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woman in pain being carried

Putting IBD Pain Into Words

Oftentimes those who don’t have IBD ask, “what does the pain feel like?” If you’re like me, it can be difficult to put into words. At the same time, the more we describe and articulate our patient experience, the better others are able to empathize and understand what our day-to-day life entails. As a blogger, I’ve come to realize that the majority of the population is either unaware of what Crohn’s and ulcerative colitis are or they think it’s just a ‘bathroom disease’. You and I both know it’s so much more than that.

As someone who was diagnosed with Crohn’s disease nearly 14 years ago, there are different types of pain I’ve experienced. Let’s break it down so it’s easier to digest.

Abdominal cramping

This can be a result of eating or drinking something that didn’t sit well to experiencing anxiety or stress that triggers pain. Picture a kitchen utensil that is used to ball fruit for a fruit salad. Now imagine how that would feel if you scraped it across your intestines, over and over again, for hours. It’s a deep gnawing pain–similar to menstrual cramps, but worse.

Pain on the toilet

Whether it’s constipation or the complete opposite, oftentimes I find myself rocking in pain in the bathroom. The simple act of going number two can feel like cramping is going on in your intestines and through your butt. I often have to take deep breaths, stare at a focal point on the wall, or look at my phone as a distraction in these moments.

Dealing with urgency

This isn’t so much a painful experience, but it’s unique to those of us who have had surgery to remove intestine. The urge to go is on a whole different level. When nature calls, it’s not to touch base, it’s an emergency. You feel the difference once your ileocecal valve is removed. That’s the sphincter muscle valve that helps us “hold it”. After my bowel resection surgery, I had an accident in my pants because I couldn’t make it from the room across the hall to the bathroom in time. It was absolutely mortifying for me. I will say this has improved greatly with time, but my ability to ‘hold it’ is forever changed.

Bowel obstruction pain

This one takes the cake for me. I’ve had several bowel obstructions and each and every time the pain is so debilitating I always vomit, I generally blackout, and sometimes I lose feeling in my limbs because of the shock of the pain that I’m going through. It’s a “stop your tracks” type of pain. The moment you swallow food, you feel pain. The moment you drink anything and swallow, you feel pain. Standing upright is so painful you often have to walk crouched over or have someone hold you in a cradle position. Picture how a groom carries his bride over the threshold. That’s how my dad had to carry me out of his car into the hospital for one of my obstruction hospitalizations.

Post-operative pain

Since August 2015, I’ve had 18 inches of my small intestine removed and have had two c-sections. First of all, recovering from a bowel resection is 10 times worse than a c-section. With a resection, part of your body is being taken out, digestion is forced to re-calibrate. It took me about 2 months to recover, and even then I wasn’t 100%. With my c-sections, I feel good as new about 2 weeks out. The incisional pain with abdominal surgery burns. If you laugh, cough, move your legs, you feel it. I will say with each surgery I’ve had, recovery has gotten easier because I know what to expect. The best thing you can do is walk and build up your steps each day. Don’t overdo, but make sure you move and get your body back in motion.

If you have IBD or if you know of someone who does, these are a few examples of what our experience is like. The number of days I’ve dealt with abdominal cramping but slapped a smile on my face to disguise it, are too many to count.

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

  • ce66396
    5 months ago

    Had jejunum crohn’s disease for more that 30 years with bowel blockages (more that I can count). Twenty years ago I discovered ice as a pain blocker. You can actually bring the pain down from a 9 to a 6 or a 7 with ice along, and that can make the difference of skworming with pain to almost manageable. Add hydrocodone or just tylenol (no more than 4000 mg /24 hr short term) and you can wait for the gas to start going thro. just my thoughts

  • thedancingcrohnie moderator
    5 months ago

    Thank you for sharing these tips @ce66396. I hope you are doing well these days. Rooting for you and your health!

    Always dancing,
    Elizabeth (team member)

  • ruthie
    8 months ago

    Apparently not suitable as I am a
    Canadian!!!!! First time this sin has
    resulted in exclusion.

  • poonicorn
    8 months ago

    This is so spot on! You really nailed it with the description which is so hard to do. I joke with my friend at work that I have to meditate on the toilet because I need to clear my mind of everything just to block out the pain and the pressure of a fistula there. Ouch. I noticed myself digging my nails into my legs a couple times when it was hurting real bad and I had to learn how to stop that

  • Kelly C (#purpleproject) moderator
    8 months ago

    I do this with my arms as well. I’ve opened up the door before and didn’t even know I had held my arms that hard! Anything to think of something OTHER than the 10/10 pain from going to the bathroom with perianal disease. Kelly, Team Member

  • myibdstory
    8 months ago

    Sometimes the pain is hideous. It is really hard to communicate this, you might look fine to most people. The cramps are right up there with labor pains.

  • Pam.Kingsland moderator
    8 months ago

    Yes! @myibdstory, couldn’t agree more. Living with this invisible illness can be so difficult. IBD is such a misunderstood disease and so many just don’t understand what you are going through. Stay strong! Sending hugs and strength- Pam (team member)

  • TPChamp
    8 months ago

    “I often have to take deep breaths, stare at a focal point on the wall, or look at my phone as a distraction in these moments.”

    Yup…I’ve had to get bite guards from the insane amount of teeth grinding I’ve done because of the pain. Great post!

  • thedancingcrohnie moderator
    8 months ago

    Thank you for writing this. Your descriptions are totally accurate and this is a good reference to show to someone who doesn’t understand.

    Always dancing,
    Elizabeth (team member)

  • Amanda Osowski moderator
    8 months ago

    Natalie – This is so well written, and so spot on. I often have trouble describing the pain to others and I will in the future refer them to this post.
    Thank you!
    Amanda (team member)

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