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feet on fire

Weird, not-so-talked-about Crohn’s Symptoms

Crohn’s disease, as those of us know all too well, doesn’t just affect the digestive system. Because the digestive system is the mecca for health in our bodies, when it suffers, everything else suffers. In turn, our bodies can react in the strangest ways and produce weird symptoms that our doctors tend to forget to tell us about.

I was diagnosed with Crohn’s in 2011, so I have some years under my belt dealing with strange symptoms. One thing for sure is that I wish my doctor would have warned me against the weird ones so that I wouldn’t think the symptom had nothing to do with my Crohn’s when in actuality it had everything to do with it.

A list of some of the not-so-talked-about symptoms of Crohn’s disease:

1. Scabby/bleeding nose

When I was living in New York City, and experiencing weird scabbing in my nose, I thought it was just because of the cold weather. However, I never really had scabs in my nose ever so it was weird to experience. At the time when I got this symptom, I was on Remicade, and I thought it was a side effect from the drug. Well, it wasn’t until I switched medication and experienced the scabs again that I realized it was from my Crohn’s flaring.

That’s right, if you ever get scabs in your nose that make it feel like there is cement up your nostrils, you aren’t the only one. And yes, it’s your Crohn’s acting up. I get this symptom when I am in a bad flare and it only goes away when I get the inflammation under control.

2. Burning feet

I thought I was just really hot one night when I experience what felt like burning feet. Typically I run cold and I even used to be that girl that slept in socks, especially in winter. My whole life I’ve ran cold, so when I started to feel this symptom I thought it was the weirdest thing! It went through my head that maybe I was just growing out of being cold all the time and now I can be the girl that sleeps sockless.

No, it was the Crohn’s. So if you feel like the bottoms of your feet are on fire to the point that you can’t have them touch each other because of the heat, no you’re not crazy. You are flaring and it will go away once you get your flare under wraps.

3. Hives

I never had skin issues growing up and I don’t have sensitive skin. So when I broke in hives, I thought to myself well I must be having an allergic reaction to something. Or perhaps my lotion or soap is no good for me anymore. It was so weird breaking into hives because that never happened to me before and the last thing I thought about was it being the Crohn’s.

Well, just as you guessed, it was indeed my Crohn’s. I’ve broken out into hives badly on my back and right arm twice since my diagnosis and both times I was enduring a severe flare. So again, if you have experienced this, chances are it’s your Crohn’s.

4. Eye inflammation

Looking back, this one may have been one of the most frustrating. I wish my doctor would have explained to me, that eye inflammation is a symptom of Crohn’s disease. When I experienced this symptom, the onset happened overnight. I went to bed with a normal right eye, and I woke up to a swollen, red, right eye. It was so bad that I immediately thought I had a bad case of pink eye and called into work sick.

No, it was definitely not the pink eye, not even close. Again, I was flaring and it was an onset of Crohn’s that decided to inflame my poor right eye overnight. Just as you guessed it, it wasn’t until I was able to get the inflammation under control with Prednisone, that the inflammation went away.

How about you? Have you experienced any of these less talked about symptoms? If so share below, or even share some that aren’t listed.

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

  • Matt Nagin moderator
    1 day ago

    Hi Elizabeth,

    I’ve never experienced the bleeding/scabby nose on Remicade, but I’ve had a host of other weird symptoms. Something I have trouble with is determining if I am getting sick (stomach bug/food poisoning) or a possible Crohn’s flare. I’ve encountered this in foreign countries and it is frustrating to deal with.

  • thedancingcrohnie moderator author
    4 hours ago

    Tell me about it! Anytime I don’t feel myself, it is always that game of is this Crohn’s or is this the common cold or stomach bug? Oh the dilemma!

    Always dancing,
    Elizabeth (team member)

  • Sahara Fleetwood-Beresford
    5 days ago

    I have been guilty of both associating symptoms with IBD when they weren’t related, AND thinking it was a different, stand-alone issue when it was a symptom!
    Interesting to read about the scabs up your nose! I have had this on and off for years. I never saw a GP about it because it didn’t seem like much of an issue, especially in comparison to the bigger stuff… But, I’ve had them last months on end, and it can be pretty sore!
    I think I had actually linked it to the damp in my house in the back of my mind!

    – Sahara (team member)

  • thedancingcrohnie moderator author
    4 hours ago

    Oh yes, I can relate. I too have never brought it up to my doctor but always blamed it on weather in some way. I feel like a lot of us do this. You are definitely not alone!

    Always dancing,
    Elizabeth (team member)

  • Erica.Adele
    6 days ago

    Wow, I never thought the crusty, scabbing nose was another symptom of Crohn’s! I also seem to have some sort of “rash” that my GI can’t explain. It’s not hives, it doesn’t itch or hurt, it just exists on my torso, chest and inner elbows. Makes you think of other possibilities.

  • thedancingcrohnie moderator author
    5 days ago

    Hi @erica-adele,

    Could it be erythema nodosum? Here is an article with more info: https://inflammatoryboweldisease.net/symptoms/erythema-nodosum/

    Always dancing,
    Elizabeth (team member)

  • Jenjen
    6 days ago

    Yes! I’ve had Crohns for 15 yrs and I’ve never heard of some of these.
    My oddest extraintestinal symptom is neuralgia, on my forearms and between my fingers! So painful I’ve had to remove my wedding ring at times. Took ages before I made the link, as it isn’t related to wether I’m in flare or not.

  • thedancingcrohnie moderator author
    5 days ago

    Sounds like it can definitely be a link @jenjen. I haven’t heard of that one before. Oh the things Crohn’s throws at us, right?

    I hope you are feeling better these days.

    Always dancing,
    Elizabeth (team member)

  • ConnieT09
    6 days ago

    The up until now completely unexplainable nose scabbing, yes, it is the absolute WORST! Mine always seems to happen in (or around) the same spot and nostril too! One day my nose is perfectly fine, the next, it is a crusty bleeding and oozing mess. I addressed this ‘phenomenon’ with my GI and he seemed a bit skeptical as to whether or not it was related to Crohn’s …now I can show him proof that I’m not the only one who this happens to!
    There are some things that can be certainly said for our disease- it’s never dull and there’s a steep (and sometimes uncomfortable) learning curve. I now also have small red bumps on my torso and legs, ugh. I thought ‘maybe’ it was shingles at first…GI says it’s not…derm says it’s not…but neither have said much beyond that. Some have tiny pustules, some do not. Some are painful, some are not, but none of them are itchy (at the moment, knocking on wood!!) While I’m tired of things constantly cropping up, I’m so glad I’ve got a place to bounce things off of fellow IBD sufferers. Feel free to chime in if you have any thoughts or ideas on my latest thing, LOL!

  • thedancingcrohnie moderator author
    5 days ago

    Hi @conniet09,

    I’m sorry you have to deal with the scabby nose too! Is it not the worst?

    It doesn’t surprise me that your doc brushed it off. I never have even brought it up to my doc because it didn’t occur to me until after the fact that it had to be Crohn’s related. I’m glad you don’t feel so alone.

    As far as the bumps you are experiencing, it could be erythema nodosum. I have this before and mine were very painful. Steroids are what made them go away. Here is an article with more info about it that might be helpful: https://inflammatoryboweldisease.net/symptoms/erythema-nodosum/

    I hope this helps some!

    Always dancing,
    Elizabeth (team member)

  • Julie Marie Palumbo moderator
    2 weeks ago

    OMG I had the nose scabs, too! It was awful, and you nailed it when you said that it feels like cement.

    I had to use a special cream from my ENT and it eventually went away, but it was extremely painful and uncomfortable. Ah the joys of Crohn’s 🙁

    –Julie (Team Member)

  • thedancingcrohnie moderator author
    1 week ago

    Ugh! Sorry you’ve had to deal with this one. It is the worst and so uncomfortable!

    Yes, the joys of Crohn’s lol.

    Always dancing,
    Elizabeth (team member)

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