What It’s Really Like Living With Short Bowel Syndrome

Living with Crohn's disease and short bowel syndrome (SBS) means navigating an invisible but relentless battle that extends far beyond the physical. Over time, the anxiety and depression that accompany unpredictable flares have woven themselves deeply into my existence. I can no longer separate the disease from the dread, my body's betrayal from my mind's exhaustion. The psychological weight of living with Crohn’s and short bowel syndrome only heightens the daily unpredictability.

Over decades, I have developed strategies that work for me. But as all IBD’ers and SBS’ers know, what works for one person may not work for others, even with the same diagnosis.

Daily habits with short bowel syndrome

Handling urgency

The main problem I have with SBS is that I sometimes need to go to the bathroom within minutes of eating. It can depend on what I eat, but generally within 30 minutes, sometimes sooner. Imodium helps to a point, but I take more than the recommended dose (my doctor's advice), again depending on what I eat. Certain foods pass through faster than others.

Toilet access

A daily mental struggle I contend with is I can never be spontaneous unless I know for a fact there is an easily accessible toilet. Before my ostomy surgery, this was essential. With the ostomy, it is less frequent, but I still need a toilet. If I know I am going out that day, I won't eat, depending on the time of day. It’s the easiest and hardest part of struggling with SBS for me.

Errands

If I need to do some form of shopping, I do it first thing when stores open, before breakfast. Or if I know I am going out. But if the stores don’t open until later, I won’t eat until I get home; sometimes that’s not until lunch. I will drink water, because it makes me feel full, and I have been used to not eating for almost 4 decades.

Advice

I've also become used to others constantly telling me I need to eat, and I simply explain that I don't eat when I am going out.

Travel

I definitely won't eat if I'm flying, just water. The thought of having to go to the toilet on a plane or of my bag leaking outweighs the thought of eating. Food doesn't stay inside long enough.

How I eat with short bowel syndrome

I already struggle mentally with what I can eat and when I can eat, and I also have to remember to do certain things while I eat:

• Chew food thoroughly: Slows down digestion and breaks down nutrients for easier absorption
• Eat 10+ small meals daily: Reduces intestinal stress and helps slow overall transit time
• Separate liquids from meals: Avoiding drinks while eating prevents food from being pushed through too quickly
• Limit simple sugars: Cutting back on glucose and fructose prevents excess water from drawing into the gut and worsening diarrhea

The balance of timing with SBS

Over nearly four decades, I've developed strategies born not from hope but from necessity. My life is dictated by timing; I maintain a physical calendar on my fridge like a prisoner marking days, mapping out my existence around the location of toilets, because spontaneity is not a luxury I've chosen to forgo; it's a freedom I've never truly had.

While ostomy surgery reduced physical urgency, it did nothing to lighten the mental weight of constant calculation. An endless vigilance that forms the backdrop of my daily life.

An invisible illness

The reality is both simple and devastating: my survival depends on meticulous planning. It is essential I understand my body's unpredictable and often cruel rhythms. I must accept that the invisible nature of my illness, both the physical torment and the psychological weight, means I alone must navigate the daily, hourly, moment-by-moment tension between trying to live fully and simply trying to survive.