Saturday, March 19, 2016

71 days... But Who's Counting

 This is how long this current UC flare has lasted... so far.

And I'm tired.


People don't realize what a toll an IBD flare can have on someone.
In fact, there's quite a bit that people don't realize about Crohn's / Colitis, unless they've had to endure it themselves.

So, in an effort to spread awareness and shed a little light on these diseases (and maybe garnish just a little sympathy)  :)  ...

How the Ulcerative Colitis journey looks for me (though everyone's journey looks a little different):

I have been dealing with this chronic disease since January, 2004. Twelve years.
Thankfully, the first 10 years, I had a good run of maintaining on drugs that kept it under control. Every couple of years, eventually each drug would run its course and no longer be effective, but then I was able to just change meds and each subsequent one would work. Yay!

Until Fall, 2013.

By this point, all that was left was the heavy-duty, costly biologics; Humira, Remicaid and the likes. 
I have not yet been sold on their effectiveness outweighing the risks and side effects, and even in the best case scenario, I'd still just be buying time until they lost their effectiveness as well.
So, that's when I decided to take treating my colon into my own hands and adhering to a very strict SCD / Paleo lifestyle.

And it's worked remarkably well.
For a time.

Unfortunately, it doesn't matter how diligent you are, you can still find yourself in a flare. It's just the nature of the beast.

I had a good run. Over a year, meds-free, with no flare.
Until January 8th of this year.

Even though I had my ups and downs with UC since my diagnosis 12 years ago, I never fully understood the battle until I had to continue fighting a flare on my own, where meds had failed.

I have been bleeding (from my colon) for the better part of 71 days.

I think, oftentimes, people liken IBD (Crohn's / Colitis) to IBS, and though they do deal with the same part of the body, they are entirely different beasts. IBD is not simply having an upset stomach, as most people are familiar with. IBD is like having one or more volcanoes in your gut that erupt unpredictably and unmercifully, and during a flare - quite consistently. And with each eruption, your gut cramps up and instead of molten lava... blood.

And, this may be a little TMI, but in the spirit of full-disclosure and awareness ~ Just like a volcano builds up pressure, so these fissures build up air, which results in great urgency.

I never fully understood this before. When I was first diagnosed and read online about people lobbying for potty passes and talking about having an extra set of clothes with them, I thought they were just being dramatic. Now I know for myself. All too well.

The struggle is real. And relentless. There have been times when the bathroom door at work, which closes hydraulically, just about took 2 seconds too long to close before I could lock it behind me.

And during a flare, you can have these 'eruptions' up to 20 times or more a day.

This much blood loss often leads to anemia in IBD patients. 
Thankfully, this time around, I decided to supplement with iron, which has helped me tremendously, just to be able to function and not fall out during the day.

However, people tend to forget or just don't realize, that just because you look okay, doesn't necessarily mean that you feel okay.

The iron may be helping me pull myself out of bed in the morning, but I am still incredibly wiped out. One trip up my flight of stairs at home makes me feel like I've done an entire leg workout. I had several heavy bags of groceries one night and dropped my keys on the ground and I just looked down at them, wanting to cry. It took all I had to bend down with the groceries, pick up my keys and actually stand back up, with everything in hand. I may as well have been asked to take 12 steps in a Navy Master Diver uniform alongside Cuba Gooding, Jr. 

IBD flares don't only affect your gut. 

Due to my colon not functioning properly, my body is not absorbing the nutrients it normally would, that I need. I supplement with vitamins, but am still extemely depleted.
I have had countless foot cramps in the last couple of months. Undoubtedly, due to my lack of magnesium and potassium. And I feel certain that I'd have more energy if I retained more Vitamin B. 

Sleep deprivation is very common when in a flare. And not for a lack of being tired.

I had a couple nights this week, where I hardly got any sleep at all.
Wednesday night, the eruptions had me up every hour, on the hour. Nine times in nine hours.
Thursday night, I was a bit luckier; only up every couple of hours.
Let's just say, I live for the weekends at this point, to where I can just rest. And sleep, if needed.

And in the midst of all of this... I still have to cook. Daily.

The absolute last thing I want to do, after dragging through another day at work, is grocery shop. And cook. And clean dishes. And empty / load the dishwasher. Ugh. Let alone preparing and eating the same 5 foods that I have consumed for the past 70 days.
I would love some good comfort food. I still have an appetite. And all the same foods still look and smell and sound good. I just can't have them. Instead, I get to cook / eat one of 5 things. Again. Hamburger, Chicken, Zucchini, Sweet Potato or Bacon & Eggs. Ugh. What I wouldn't give for a Chick-fil-A chicken biscuit or a pound cake.

All of this to say... Please, if you know someone with Crohn's or Colitis, be merciful. 

Try not to judge their car that's long overdue for a washing. Or their floors that are long overdue for vacuuming. 
Try not to take it personally if they're cranky or moody. If their looks could kill or if they cry at the drop of a hat.
Try to refrain from phrases like "What's wrong with you? - Oh, you're still dealing with that?" or "What do you mean, you can't go _______ ?" "Do you have to be so strict on your diet? Can't you just splurge every now and again?" and my favorites "I didn't get the donut I wanted" and "What - donuts aren't on your diet?" (What the heck kinda diet do you know of that allows donuts?!) I swear, by the gods, if I had more energy, I would lay some people out for some of the stuff they say.

But, that's just the UC talking.



  1. Oh, Jess. I'm so sorry nothing seems to helping you get past this. You didn't mention whether you've considered talking with your doc about this. I've no idea whether there is anything he/she could offer to stop the flare without involving the biologics. As you know, I can certainly relate to some of the things you're going through, but as you said, our paths have been different. I've had two surgeries and have been fortunate that my Crohn's is still pretty much controlled with Delzicol. I've not tried the Paleo, but understand the stress of having to cook every day whether you want to or not. My thoughts and prayers are with you and I'm so hoping that one day very soon, I'll see a post letting us know that the flare is over. (Knowing our disease as we do, we know that "over" is a temporary thing, but hopefully, you'll have a long time flare-free!) Love you!

  2. Thanks, Lyn.
    He did try me on a new steroid this last time: Uceris. It did nothing for me. Nor does Prednisone at this point. All he's got left in his arsenal is biologics. But, I go back to him this Tuesday.

  3. I'm sorry you have to go through this and I have no answers for you .I am glad you wrote about this to make us aware of what you are going through and others like you. Looking at someone you can not assume they are ok. I will think about you and hopefully one day there will be help for you . I do believe you are the sweetest young lady I know.