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Oct 02, 09:10 AM

Remembering how to be sick

By Jackie Zimmerman

Gali App

Don’t let an unexpected IBD flare catch you off guard.

The woosh of hospital smell hit me pretty hard as I walked into the ER, and just like that, it was like I never left. The one-two punch of scents and sounds took me right back to my last hospital stay…and the one before that, and the one before that, and so on. But even though I used to be a pro at ERs and getting admitted, I realized quickly that I was a little rusty on the “being sick” subject. I hadn’t been in the hospital or ER for 6 years. I haven’t had a colitis flare in 9 years. I was out of practice. I had actually forgotten how to be sick.

As it turns out, the excruciating pain I woke up to at 2 a.m. was a bowel obstruction. The first bowel obstruction I have ever had in my journey with inflammatory bowel disease. I know that makes me very lucky, but it also made it very unexpected. How do you forget about the possibility of something like this?

I forgot that the “chronic” in chronic illness is there for a reason even if you’ve been well for years. I forgot that “chronic” doesn’t necessarily mean “all the time,” but could just mean “here and there, but most definitely still here in some capacity.” Somehow it didn’t make sense that ulcerative colitis, my chronic illness, could actually still be a problem after all this time, as bananas as that sounds.

When you’ve achieved a state of remission, it’s easy to forget sickness and everything that goes along with it. In a weird way, it’s almost like being diagnosed all over again, there’s so much to (re)learn. Here’s a list of things that I had to learn again after being healthy for so long.

Always be prepared

I used to always have a “go-bag” ready, either with a full change of clothes for when I was in a flare or for anything I’d need at the hospital. Having been in remission for so long, I stopped packing those and found myself struggling to throw one back together quickly. Here’s what I came up with.

My IBD go-bag:

  • A full change of clothes
  • Wet wipes
  • Plastic bags
  • Toilet paper

My hospital go-bag:

  • Laptop
  • Books
  • Headphones
  • Real underwear
  • Pajama pants
  • Sports bras
  • Plastic bags
  • My pillow and blankets
  • Phone/laptop chargers
  • Toothbrush and other toiletries
  • Wet wipes
  • Dry shampoo
  • Medications taken daily

Being prepared goes for office visits, too. I used to have a binder I took with me everywhere that had all the info that any doctor could possibly ask and I’ve decided it’s time to have one of those ready to go again. I’ll have to remember to update it over time, something that used to happen naturally as my care was constantly changing.

Medical History Binder:

  • List of all of my medications
  • Names/phone numbers of all of my doctors
  • Copies of my written medical history, so I can hand it off when needed

Ask for help

There are all these things you need help with when you’re sick that you totally take for granted when you’re well. Things like grocery shopping, cooking your own meals, walking your dogs or doing your own laundry. I used to really pride myself on being independent, and when I got sick, I couldn’t wrap my mind around no longer being self-sufficient. I eventually learned that it’s ok to ask for help because there are lots of people who are eager to support me and are happy to help where they can. Help is something I resented in the past and I wish I had learned to accept earlier. Remember it’s ok to ask for help.

Asking for help this time around was a lot different for me. Not only was I willing to actually ask, but I had an amazing supportive partner who was eager to help. Last time I was sick I didn’t have a husband. I didn’t even know him at that point in my life. Having a great partner to help and rely on during this was all new to me. Not only did he visit me and bring me things, but he also acted as my communication hub. He was the head of my phone tree and that alone was so helpful. I didn’t have to call everyone I knew or keep my family informed, I now had someone to do it for me.

Be your own advocate

One of the biggest things I forgot how to do was how to be my own advocate. I forgot how little doctors tell you when you’re admitted and how infrequently they interact with you. It seems like they just assume that you won’t understand what’s happening. When you’re admitted or entering a new flare, work to quickly establish yourself as an educated patient, ask for test results, for the reasoning behind medications or tests ordered and don’t be afraid to push back when it doesn’t feel right. I made sure my doctors and nurses knew that I was well aware of the protocol for my situation and that I expected to be kept informed of what was happening. I remembered to be proactive with my questions and requests, making sure they’d get answered before a shift change or before the doctor’s office had closed. Simply remembering to be proactive and to manage the hours in the day that you have access to care is a skill I forgot I had. It all comes back quickly, like riding a bike again after years and years, but it’s not nearly as fun as a bike ride.

There’s no shame in IBD

A harder one to remember was that there’s no shame in IBD. When you’ve got UC or Crohn’s it’s so important to remember that if you’re having a rough flare or you’re hospitalized, the goal is to get better, so whatever happens along the way is part of the process. During this last hospital stay I kept having accidents at night, something that never happens at home, and I didn’t know why. The first time it happened I dreaded asking the nurse for help, but she was so kind and it reminded me that most nurses have extreme empathy and that they really have seen it all. I was so grateful that she always came to my aid quickly and never made me feel anything other than deserving of help. It’s hard to get back to that very humble place where accidents and extreme vulnerability are something you take in stride. But unlike newly diagnosed patients, I remembered those times where I had let go of my pride and focus on getting well. Forget your work email and the to do list sitting at home, it will be there when you get back.

Be ok with uncertainty

Living with UC taught me to take things in stride and to be as flexible as possible, but even the most chill person can have a hard time with uncertainty. I had to remember that hospital stays and IBD flares are nothing but a constant barrage of things that I have no control over. There are no clear answers for when your flare will end or when you’ll be discharged. So much of IBD is a waiting game, and the sooner that I accepted that all of this was out of my control, the more relaxed I felt.

The silver lining to being “sick again” is that you know you can get “well again.” Flaring after a long time can feel like a massive setback, and it could be, but it doesn’t mean you’ll never recover. In 2009, I was working my second job out of college, and my world crumbled around me when I got sick. I lost my job. I was going into debt. I didn’t feel like I would ever get better. I had lost all hope of a “normal” life and whatever that meant. I live a life today that I never dreamed would be possible; I’m self-employed and work from home, I’m not in medical debt and I’m married to the raddest dude ever. We can’t see the future, so we have to focus on what is in front of us, and when you’re sick again, your focus needs to be on the steps it takes to get better.

We are resilient

After four days, I was discharged from the hospital and tried to wrap my brain around what happened. It wasn’t the blockage that I struggled with, but rather this idea of “Am I sick again?”

But I wasn’t “sick again”— I had always been sick and had just been lucky for a long time. So did this mean I wasn’t lucky anymore? Or that I was going to get really sick again? Did this one blockage mean I was about to relive the worst period of my life? It’s easy to let your thoughts spiral out of control about all the things that could happen once you have an unexpected flare again. But remember: you’ve done this before. You can do it again. You achieved remission so successfully that being sick was a blurry memory. You will get there again, but this time it will be easier because you know it’s possible.

My recovery from the blockage was the easy part. What was harder to accept is that I was and am a chronic illness patient, something I had the luxury of forgetting. Somehow the pain and trauma that consumed years of my life had stopped dictating how I lived and how amazing is that? Being chronically ill is not amazing, but it’s incredible knowing that despite all the heartache and uncertainty that can exist in our lives, we still have the ability to focus so fiercely on the good that our sick days aren’t even in the rear view mirror anymore. I hope that I have the opportunity to forget it all again in the future.

For more information and tips on living with inflammatory bowel disease from the medical and patient communities, download the Gali friend for IBD mobile app and she will create a personalized feed of articles just for you!

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