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Strange IBD Symptoms

  • By Stephanie Huston Keymaster

    There are a lot of strange or unexpected symptoms of IBD. Which symptom or experience has surprised you most since your IBD diagnosis?

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    • By TheJoeP

      I’m also cold all the time! It’s crazy… it can be 75 degrees in my place, but I’m still wrapped up in a fleece blanket. Needless to say, living with others is out of the question.

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    • By thedancingcrohnie Moderator

      Same! Being cold was a surprising one for me. It wasn’t until I got better and got my anemia under control that I realized the coldness, for me at least, was from the anemia. Now that my hemoglobin and iron levels are normal, I never get cold! Before, it would be mid-summer and I was wearing long sleeves and constantly had ice cold hands and feet. Not to mention I had to sleep in long sleeves, sweat pants and long socks!

      Always dancing,
      Elizabeth

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    • By Gillendor

      Oh my gosh me too! Why is that? I am always sooo cold!

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    • By donnab1

      I, too, am always cold. I have a partial obstruction due to adhesions from many abdominal surgeries in the past.

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  • By Meagan Heidelberg Moderator

    Thank you for sharing, Ginny4premier!
    Meagan, InflammatoryBowelDisease.net Team Member

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  • By LanaReece

    Constipation. Hemmeroids . Backaches. The never ending medicine list. The way the people you love and trust most say they understand, and you thing they do, but in the heat of the moment you realize they cant.

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    • By SusanHU

      Hi LanaReece, thank you for sharing these! It can be hard for friends and family to understand but know that we are here for you! – Susan (InflammatoryBowelDisease.net Team Member)

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  • By Jpouchmama

    Using pressure to help with painful adhesions in the abdomen, it seems that no one I talk to has this problem.

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    • By SusanHU

      Thank you for sharing that Jpouchmama! I hope you’ll find someone else who shares your experiences! – Susan (InflammatoryBowelDisease.net Team Member)

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  • By tmanuel

    My legs breakout during a flare. I have red spots all over my legs n feet. It can be painful at times and very itchy. Usually last bout 2 weeks depending on the severity of it. They give me prednisone to help with it. Anyone else experience this before?

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    • By TheJoeP

      I’ve had breakouts on my legs and back as well. The itching can drive me mad, especially in bed at night. I just use a cortizone cream because I refuse to take prednisone any more. For me, that drug is worse than the disease itself! Try taking a bath with epsom salt and tee tree oil, it helps me sometimes.

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    • By Gillendor

      I’ve had this happen to me before, but it was actually erythema nodusom. not sure on the spelling! But they were hard red inflamed skin. Felt like a bruise, really hot and annoying. They were huge though and then they started showing on my arms too, appeared really fast. Doc had me on prednisone up to 60mg to clear it up. It was crazy. That was when I was at my most severe and still getting on treatment.

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    • By Meagan Heidelberg Moderator

      Wow! Thank you for sharing! So sorry for the delay in response. We are glad that the prednisone was able to clear that up.
      Best – Meagan, InflammatoryBowelDisease.net Team Member

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    • By Julie Marie Palumbo Moderator

      Tmanuel,

      I, too, have had lesions on my legs right before my colectomy. They were terribly painful, and the only way I could find relief was to do sits-baths in epsom salt.

      Luckily, they disappeared after my surgery once my inflammation subsided, but I completely feel your pain 🙁

      Another side effect I have felt during flares is extreme joint pain (like I had to sleep on the couch because the covers on my bed were too heavy to push off of me) and high fevers. No two flares have ever been the same for me–which is why it is so important to just listen and stay in tune with your body when you think something is off.

      Best,
      Julie
      (InflammatoryBowelDisease.net Team Member)

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    • By thedancingcrohnie Moderator

      Yes! I have dealt with this in one of my worst flares back when I was first diagnosed. It was Erythema Nodosum and it was so awful. I was in the hospital when this happened and all the spots were located on my legs. It was so scary. They had me on steroids via IV and they ended up going away. So sorry you are dealing with it. I remember if the slightest thing touched any of the spots I would yelp in pain.

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  • By poonicorn

    I’m always freezing cold but rarely have low iron, I’ve struggled with anemia for a really long time so as soon as I feel a change I go straight for eggs, quinoa, or fish and am able to keep it steady. I have low magnesium quite often though which makes me really lightheaded. As for the muscle and joint aches, it is really bad during a flare and my eyes get really red and sore too. Lately, I’ve been really nauseous and don’t really know what to make of it but I have a GI appointment in a couple of days.

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