The Crap-tastic Guide to IBS, Pt. 1: What is This Alien Thing That Has Taken Over My Body?

Maybe it’s a new resident, or maybe you’ve cohabitated with this alien thing for years, like me. Don’t worry, I’m here to tell you all the good news about living with Irritable Bowel Syndrome (IBS). Like how it’s incurable. And how doctors don’t really know what it is. And how your friends might not want to hear about it.

Did I say good news? I mean, I guess there is this one piece: it won’t kill you. It’s just a nightmare to live with.

When I was officially diagnosed with IBS after a colonoscopy, I told the specialist I was in pain about half the time (i.e. I’d go for a week or two of functioning all right, followed by a week or two of random attacks of abdominal pain involving the need to rush to the bathroom and sit there, in agony, often for hours). Word for word, this is what the specialist wrote back to my doctor, after he sent me packing with no plans for follow-up or treatment: “Fortunately for her she is only symptomatic half the time.”

I’m sorry, fortunately? Oh, happy days, I’m only in pain half the time, and the other half I’m exhausted and malnourished as I try to recover, only to repeat the cycle again. Thanks, doc.

“People are weird. We keep trying something because we ‘want’ it to work.”

Here’s the deal with IBS: It is a diagnosis of exclusion. This means there is no dedicated test that says yes, you have IBS. Instead, you have to be checked for all the other things that your symptoms might be, such as Crohn’s Disease or Celiac Disease. If your tests come back negative for all the other possibilities, your doctor will go over your symptoms with you— (Diarrhea and/or constipation? Check. Abdominal pain, cramping, or bloating? Check. Change in stool frequency and/or appearance? Check. Cramps that are relieved with a bowel movement? Check.)—and then diagnose you with IBS because there is nothing left.

At the time of writing, the medical community doesn’t know exactly what IBS is, what causes it, or how to fix it. There may be some connections with bacteria in the gut and conditions like small intestinal bacterial overgrowth (SIBO), but there’s just not enough research. In fact, this alien thing could be a bunch of different conditions in different people—conditions that the medical community hasn’t figured out yet and have similar symptoms. Who knows! Regardless, I think I should get to name my monster, since it’s my disease. Ichabod. Done.

You’ll find a lot of IBS guides that claim they can fix your symptoms through diet. This helps for some people (I’ve heard good results from the low FODMAP diet). However, I’ve tried several of these, and they haven’t worked for me. They’ve made me lose weight when I’m already underweight and I haven’t gotten enough nutrition. If you follow advice that is supposed to help, but it doesn’t, don’t keep doing it. “Duh,” you say. I know, I know. But I tell you this because I kept following a diet for far too long when it actually made things worse, not better. People are weird. We keep trying something because we “want” it to work.

You may definitely notice that some foods trigger your symptoms and will want to avoid those. Personally, some vegetables, particularly broccoli, onions, and garlic, don’t sit well with me, as well as a lot of rich dairy. But the weird thing about my IBS is that sometimes I can eat these foods and I’m fine, and other times they seem to trigger an attack. What gives, Ichabod? At least you could be consistent with your shenanigans.

“One of the best ways to live with this creature is to accept the fact that your life may look different than it used to.”

IBS has also been linked to stress and anxiety. These difficult emotions can wreak havoc in your gut. The pain, in turn, can make the stress even worse! It’s a vicious cycle. I am still learning how to relieve stress and tension (I’ve tried yoga, physiotherapy, massage, and, most importantly, releasing feelings of guilt about my symptoms when I can’t keep up the same activity level that others can.) Making friends with people who are understanding and don’t guilt you when you don’t show up for the twentieth time to a planned event has helped, as well.

Doctors tend to go into symptom-treatment mode when you see them about IBS. They want a specific symptom, say, constipation, to talk about and they’ll prescribe or suggest something, say, fiber or laxatives, to treat that. The problem with this is that the body is this large, integrated system and its parts all affect each other. Treating one symptom is like putting a bandaid on it  without addressing what is causing it to constantly appear. This is why, as your IBS goes on, you may start seeing other symptoms popping up. Stress is one, but there may be others. I have experienced vitamin B12 deficiency, iron deficiency, insomnia, fatigue, and even pelvic floor dysfunction that may be related to IBS. So, you know, keep a lookout for those extra problems, and try to find specialists that will look at the body as a whole (easier said than done, I know).

One of the best ways to live with this creature is to accept the fact that your life may look different than it used to. It will for sure look different than healthy people’s lives. And that’s okay. It took me a long time to realize this—that I don’t have to push myself, that I can take time to rest, that I can be in pain and accomplish nothing and still be valuable. It’s a lot of learning to live with Ichabod, rather than fighting against him.

If there’s anything I hope you readers take from this blog series, it’s this: You are still a valuable human being, even though you’re roomies with your own strange, unpredictable alien. It is painful, but it is possible to cohabitate together.

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A chronically ill, geeky writer’s thoughts. Topics include disability, sci-fi and fantasy books, video games, TV shows, and other things I care about. Check out my 2021 series on how to write disabled characters. Sign up for my newsletter to receive blog posts directly to your email.

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