Truly a Crohn at heart...or, rather, at colon

(Warning: This could be a long story...sorry about that.)

In April, I started experiencing unexplainable abdominal pain.  It could show up any time of the day but was usually most severe right after I ate and in the evening.  I felt tired a lot of the time and I lost my appetite.  I blew it all off as a bug or a weird phase and I just kept on plugging through life.

Two months later things had not really changed and my husband and mother were noticing and beginning to be concerned.  The symptoms became more and more severe until I was rushing for a hot bath after dinner most nights to combat the abdominal discomfort.  I became very cautious about what I would eat because many foods just caused me too much pain if I ate them.  I also noticed my sense of taste had altered -- foods just didn't really taste good anymore and I had a weird metallic flavor in my mouth all the time (kind of like I was constantly sucking on a penny).

In June I finally went to see my doctor.  She is a great physician and I've always liked her even though I (thankfully) don't see her very often.  She listened to my symptoms, poked around on my tender tummy and sent me for a CT scan of the abdomen.  That afternoon she called with the results.  I had a massively inflamed colon and needed to see a gastroenterologist.  We went through a bunch of additional testing (blood samples, urine samples, stool samples -- oh the joy) and I headed to another doctor.

Long story short, I had a colonoscopy last Friday.  I am told that for most people that procedure is no big deal but I spent the night before trying (eventually unsuccessfully) to keep down the prep that you have to drink to flush your colon and then two excruciating hours after the colonoscopy pacing my hospital room waiting for my colon/stomach to release the air that had been pumped into them during the procedure.  I have never experienced so much pain in my life (sorry if you have to have a colonoscopy any time soon -- I hear for most people that it really isn't awful at all). 

My incredible gastroenterologist, Dr. Karnam (who called me sweetheart over and over and has a delicious East Indian accent...love that guy!) informed me that I have one of the worst cases of Crohn's disease he has ever seen. 

<-----------------------------This is what a normal healthy colon is supposed to look like.


These are the pictures of my colon (never thought we would be so personal here on my sweet little blog now did you?).

I have ulcers on top of ulcers and parts of my colon are so constricted that Dr. Karnam wondered how anything has been getting through at all.

The first day that I went to see my regular doctor (way back in June) I knew there was something very wrong (you don't usually have CT scans for nothing...besides her face just said "something is not right here").  After that first visit, I had been in the yard pulling weeds that afternoon when suddenly into my mind flashed the words, "You have Crohn's Disease."  That felt so true and right that I have had no doubt since that moment what the problem was.  I hurried into the house and read everything I could find about the disease because, to be honest, I knew absolutely nothing about it before that moment.

For those of you who are like I was, Crohn's Disease is a chronic autoimmune disorder.  Basically what happens is that your body identifies food and good bacteria and other healthy bits as dangerous invaders so it floods your colon (or other digestive system because Crohn's can affect anything from your throat to your anus) with white blood cells which try to fight off the infection that isn't really an infection which causes inflammation, ulcerations and real infections.  These can be very dangerous as they can create tunnels (called fistulas) from your colon to other organs and can even allow bile to seep into other parts of your body.  Crohn's Disease can also cause arthritis, vision problems, skin troubles and malnutrition leading to weak bones etc.  Sounds like fun eh?  (Seriously, it could be soooo much worse, so I am not trying to sound all doom and gloom). 

There is no cure for Crohn's Disease.  There are medications that can ease symptoms and help doctors try to "induce remission" but there will always be flare ups and times of "relapse."  That's just the way it is.  That is not exactly what I was hoping to hear. (Wow, that really sounds whiny..sorry, things could be so much worse and I'm glad that they aren't.)

However, I have much to be grateful for.  First of all, I am surrounded by capable and kind doctors who have helped me get to the bottom of the problem...and there are treatments that can help -- I don't just have to suffer without any relief.   Secondly, despite having a fairly severe case, my symptoms have not been nearly as bad as some people that I have read about.  With a house full of small children and a husband who works a lot and is in school as well that is a gigantic blessing.

For months, come afternoon, I often feel spent and I just want to go lie down and check out.  However God made me very stubborn (I'm not sure Josh would always classify that as a blessing) and early on I decided I was not going to let this disease rule me, I was going to rule it.  I will NOT let an illness control my life (and thankfully so far I've been blessed with enough umph to manage that).  I don't always get as much done as I would like, but I get something done and I have been able to find great joy in those successes.

In the past I would often beat myself up for not accomplishing everything I wanted to in a day (and often my expectations were ridiculous so I was just setting myself up for failure).  Having this struggle has taught me to smile at the things I do accomplish, be pleased with what I did do and to save the rest for later. 

I am also learning to focus more on what matters most.  I find myself saying, "My children need me to read them a story, I can sit here in pain and whine to myself or I can take my pain in the other room and spend the time with my little ones."  I have learned so much already from this trial and I've only been facing it for a few months. 

I am not happy to have Crohn's Disease.  I would love to snap my fingers and have it vanish.  I don't want the medications and their side affects for the rest of my life.  I don't want the flare ups and worry about whether my children will have to endure this.  However, I can see the blessings that have come to me already as I have had to battle this dragon and I can only imagine that a God who loves me more than I understand has many more blessings in store for me. 

So, I guess, bring on the Crohn's.  I have a lot more life to live and I know with the help of my family and my Father in Heaven it will be a beautiful journey.

(P.S. I asked Josh what it was like to be married to an old Crohn...he said he didn't know because he married to a young Crohn.  Trust Josh to help me laugh my way through whatever comes.)