Ulcerative Colitis - The Crappiest Disease Ever

This is what $3,600 of meds look like

The words that gave me hope my life will return back to normal came in an email.  It said:

"In the big picture, I think the right thing to do now is move forward aggressively with therapy. I will order Remicade for you today and a referral to the infusion suite for this medicine to start as soon as possible."

I read that line about five times.  Then I burst into tears because I'm a bit crazy.  After 6 months in varying levels of misery I'm finally getting a treatment that, while really aggressive, has a really great chance of giving people like me a shot at normalcy.  

I have moderate-to-severe Ulcerative Colitis.  It really sucks.

For those who're lucky enough to not know what Ulcerative Colitis is, I'll leave you a link to a Web MD description of it and spare the gory details.  At its core, it's an auto-immune disease where your immune system mistakes normal digestive bacteria, foods, and even liquids in your large intestine as a harmful bacteria, foreign invader, or illness.  Your body sends white blood cells to the intestines, causing inflammation, ulcers, bleeding, severe pain, anemia...  And yes, it's every bit as fun as it sounds like it would be. 

Running a half marathon days after first
symptoms appear

Nobody knows what causes UC, though family history does play a part.  However, nobody in my family has UC or any form of IBD.  Personally, and my doctor didn't disagree, I firmly believe that this is a co-infection brought on by my Chronic Lyme Disease.   I've found through the power of the internet that there's an unusually high rate of diagnosis of IBD in those with Chronic Lyme.  

Ah, Lyme, the gift that keeps on giving.  

You'd think something as spectacular as UC would come on slowly and gradually, but nope.  I quite literally went to bed one day in November perfectly fine, then woke up the next day perfectly not.  And because my body has a marvelous sense of timing, I developed my symptoms just days before Run Disney's Wine and Dine Half Marathon.  

Yes, I ran a half marathon (in the pouring rain and cold I might add) with active UC symptoms, and I got a mega PR.  I'm only mentioning it because that would be my last major victory in awhile.

Symptoms continued from December through January and while irritating, they were generally manageable.  I thought my symptoms were everything from too much fiber from the diet I was using in training for my race to a food allergy to even the flu.  While my husband and family knew what my issues are, I suspect most of my friends suspected I either had a drug habit or an eating disorder with as often as I was vanishing from dinner tables.

At the end of January, start of February, things really took a turn for the not awesome.  My symptoms got worse, could no longer be managed with over-the-counter drugs, and the pain was becoming ridiculous.  All just in time for Run Disney's Glass Slipper Challenge/Enchanted 10k/Princess Half Marathon.  Remember those race recaps I wrote awhile back where I talked about my mystery illness?  Now you all are in the know.  Didn't I say my body has an excellent sense of timing?

It was less than two days after getting home from those races that I ended up in the ER with severe abdominal pain.  And when I say severe, I mean the worst pain I've ever felt.  Worse than labor.  Worse than when I broke my tailbone.  Worse than when I watched all of "The Real Housewives of Miami" in a week.  It was terrible. 

Fun at the ED, brought to you by pain meds

You'd think that's where the road to recovery starts, but nope.  Several hours later I was discharged with a prescription for medication to prevent nausea, a diagnosis of "severe menstrual pain," told to avoid gluten, and was given a note to call my doctor in a few days.  I felt like an absolute idiot.  A weird combination of being totally ignored, hypochondriacal, and just really confused about what was happening.  Oh, and I was still in miserable, can't stand up, drenched in sweat, pain.  Know that nasty scene in "Alien" when the thing bursts out of the guys stomach?  I was convinced that was what I was dealing with.  There was no way anything that hurt that badly could be anything other than an alien clawing it's way out of my gut.

I called my doctor in tears the next morning, explained what the situation was, and finally got my GI consult.  Two weeks later was my diagnosis, the start of my treatment plan, and multiple procedures to try and help get symptoms under control.  I was given medications that cost over $3,600 without insurance ($250 with it, thank goodness) and came in big, brown bags that looked like Chinese takeout.  Every four hours, there was some sort of medication I had to take, and this was the non-aggressive treatment plan.

How demeaning is this ED discharge note?

What's more fun than all that money spent, the side effects (Prednisone, I hate you), sticking to the BRATT diet, living off Teavana and rice, and basically not going out in public because you're either worried about your illness or you're worried about the side effects from the meds?

Having the meds suddenly stop working.

With the finish line on my Prednisone taper in sight, with my side effects just starting to resolve themselves, and after starting to not fear eating, travelling, or being in public, all of my symptoms came back and they were worse than ever.  I woke up in the middle of the night, soaked in sweat, with a sharp pain that was so strong that I actually and honestly thought that somebody had broken into our house and had stabbed me.  I thought I was dying.  

I waited two days before contacting my doctor, thinking I was just having a bad

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day.  On day three, I'd had enough, emailed my doctor and explained what was going on and said if I had to go back on the Prednisone, I was going to cry.  

He listened.  He told me I wasn't crazy.  He said this was severe, but normal.  He said I could do the Remicade, discontinue the Prednisone, and we were going to get this solved.  

Do you know how wonderful it is to hear that?

So here I am, on the brink of my first Remicade treatment and I am hype.  Is it a stronger route than I wanted to take to deal with my UC?  Sure, but when your illness won't respond to anything else, you have to do something.  At this point, I've tried diet changes, different medications, passive therapy, and none of it has really worked.  So I guess the next step is aggressive therapy and I have high hopes I'll finally get some relief.

Ulcerative Colitis is an illness that carries with it a lot of symptoms, risks, and complications, all of them really kind of embarrassing.  When I was first diagnosed, I felt really alone, like this condition was some big secret I had to keep.  I mean, it's not exactly something you can bring up and discuss at the dinner table, is it?  It's a really isolating thing to deal with and I was really struggling to keep what I felt was a big secret.  I'll go ahead and say it...  I was ashamed.

Just before a procedure, a little
worse for wear

However, thanks to the power of the internet, people who struggle to live an active lifestyle with this disease and are willing to share their journey (helping people like me along the way), and numerous doctors who keep reinforcing that this is totally out of my control and not something that I need to hide, I'm realizing here's nothing to be ashamed of.  In fact, I've found that life has become a whole lot easier now that I feel comfortable owning the fact that yes, Ulcerative Colitis is something I deal with.  Ulcerative Colitis is the reason I nap in the middle of the day, have crazy food restrictions, and sometimes don't show up to important events in the last minute.  It makes exercise that was a basic warm up for me this time last year a full on, fall-over, want to flop-on-the-floor workout.  Am I giving a blow by blow account of what's going on with me to everybody with ears? Aw heck no...  But I am more comfortable explaining hey, I have UC, this is why I can't go out, this is why I order plain chicken and rice at restaurants, and this is why you can't tease me for watching awful TV.  

Ulcerative Colitis is a fact of my life and I hope really soon I can say that successfully managing my Ulcerative Colitis is my reality too.

Let's discuss:

• Do you or a loved one have Ulcerative Colitis or other Inflammatory Bowel Disease?
• Does dairy make you cry too?
• Ever have a bad ER experience that made you want to cry?
• Ever hear that your monthly medications cost more than a vacation and actually cry?