Putting IBD Pain Into Words
Last updated: June 2022
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 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.
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, staring 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.
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 recalibrate.
It took me about 2 months to recover, and even then I wasn't 100%. With my cCsections, 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 it, 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.
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