Short Bowel Syndrome After Bowel Resection

We all know that Crohn's, ulcerative colitis and IBD in general affect us all differently. The common denominator is the disease itself; that's it. Symptoms and how it affects us vary, but we all deal with it in our own way.

Me? Well... here's my story about short bowel syndrome after bowel resection.

My diagnosis and 10 bowel resection surgeries

I was finally diagnosed with Crohn's disease in June 1988. Symptoms came suddenly just 6 months prior; I had just turned 20. I was a two-sport athlete, ate "normally", and had no family history of Crohn's or any IBD.

Almost exactly 1 year later, to the day, I found myself lying on my back on an operating table in an emergency, with a large, grapefruit-sized tangle of small intestine removed. My Crohn’s had flared at the ileocecal junction (where the small and large intestines meet). The surgeon told me later, after surgery, that the entanglement was on the brink of perforation when they got in there. Another few days and they would have, for sure.

This was the start of a total of 10 bowel resections over the past 38 years, which eventually led to the decision to have a permanent ileostomy with proctocolectomy. I have no rectum, no large intestine, and only about 6 feet of ileum left in the small intestine (normal ileum is 9-13 feet).

What is short bowel syndrome (SBS)?

As a result of these bowel resection surgeries, I now have short bowel syndrome (SBS). The simplest way to explain this syndrome is that my bowel is shortened or damaged (portions affected by Crohn's) and does not absorb enough nutrients or fluids from food to maintain health.

Before my ostomy surgery 6 years ago, because of SBS, I was visiting the bathroom on average 20-30 times a day… every day… for years, which led to other problems. One can imagine just how raw your anus gets with so many watery bowel movements every day and the wiping. Some days I would barely eat just to avoid going to the bathroom, but that was the dilemma I faced each day.

I already have Crohn’s, which limits the amount of nutrients my intestines can absorb, but I also have SBS, so any nutrients I could absorb were minuscule at best. Add to that the fact that I wasn’t eating at times; well, there you have the trifecta of my body not getting what it needs.

Managing malnutrition with SBS

Food, drinks, and supplements would often pass through me in less than 30 minutes, depending on what they were. Here's what I've learned helps me manage nutrient absorption with SBS:

• Sublingual vitamins: Sublingual B12 and D3 allows nutrients to dissolve under my tongue right into my bloodstream, bypassing the digestive tract
• Liquid & dissolvable: Powdered, liquid, or dissolvable tablet supplements absorb faster and easier than hard pills
• B12 injections: B12 shots every few months helps me maintain healthy blood levels
• Targeted medication: Imodium before main meals helps slow intestinal transit time to increase absorption
• Routine blood monitoring: Getting my blood tested every six months to check key nutrient levels remain stable

Along with all this, I also plan ahead. If I know I need to leave the house for errands, appointments, or just to go out, I tend to either not eat or limit my intake to avoid having to run to the bathroom, even with an ostomy. We all understand the anguish of needing to use the washroom and not having one nearby when you need it. I will keep drinking water, though. For example, if I know I'll be out for an extended period later in the afternoon, I will eat an early breakfast and nothing else until I am home.

Daily planning with an invisible illness

Living with Crohn's and short bowel syndrome means my life is a constant series of calculations and quiet adjustments, where even a simple trip out the front door requires a strategy. That is the reality of an invisible illness: most people you pass on the street have no idea what it takes just to stand there. No two journeys with IBD are identical, and our struggles won't always line up point for point. Still, I share my story because when we talk openly about the messy, unglamorous parts of these conditions, it reminds us that none of us carries this weight alone.

It isn't always easy, and some days are definitely harder than others. But you learn your limits, adapt to what your body needs, and keep moving forward, one day at a time.