Crohn's Disease

I'm thinking that I've probably mentioned this somewhere on my blog, at some time, but I can't remember for sure. And, since I'm fairly certain that the majority of people who read this blog are people who know me personally, you all probably already know this. But anyway...I have Crohn's Disease. I was diagnosed in 2006 after having Robbie and experiencing symptoms throughout my pregnancy. I experienced symptoms throughout my pregnancy with Mary as well, but they went away immediately after having her (like while I was still in the hospital) and didn't come back (well, till pregnant with Robbie), so I never got it checked out back then.

Little did I know that the symptoms I experienced with my pregnancies were really NOTHING compared to what Crohn's can do. And frankly, I know little now (thank God). But I know more than I used to (unfortunately).

I'm bringing this up now because 2012 has been a rough year for me and my lovely Crohn's. But, let's give some background for those who don't know the gritty details. Yup. I'm sure you all really want to know all about my Crohnsing....if you don't, move on...there's nothing to read here! ; )

So, as I was saying, in 2006 after giving birth to Robbie I was still having issues. I wasn't having any pain perse, just things no one wants to talk about happening in the bathroom. My OB was well aware of these problems because they started around my 20th week of pregnancy with Robbie (and around my 17th week of pregnancy with Mary). No pain, just a red toilet EVERY time I attempted to go...not something a pregnant woman wants to see when she's on the toilet! Let me tell you how much it freaked me out the first time it happened! TMI?? Yup...if you're still reading there will be more of that!

With Mary the bleeding literally stopped in the hospital the minute she was born. The first...ah-hem..."movement" I had after she was born was totally and completely normal. I almost forgot what one of those looked like! I never experienced the other stuff again so I thought nothing of it (as did my doctors). Fast forward to my pregnancy with Robbie. It started happening again, but this time it took a few more weeks to show up. I was less freaked since it had happened before. My doctors tried all sorts of things thinking it must be internal hemorrhoids or something. Nothing ever "cleared it up". My OB decided it was just due to pressure on the bladder and what not and that as long as I'm not having problems due to it, we'll just monitor and see what happens after the baby was born.

I was expecting the same thing would happen and it would go away. But, 6 weeks after Robbie was born I went for my OB check up. It was still happening...with every movement. He decided to send me to a gastroenterologist for a consult. I went to that doc. They asked me a bunch of questions. Examined me and told me I had to get a colonoscopy to check things out. Ugh.

My colonoscopy was scheduled for November 1, 2006. For anyone who knows anything about colonoscopies, you know that you have to fast for the day before the procedure. And I had to do that on Halloween...with 2 kids (granted, 1 of them wasn't eating yet, but STILL)! But I digress....

I went to my colonoscopy and had one of the worst experiences of my life. The stuff they give you for the "twilight sleep" did nothing and I was awake, aware and crying through the entire procedure. Fun times.

After the procedure my doctor came to tell me that it "looks like I have Crohn's Disease". He said it with this somber look on his face, like he was diagnosing me with cancer or something. I had no idea what this meant and no idea why it was such a big deal. I'll come to learn - but it'll take me a while. He explained why it was Crohn's and not colitis (apparently it has to do with where the inflammation is and that there were healthy parts of the colon in between the inflamed parts - whatever - it meant nothing to me).

He gave me all sorts of medications and sent me on my way.

I recall that the inflammation cleared up relatively quickly once we figured out what it was and started treating it. I felt back to normal relatively quickly, which didn't help the cause of actually believing that I had some horrible life-long disease.

The medication I was prescribed was supposed to be taken 3 times per day. Yea...right. 1 time per day, easy...2 times per day...even doable. But 3 times per day...forgettaboutit! I took it diligently for a while. I felt better. Then, I'd miss a dose here...miss a dose there...and I would still feel fine. I started doubting that I had this horrible disease. I mean, how can I have this terrible disease, miss my medication, and still feel totally normal?? Little did I know....

In July 2007 we traveled to North Carolina for a family vacation. This is only important because I specifically remember that I forgot to take my medication for this ENTIRE week long trip. When we got back to town and I still felt totally fine after an entire week of no meds, I decided I didn't really need to take them anymore. Stupid? Ya think?? July 2007 stopped taking meds; June 2008 hospitalized for 4 days. Took a while, but consequences happened.

The flare that I experienced in 2008 was something I wasn't prepared for (obviously). It took me probably a month or so before I even realized what was wrong with me. At that point the only symptoms I had were during my pregnancies and those were not the symptoms I was experiencing this time. This time I was having severe stomach cramps and pain. The stuff in the bathroom wasn't necessarily pretty; but it wasn't red like it was all the time during my pregnancies. But, after a month of having an upset stomach; it dawned on me that perhaps this is something more than a stomach ache. I made an appointment with my doctor. He decided that since it had been 2 years since my first colonoscopy and given my symptoms, it was time for colonoscopy #2. And, enter another "worst" experience of my life. If I thought my first colonoscopy was bad, I didn't have a clue! There were issues with the doctor that I won't even get in to (talking to a nurse at the door while about to start my procedure). Then, the same thing with the drugs happened and again, I was awake and aware the entire time and in so much pain I couldn't control my crying. The results of the colonoscopy showed inflammation (duh!), so my doctor put me on steroids and sent me on my way. The difference between him and my first doctor was like night and day. First guy talked to me like he was giving me a death sentence and this guy talked so fast through the steroid stuff that my head was spinning...like it was no big deal.

I started on my lovely cocktail of medications and was hopeful that this would stop the pain. Would stop the midnight wake up calls from my stomach screaming at me. But it didn't. It continued to get worse. Now, I would have to lay down between doing things while getting ready for work because I couldn't stand for more than a few minutes. My mornings would go a little like this: wake up, sit on the toilet, think about showering, go to the bathroom again, get in the shower, dry myself off, go lay down because now I'm exhausted, get back to the bathroom, brush my hair, lay down, go to the bathroom....you get the idea. At some point in this routine I also had to get 2 kids ready to go to daycare and go to work. I would make it through my workday, but then repeat the routine at night. Eventually I called my doctor to ask him how long the steroids were supposed to take to kick in. He told me to pack a bag and go to the hospital. And there I sat. At the Cleveland Clinic Main Campus for 4 days. I had IV steroids going through my veins while they did other tests as well. The steroids worked wonders; but also did a number on my weight and my face.

But, after this hospital stay and finally being weened off the steroids, I was back to 100%. This time I was prescribed a medication I could take once a day. I took my medications diligently. But, for no reason (or so they say), and without warning....after nearly 4 years with no flare-ups whatsoever, my stomach starts to hurt in March this year. Again, it takes me a good 2 weeks to realize that these aren't just stomach aches that come and go. That they are probably Crohn's.

Even though I've now had this disease for 6 years, it's still new to me. In those 6 years I have only had 2 flares, so knowing when I'm having a flare is still a learning experience. I waited too long again before seeing my doctor this time. It was May before I saw him the first time. My colonoscopy this time didn't get scheduled until July. However, this time I got smart and asked to be totally put out for the procedure. I had to go to main campus, which was a pain, but I will do it every time! Made it a much more pleasant experience!

This time around I told my doctor I would really prefer not to be treated with steroids. He obliged and upped the dosage of my current meds and added another one. Of course increasing my dosage meant going from one time a day to 3 times a day again...and we all know how good I am with that. I have struggled all year with my Crohn's.

I'm writing this post today because today has been really bad. Today was bad enough that I even considered calling off sick to work. I have never yet called off work due to Crohn's. I've been struggling with my eating since the marathon and my Crohn's has been going crazy since that time as well. I think my body is telling me that it likes it significantly better when I'm not only eating healthy, but exercising. Another thing I've been struggling with since the marathon is working out. I've worked out once a week for the 2 weeks since the marathon. Not good. I think my body is in shock at the sudden change.

All the more reason why I need to realize that 2012 was a big year for me. I still managed to accomplish both of my big goals (Olympic triathlon & marathon) while dealing with Crohn's Disease in a way I haven't really had to deal with it yet. I managed to meet those goals in spite of this annoying disease. Now I need to shift my focus with getting back on track from wanting to do it for weight loss; to wanting to do it because the best I've felt all year was back in my first 2 weeks of re-joining weight watchers in August/September.

Ok. If anyone is still reading this; thanks. Sorry I went on for so long. 6 years is a long back-story. But now you know all about my Crohn's Disease.