How Life HITS You Harder When You Have IBD

Since my J-Pouch surgery and my fresh start, I think I give off this perception that everything is “normal” and I have this little happy, healthy life. And for the most part that is true. I don’t feel sick anymore. But there are those days, those days that life just hits you and I can’t help but feel that because of IBD, they hit us a little harder.

I don’t think people yet recognize that those small challenges EVERYONE faces, they seem to be a little bit more difficult for someone with a chronic illness to overcome, especially when your bowel is damaged. I think a lot of IBDers can relate to this but I thought I’d bring a bit of awareness to how our illness continues past a flare up. Don’t confuse this post as a cry for sympathy. Just an explanation that when I say I’m “tired” I don’t mean, “I stayed up too late watching Netflix.”

Life Hits You Harder When You Have….

  • A Cold/ Flu: When you have an autoimmune disease, your body’s defensive mechanism is already out of whack. And since the majority of your immune system lives in your gut (which I have had removed, or for people with IBD, is sick), one can understand how our bodies are a little bit more susceptible to the common cold and flu. I usually do my due diligence by taking my multis and Vitamin C’s, but keep in mind I also work with children (little germ invested munchkins). So I’ve realized I pick up those minor infections and viruses fairly easily. When I do get sick, it seems to really knock me off my feet, and it takes me longer to recover. This could be because I’m not absorbing those Tylenol Cold & Flu pills very well. It also could be because on the very basic level, when you’re sick you need rest and fluids, both of which are difficult for me to get enough of. And if it’s a stomach flu, when ANYONE feels dehydrated, I can assure you I feel that. The last time I had the flu, which was going around at work (shocking) I actually took myself to the emergency room just so I could get an IV.
  • A Hangover: Speaking of dehydration. When anyone drinks alcohol, your body is depleted of electrolytes and fluid. That’s why we feel like crap waking up with a hangover because we’re dehydrated, and the first thing we reach for is the Gatorade. Your large intestine is responsible for water absorption and feeding it back into your body. When you don’t have a colon, or it’s not working properly, you’re not retaining water and are likely getting dehydrated 30% faster (that number was given to me from my GI). As you can imagine when I drink, even the slightest bit of alcohol, my hangovers are SOOO much worse. I’ll have a couple of glasses of wine and it knocks me out for 2 days. I try and keep up by drinking just as much water and limiting myself….but it’s summer, I love wine and I have no self control.
     

  • A rough night’s sleep: I generally get up 1-2 times per night to go to the bathroom, and that’s after taking my Lomotil. But if I eat something upsetting, or it’s too hot, or I’m anxious and I’m having a hard time sleeping anyways, I wake up unrested and absolutely exhausted. I need to be able to sleep in between those bathroom breaks and when my sleep is disrupted even further man does it effect me. I struggle with my energy levels to begin with, partially because of that dehydration aspect and also because of the nutritional absorption, so if I don’t get enough sleep I really really struggle throughout the day. And for people who are in a flare up, it’s likely they’re anemic, feeling ill, up more that 2 times for sure, and are dropping weight like crazy so you can imagine how difficult it is to function.

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  • A Period: (This may be TMI but I’m going to cover this anyways) During a flare up, you’re having diarrhea likely 10+ times a day. And what people don’t usually understand is that it’s not your regular diarrhea. It’s blood. I was literally just pissing blood out of my ass 10+ times a day, which obviously lead to serious anemia. This affects energy levels, heart rates, skin colour, and overall health since you literally don’t have enough blood in your body. So imagine every 28 days when you lose even more. When I was sick sick, my periods absolutely drained me. I think I was napping about 2 times a day, and it eventually got to the point where my body said, “Nope. You can’t have a period anymore,” and they stopped all together.Now that my surgeries are over you’d think my periods would be all normal again. Which for the most part they are. Except again, I struggle with those energy levels and for 4-6 days a month I REALLY struggle. Also, (again TMI) with a J-Pouch I find myself straining sometimes. In turn, I’m actually changing my products more frequently. Just annoying right? And expensive.
  • A Bad Day: You know those days where you sleep through your alarm, or you get a flat tire, your coworkers are annoying, you fight with your mom or you burn your toast? They happen to us all. But for some reason, us IBDers just FEEL it harder. I carry the extra baggage of trauma and a heavy heart to begin with and then those days hit and I’m like “Really universe?! After everything I’ve been through you couldn’t just let me sip my coffee without spilling it on my white pants?!” I’m just more emotional and sensitive I guess and when the coffee spills I well up in tears and it feels like another mountain to climb.

I’ve connected with so many people with IBD and I always hear how strong we are and how we can overcome anything if we can deal with Crohn’s or colitis. But I actually think it’s the opposite. It’s softened me. It’s made me vulnerable and susceptible. It’s not a bad thing by any means but like I said, things just hit me harder.

I realize this post sounds like a pitty party but it’s not. It’s very simply because I KNOW there are readers who this will resonate with. And on the other side of this, those incredible moments and extraordinary days ALSO hit harder. Those days of sunshine and laughter, warm drinks, cozy evenings, a good book, a hard workout, a new purchase, a drive with the windows down, an upbeat song, a fresh meal, or an accomplished work day. A new apartment, a new puppy or a new vacation. THOSE days hit hard too. Those are the days that are unforgettable because we’re well enough to enjoy them. We savor them and appreciate them. Our baggage is still heavy but in those moments, we’re strong enough to carry it.

 

 

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