was in the car after wards on the ride up to the hospital because by trying to drain it only made it worse.  Instantly I started to sob... the tears flowed for so many reasons.  I cried for feeling like a baby because I felt like I should be able to take the pain.  I cried because I screamed.  I cried because of the pain.  I cried because I knew that because he couldn't get it drained that he'd have to do surgery. 

I get myself back in check because this is my reality... this is my life.

We sign all the consent forms and he tells me that he wants me to stay overnight this time so we need to get headed up to the hospital to get checked into my room before surgery.  It's getting late and hubby has to be up for work at 4am so I call my parents to come so he can go home but of course he won't go until he's sure that it all goes okay.  Surgery gets scheduled for 11pm and I am still in the process of getting checked into my room when all of a sudden they're at the door to take me to surgery 2 1/2 hours early... guess that's one way to not have time to get nervous.  A few questions from the doctors and a few kisses from my wonderful husband and it was off to sleep for me. 

The surgery went fine but they found a lot more infection and damage than anticipated which was why trying to drain it in the clinic didn't work.  I woke up with another seton in, which was exactly what I'd asked them not to do if at all possible but as the Dr said, "we didn't have a choice, it was that bad." 

It's been a little over a week since surgery and for the most part I'm doing better but it's still very sore and at times painful.  According to my actual G.I. doctor though I'm doing better than she expected.  She told me today that she's surprised I can even sit upright comfortably.  Thank God for my high pain tolerance is all I can say to that!!!  This surgery though has brought me to the bottom of the barrel though in regards to what choices I have left without allowing them to take more of my organs from me.  I have gotten all upper digestive attacks under control but everything lower is still under attack with no apparent signs of ceasing.  The morning after my surgery my G.I. doctor told me that she was going to start pushing me on the Humira issue and that I needed to give it a try.  I've been praying and asking for prayer all week.  It's in the process of being approved through insurance and should be here next week.  Some parts of me are totally at peace with this and others are completely freaking out. I'm asking for more prayers!!!  The usual saying that it doesn't hurt to try doesn't apply here and there is no guarantee that it will work.  The possible and probable side effects of this medication aren't something that I am taking lightly but at the same time, neither is my quality of life... and right now, I want it back!!!  Please join me in prayer and send me a message if you'd like some more specifics.  I am grateful for any support I can get!!!