Bitter Party of 1: Remission News Felt Like a Big Fat Lie

Bitter Party of 1: Remission News Felt Like a Big Fat Lie

Earlier this year, in order to avoid a colonoscopy, I participated in a non-invasive test that would provide real-time pictures of my insides. The results provided good news. Yet, it didn’t feel that way.

I don’t do well with colonoscopies or, for that matter, the prep that accompanies them. I’m also well overdue for one. These scopes are so important for Inflammatory Bowel Disease patients, regardless of whether you have Crohn’s disease or ulcerative colitis. The biopsies provide critical insight (pun intended) on the health of your intestines.

Biopsies mean the world to me. After my first colonoscopy, a biopsy was taken of what appeared to be healthy tissue on the surface. Deep below it was another story entirely. This is one of the reasons why scopes and their biopsies are relevant to my current treatment plan.

But oh how they mess me up.

It’s Like Swallowing a Little Robot

There’s another type of endoscopy that isn’t as invasive. It’s called capsule endoscopy (aka a Pill Cam). However, it doesn’t provide biopsies.

What’s cool about the Pill Cam is it’s not much bigger than taking two large vitamins together at the same time. Inside the capsule is a camera that beams pictures to a receiver pack you have strapped to your body. It’s like swallowing a little robot that takes pictures of your insides.

For those unfamiliar: I mentioned prep being an issue for my body. Some doctors do require a half prep to be used prior to swallowing the Pill Cam. But each doctor has their own preference.

My Brain Wouldn’t Shut Up

The results were ready at my next appointment. To put things in perspective, this flare began in 2012 and rendered me disabled. Since starting my new treatment in 2016, I’ve made leaps and bounds in my Crohn’s recovery. However, I still experience Crohn’s symptoms like searing pain, hypermotility, extreme fatigue, and nausea. I also live with Psoriasis, as well as arthritis located in the jaw, hands, and feet. The Psoriasis has improved very much, and arthritis fades in and out, but none of the conditions have completely cut me a break.

Questions for my doctor about the symptoms I was still experiencing raced through my head. Technically, I already knew the answers. But my brain wouldn’t shut up.

The truth is, even if you are in remission, your IBD (ulcerative colitis or Crohn’s disease) is not cured and you can remain symptomatic. I’ve heard it time and time again at medical conferences, but it’s different when you live it.

Next Up, Bitter Party of 1!

Once my doctor concluded her regular list of questions, she asked if I had any. Usually, I have a list. I didn’t this time. I only wanted to know one thing. But suddenly I became shy. Who am I?!

“Uh, do you have the results of the Pill Cam?” I sheepishly asked.

“Yeah, you’re in remission,” she replied nonchalantly while tapping out notes.

I asked her if she was sure. She laughed and said, “Yes. The pictures looked good. You still need a scope but we can hold off if you’d like.”

This news did not feel great. What exactly have I been chasing down these last six years? I was at a loss for words, but managed to sputter out, “But, the joint pain and inflammation? The Psoriasis? What about the days I live in the bathroom or when it hurts to eat? Why do my labs suck?!”

She relayed the arthritis symptoms err closer to Psoriatic arthritis, which made sense. My skin may go through clearing and patches. The labs, skin, arthritis and GI symptoms are the culmination of having more than one inflammatory disease, and additional meds are probably needed.

And the zinger I already knew but didn’t want to admit, remission for Crohn’s doesn’t guarantee being symptom-free. So unfair!

Not going to lie, I walked out of the appointment feeling salty. Why though?

Take the Win

After some soul searching, here it is, I’ve been chasing this intangible thing — REMISSION —for not just the last six years, but since I was a teen. Remission was the Holy Grail… the end game… my Olympic Gold. And it felt nothing like I had thought it would.

At my next appointment, I asked my doctor, “You said I was in remission, right?” She nodded. “What is my remission?”

My remission currently is visually confirmed. The images were pretty good in comparison to past imaging she received from my local GI. But, we still need pathology. So, for now, I’ll take the win with a grain of salt.

Have you been told you’re in remission and felt like remission was a lie?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • Connie9
    2 months ago

    I was also recently told that I was in remission thanks to my current course of biologic therapy. While I was deeply relieved that my insides no longer resembled a cobbled up piece of bleeding meat….I was damn angry. Angry because I too thought remission would feel, well…. ‘better’ than it does. Arthritis? Still swelling up in the major joints. Fatigue? Ever present. Abscesses? Yup, I’m an excellent encapsulator of pus. Rashes? Small victory, it’s only on my torso and legs today. I felt an immediate wave of relief, a HUGE surge of hot anger welling, and topped off with a profound sense of guilt. I mean, how could I feel that way or even have those thoughts? I had to tell myself that it was OK and that I was ALLOWED to really feel how I felt. I’m still struggling to process it. Coming to grips with the fact that my entire day to day existence continues to be ruled by how I feel, even when I’m in a clinically good place, is still somewhat disheartening. Whoever said ‘what doesn’t kill us makes us stronger’ sure didn’t have IBD (or they were a genuinely HUGE masochist, LOL!)

    I also have had some well meaning people in my life who’ve equated my remission to a cure….for just about anything and everything! One thing remission has taught me- it’s equally as exhausting trying to defend how you feel and/or explain yourself as it was before, in the throes of a flare. I’ve been really proactive as of late, sending those same people closest to me the links to articles and editorials (just like I’ll do with this one!) so they can gain knowledge and perspective about IBD that isn’t coming directly from me. Less stress, lots of info, *NO* I’m NOT ALONE, *NO* it isn’t all in my head!! Ladies and gents, that is what I call a win-win!!

    Hopefully we can make more people understand the disease, the frustrations, and all that comes with it…..in/outside of remission.

  • Jaime Weinstein moderator author
    2 months ago

    Connie9, thank you for sharing your feelings! I cannot agree with your more on all of your feelings.

    It’s such a fine and delicate win to not have “danger” labeled on your intestines, but why haven’t our bodies gotten that memo?!

    Thank you for considering sharing this piece with people you know. Remission while tied to a small win, is just another R-word to me at this point.

    Wishing you a happy and stress-free Thanksgiving — Holland, InflammatoryBowelDisease.com Team Member

  • thedancingcrohnie moderator
    2 months ago

    @connie9 you definitely have the right attitude. I think the best way to deal with it is to educate those around you. Sadly, family and close friends seem to not take your word for it, at least that has been my experience. It is empowering to be able to support how you feel with actual articles and experiences from others to show that, yes you aren’t alone. And yes, it is not all in your head! Keep pressing on, warrior. I’m wishing you the best in health.

    Always dancing,
    Elizabeth (team member)

  • MJ210
    2 months ago

    Totally understand the let down or better yet the confusion of hearing you’re in remission. It’s like your Dr, family and friends all think she’s better no Crohn’s. So how can I complain when I just don’t feel well, when food bothers me, my side hurts, I’m running to the bathroom all day and night???? After all I’m good, I’m in remission. I’ve never been told I can still have symptoms even though my colonoscopy doesn’t show signs of Crohn’s. Rather, I’ve been told it must be my IBS instead, because I can have that. Or it’s my gastric reflux, that’s possible too. Or it’s my arthritis or breakout of eczema. You’re so right, one inflammatory disease just seems to lend itself to others but hey I’m good, my Crohn’s is in remission.

  • Jaime Weinstein moderator author
    2 months ago

    MJ210, it’s so annoying! LOL

    And yes, at times it totally is my IBS. My nausea isn’t necessarily Crohn’s all the time, it can bethe reflux. But Oh Em Geee — “Why can’t my body get the memo, Doc said remission, so it’s supposed to behave!?”

    If only things were that easy, right? — Holland, InflammatoryBowelDisease.com Team Member

  • thedancingcrohnie moderator
    2 months ago

    @mj210 I can so relate to this frustration! You are absolutely not alone in feeling this way and I hope you can soon find relief. Definitely keep advocating for yourself. If you aren’t feeling well, continue pressing your doctor and ask for tests. There may be other extra-intestinal manifestations occurring. Press on, warrior!

    Always dancing,
    Elizabeth (team member)

  • thedancingcrohnie moderator
    3 months ago

    I have never been told I am in remission. I was diagnosed with CD in 2011 and it has been a goal of mine to hear those words. I am feeling the best I’ve ever felt as I have incorporated holistic approaches this time around and I am eager to see where I am at. Soon I will get a colonoscopy and I would love to hear the work “remission.”

    However, after reading about so many other’s experiences, it seems like the consensus is that remission, in some cases, doesn’t mean much. Your insides may look good in the colonoscopy, but a patient may still be feeling awful and dealing with symptoms. I feel like, when someone hears the word remission, they want to be free of symptoms, but apparently that’s not really the case.

    Always dancing,
    Elizabeth (team member)

  • Jaime Weinstein moderator author
    2 months ago

    Elizabeth, I think the long-term goal is Deep Remission (symptom and clinical remission).

    While I’m not greedy and will take what I can get, clinical (good scope and good pathology) is the first step.

    Unfortunately, controlling the overall inflammation in my situation is a continual issue as holistic approaches only made my situation direr, and I am allergic and/or sensitive to many meds.

    As for your next scope, yes getting a great visual and pathological (biopsy) confirmation is a great step in your IBD journey.

    I wish this was communicated with more patients. We run around like mad searching for how to get into this R-place, but when we get there it may not be all that and a bag of chips because we’ve falsely set it upon a very tall pedestal. — Holland, InflammatoryBowelDisease.com Team Member

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