How to live your best life after an irritable bowel syndrome diagnosis

the thoughtful gay irritable bowel syndrome
Reading time: 7 minutes

Chronic health conditions like irritable bowel syndrome (IBS) may seem like a life sentence—that’s certainly how I felt in the first year after my diagnosis.

And yet after many nights spent doubled over on the floor, waiting for waves of agonizing gut cramps to subside, I was more than ready for a change.

Emptying out my pantry and throwing out common ingredients now identified as the culprit behind my many symptoms, I found myself wondering, “So what exactly am I supposed to eat now? Air?”

After a few weeks and a truckload of futility, I had formed a solid dependence on a sludgy meal replacement powder.

Choking down this sad substitute for food, it became apparent that if I was going to achieve anything approaching my pre-IBS quality of life, I would need to explore all my options.

What do we know about irritable bowel syndrome?

Irritable bowel syndrome is a chronic, disabling condition for which there is no definitive treatment. The condition reportedly accounts for half of all visits to gastroenterologists in the US.

IBS is classified as a Functional Somatic Syndrome (FSS), meaning it’s not unlike chronic fatigue or fibromyalgia syndromes.

A FSS in scientific terms is “characterized by the presence of one or multiple chronic symptoms that cannot be attributed to a known somatic [bodily] disease”.

The development of irritable bowel syndrome is believed to be multifactorial. That is, the condition has multiple contributing biological and psychological causes

One such cause is a disruption and impairment of communication between the brain and gut as a result of stress. More details on the specifics in this clinical review of irritable bowel syndrome

Living your best life after an IBS diagnosis

Typically after a diagnosis, you’ll work with a dietician to identify all your trigger foods, usually via the low-FODMAP diet. 

Together you’ll then reintroduce individual FODMAPS to test tolerance for each, a process that can take weeks, if not months.

An appointment at the gastroenterologist’s office may also need to be set up for you to be screened for other conditions, such as SIBO.

After these processes of elimination, the way forward however starts to get a little hazy.

Our knowledge about irritable bowel syndrome is far from complete. Symptom causes and treatment can vary from individual to individual. What works for some may not work for all.

Through my experience as a long-term IBS sufferer, however, I have found that symptom relief success is largely determined by three things: education, experimentation, and self-advocacy.

In the next few sections, I’ll list some of my hard-won personal insights, citing a range of publicly available studies.

It is important to note however that I am not a medical professional. Any statements made here regarding the efficacy of particular treatments pertain to my personal experience only.

All changes to your personal treatment protocol should be conducted with the support of your medical doctor, dietician, and/or gastroenterologist.

the thoughtful gay irritable bowel syndrome

First stop: the low-FODMAPS diet

Food plays a key role in shaping symptoms among IBS sufferers, and the low-FODMAPS diet is a common go-to.

The low-FODMAP diet involves restricting the intake of certain carbohydrates known by the acronym FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols). 

FODMAPs are present in anything from bananas to yogurt, to tea and garlic. Consuming more than the recommended amount can cause unpleasant symptoms, including diarrhea, constipation, cramps, gas, and bloating.

Some of the more well-known FODMAPS such as fructose and lactose are even known to trigger reactions among those without IBS.

The prevalence of lactose intolerance, for example, has already given rise to an entire industry of dairy alternatives, with products ranging from soy-based cheese, nondairy butter, and nut milks.

Given the complexity involved in low-FODMAP eating, it’s was with great relief that I discovered a smartphone app designed by the diet’s creators.

The Monash University FODMAP Diet app provides measurements of the FODMAP content for individual ingredients, as well as serving size recommendations.

The app is updated regularly, and serving size recommendations are known to sometimes change; in some cases, the kind of FODMAP listed may shift to another entirely.

For this reason, it’s crucial to always check the app when planning your next meal.

While the low-FODMAPS diet can bring many with irritable bowel syndrome some relief, tolerances for each FODMAP, and other possible IBS trigger foods will still need to be monitored.

One effective way to identify one’s own triggers involves keeping a daily record of everything eaten, and the symptoms.

Not all IBS sufferers report resolution of symptoms while on the low-FODMAP diet, and so I must emphasize again the importance of working with a dietician to identify your triggers.

Other dietary suggestions for irritable bowel syndrome

Intermittent fasting: I have personally found that intermittent fasting (8 hours on, 16 hours off) can ease digestive distress by ensuring my gastrointestinal tract isn’t forced to work overtime. 

A low-FODMAP tea is helpful with managing appetite during “off” hours. White, green, peppermint, mint, rooibos, honeybush, and licorice are all listed as safe.

Consider also adding a sweetener such as stevia if required. It’s zero-calorie and won’t break your fast.

Resistant starch: Resistant starch (RS) is a naturally occurring fiber. Some IBS sufferers report finding it can help with symptoms.

RS can be found in some milled grains, legumes, underripe bananas, cooked and cooled bread, potatoes, rice, and pasta, to name a few.

RS ferments slowly in the large bowel, compared to the rapid fermentation that results from eating FODMAPS, leading to the usual symptoms.

There are multiple forms of RS and your tolerance to each kind can vary. RS has been known to produce symptoms in some IBS sufferers.

RS as it turns out is my personal nemesis; nevertheless, I have found I can mitigate some RS-related symptoms with the help of the herbal remedies listed below.

Spicy foods: Spicy foods are a well-known IBS trigger. Chile is completely out for me, though I’ve found I can tolerate pepper and mustard. 

Caffeine: Caffeine is also a trigger. Even decaffeinated, it’s a no-go, probably due to the fact it contains compounds known to cause gastrointestinal upset.

Fat & oils: Eating anything high in fat or containing small amounts of oil I’ve found to be a major trigger. And apparently, I’m not the only one.

Note that cooking without fat and oil is possible, but requires some creativity. For example, I have found frying vegetables using a wok using a small amount of water can work.

When it comes to baking, you can also consider substituting oil with a low-FODMAP pumpkin variety or mashed unripe banana.

Medicine & supplements

Antispasmodics: Drugs such as dicyclomine (Bentyl) and hyoscyamine (Levsin) are a commonly prescribed treatment for gut cramps. I make sure to carry a few pills with me at all times.

Antidepressants/Antianxiety medications: One meta-analysis found that tricyclic antidepressants can help soothe global IBS symptoms.

Another study concluded that selective serotonin reuptake inhibitors (SSRIs) are effective in treating co-occurring anxiety, depression, and psychological distress. This may in turn lead to improvements in global IBS symptoms.

A psychiatrist will be able to assist with determining whether this form of treatment is appropriate for you.

Fiber supplements: These can help ease IBS symptoms for some, although more studies are required.

One study recommends consuming no more than 5g of whole psyllium husk daily. I have found fiber supplements only exacerbate my symptoms.

Probiotics: A course of antibiotics is usually recommended when treating secondary conditions such as small intestinal bacterial overgrowth (SIBO).  Probiotics can help counteract the havoc these drugs wreak on your gut microbiome.

There is evidence multi-strain supplements taken over an eight week period can improve IBS symptoms regardless of antibiotics, though I have not experienced much success in taking them.

(Interestingly, fecal microbiota transplants are being explored as a possible treatment for IBS.)

Peppermint oil: This product is available in capsule format and can treat IBS-related symptoms. On the rare occasion I dine out, I’ll take two pills to minimize the impact of eating high-FODMAP ingredients.

Carminative (anti-gas) herbs: A new study has found that a herbal compound containing essential oils derived from Shirazi thyme, ajwain, and dill can significantly improve IBS symptoms.

When consuming foods high in resistant starch I usually take half a teaspoon of a similar three-seed combination: ajwain, dill, and anise.

As Shirazi thyme is not widely available online, I decided to sub it with anise seed, another carminative.

Note that the exact FODMAP content of these seeds has not yet been measured. It is possible that consuming them could cause you to exceed your FODMAP limits.

Activated charcoal: There is some evidence that activated charcoal can help with the absorption of gas in the bowel. I take 3x 780mg charcoal pills, twice daily, along with the three-seed combo described above.

Digestive enzymes: Broad-spectrum enzymes may support digestion among some IBS sufferers, but again more studies are required

The good news is that there are commercially available enzymes targeting select FODMAPS: xylose isomerase (for fructose), alpha-galactosidase (for galactooligosaccharides, or GOS), and lactase (for lactose).

While I avoid dairy completely due to the fat content, lactase is an effective aid for those who suffer lactose intolerance. 

There is evidence that enzyme treatment using alpha-galactosidase enables IBS sufferers to consume nuts, legumes, and beans without any of the usual side effects. Taking one 400 GALU tablet with each meal has proven a godsend for me.

For a complete list of which food items the alpha-galactosidase enzyme targets, check out the Monash University FODMAP diet app. 

Addendum: As the resistant starch and fat content of nuts, legumes, and beans can cause symptoms for me, I continue to limit my intake.

Exercise 

In one trial, increased physical activity over a 12-week period was shown to improve irritable bowel syndrome symptoms.

For those of us who spend too long sitting, the current recommendation is to get 30-40 minutes of vigorous exercise daily.

Exercise is also known to improve general mental health. Given many IBS sufferers experience anxiety and depression, there’s a strong argument as ever for getting your daily steps in.

Stress

Stress: IBS is a stress-sensitive disorder that can bring your GI tract to a standstill, triggering symptoms such as gas and bloating. 

I have found strenuous activities like hikes, traveling long distances, or attending an unfamiliar or anxiety-inducing setting can trigger tummy upset. 

Having a comfortable environment and routine can go a long way to ensuring healthy bowel activity. 

Seeking support with irritable bowel syndrome

Community: Reach out to friends you’ll know will be understanding and accommodating of your condition.

Find a community of fellow IBS sufferers online, or in your local city. Don’t go at it alone.

Psychotherapy: I can’t recommend this enough. You can find a list of effective psychotherapeutic interventions here.

Meditation: I have found 2x 20-minute meditation sessions a day helps ease stress and anxiety. Consider trying some of these free guided meditations.

Gut-directed hypnotherapy: This has been shown to have long-term benefits for irritable bowel syndrome sufferers.

A range of gut-directed hypnotherapy prerecorded tracks can be purchased online. (Alternatively, you can access several free general hypnotherapy tracks here.)

Moving forward

If you’re drowning in information right now, my suggestion would be to start small.

Trial run one or two of my suggestions. If, after a period of careful monitoring, your symptoms don’t improve, I would invite you to test another.

Pick and choose what works best for you, but always remember to seek professional insight into any new treatment protocol. The National Center for Biotechnology Information website is a good place to explore studies regarding current, emerging, and possible future IBS treatments.

Finally, know that experimenting brings with it the possible reoccurrence of symptoms.

Demoralizing as this can be, take heart in the knowledge that every risk faced on the path towards healing, within reason, may ultimately prove a risk well taken.

© Ehsan Knopf. Any views or opinions represented in this blog are personal and belong solely to the blog owner and do not represent those of people, institutions or organizations that the owner may or may not be associated with in professional or personal capacity, unless explicitly stated. All content found on the TheThoughtfulGay.com website and affiliated social media accounts were created for informational purposes only and should not be treated as a substitute for the advice of qualified medical or mental health professionals. Always follow the advice of your designated provider.

How to flourish in spite of chronic illness

chronic illness COVID coronavirus thoughtful gay
Reading time: 8 minutes

As the coronavirus pandemic wears on, stories have emerged of survivors who continue to suffer chronic illness weeks and even months after recovering.

As anyone living with ongoing symptoms can attest, the challenge is never strictly physical. Being sick often carries a psychological toll, fueling stress, anxiety, and isolation.

Having myself suffered a gut disorder since my early teens, I know firsthand the restrictive – if not crippling – effect ongoing health problems can have.

What these experiences ultimately taught me however is that even when overcoming illness might seem impossible, fighting your own definition of “betterness” certainly isn’t.

An ailment unknown

From the age of 12, my stomach became permanently bloated and tender, my digestion troubled.

After a family dinner, I’d usually wind up locked inside the bathroom as my gut purged itself. Sometimes the voices of my siblings would drift out of the kitchen, and I’d hear their complaints that I was deliberately shirking post-meal cleanup. How little they knew.

Stabbing pains came and went often at random. One moment I’d be sitting at my computer, and the next I’d be stricken, doubled over, or collapsed on the floor.

These spells of agony sometimes lasted for days. During a family cruise vacation, I was afflicted by fluctuating blood sugar levels, and caught myself returning to the buffet repeatedly, wolfing down one dish after another.

Then, halfway into the trip, my digestive tract gave out. For three days I lay in the fetus position in our windowless cabin in a cocoon of darkness split by red lightning-strikes of agony.

“It’s just the stomach flu,” my mother said when I asked to be taken to the onboard doctor.

“Mum, something’s really wrong,” I insisted. “My body isn’t digesting anything.”

“They’re going to charge me $100 and all they’ll do is give you an aspirin,” she complained. “Just rest. It’ll pass.”

But 72 hours later, the symptoms had failed to ease. The constant pain and nausea had robbed me of my appetite, and after three days of fasting, my mother’s seeming indifference turned to concern.

She thrust plates of salad in my face, insisted on feeding me forkfuls despite my protests.

Days later, back on solid ground and mostly recovered, I looked back on the hellish episode as a freak incident. But chronic illness persisted.

Sticking with self-diagnosis

For the next decade, the same symptoms came and went with the suddenness and ferocity of summer thunderstorms. Their cause, at first a mystery, was eventually identified as wheat.

The symptoms after all were on par with those of Coeliac disease. And when I indeed subtracted wheat products from my diet, the symptoms eased to the point of being manageable.

My doctor suggested I get an endoscopy so I could be formally diagnosed. She explained that in order to avoid a false negative, I would need to start eating wheat again.

Having already tasted freedom, I had no intention of going back into dietary bondage. Besides, what would the test prove, other than what I already knew for a fact?

My resistance to getting tested was in part due to my parents once dismissing my symptoms as psychosomatic. 

My antique distrust of authority figures, and the fact I alone had championed my own health, left me somewhat resistant to the doctor’s suggestion. 

It was I, after, all who had determinedly spent three hours Googling symptoms; I who had found the name for my chronic illness. 

It followed, therefore, that only I could determine what was best for my own health. 

“You have no way of knowing for certain,” the doctor said when I declined the offer of an endoscopy. “It could be Coeliac disease. Or it could be something else entirely.”

“I’m good,” I said. “Thank you.”

“Well, it’s your health,” she replied with a shake of the head.

“It is,” I snapped back. Just who did this woman think she was to question my judgment like this? A qualified medical professional?

No one and nothing was going to dissuade me. Defiant, I marched out of the doctor’s office, clutching my self-diagnosis to me with the kind of protectiveness reserved for a newborn.

The struggles of identifying chronic illness

Still, I never achieved complete symptom clearance. All it took was a handful of nuts or a glass of milk to kick off a round of wind and intestinal purging, while beans had the opposite effect, bringing digestion crashing to a halt.

A dietician suggested that maybe I was eating too much fiber. She proposed I try cutting back on certain trigger short-chain carbohydrates like lactose and fructose, known by the acronym “FODMAPs”. 

But by the following week, I was embarking on a month’s long trip overseas, and soon forgot the dietician’s proposal.

Later, believing I must be suffering some kind of allergy, I attended a leading clinic. If I was hoping to come away with a diagnosis, I was instead left only with a patch of irritation on my left forearm, something akin to a mosquito bite.

The allergen prick test revealed I was reactive to American dust mites, but not wheat and diary.

The clinic recommended nevertheless I switch to a diet low in certain naturally occurring food chemicals called salicylates, amines, and glutamates. 

These chemicals are present in anything from chocolate, to coffee to cheeses. Eliminating them completely naturally proved quite the chore, and even once I did, my condition scarcely improved. 

After a few months of attempting to be vegan, things only worsened, my belly swelling as tight as a drum.

When a rash surfaced on my back like an inflamed continent, I conceded that maybe my self-diagnosis was wrong.

Previous adversities had left me reluctant to ask for help, to trust that others really had my best interest in mind. Yet this same reluctance meant I had inadvertently prolonging my chronic illness.

chronic illness COVID coronavirus thoughtful gay

Seeking treatment

A somewhat lengthy and expensive battery of tests confirmed that I indeed had been wrong about having Coeliac disease. What I was actually suffering from was Irritable Bowel Syndrome (IBS).

While both conditions share common symptoms, what my body seemed to have been reacting to was not the wheat protein gluten, which typically causes the immune reaction in Coeliacs sufferers.

My triggers were in fact FODMAPs, the carbohydrates previously identified by my dietician. This explained why my body responded adversely to high-FODMAP foods such as wheat, milk, nuts, and beans.

Had I listened to the dietician and trialed the low FODMAP diet, I would have been spared not only my usual raft of symptoms but the development of a new, secondary condition: small intestinal bacterial overgrowth (SIBO).

If IBS could be at times unbearable, SIBO had the effect of only exacerbating the symptoms.

Treating the SIBO with antibiotics decimated my gut microbiota. It also triggered a secondary infection of a parasite known as blastocystis hominis, suspected of stowing away on my body during my trip abroad.

The blasto infection sent me running to the toilet every hour, and could only be bested with still more antibiotics. 

Suffice to say, it was months before I returned to any semblance of digestive normality.

Accepting what can be changed

Part of the problem was that IBS is a condition whose triggers vary from individual to individual. One person may digest a slice of cheesecake with ease, while another will be stricken by paroxysms of diarrhea.

When I expressed my desire to “get better” to my gastroenterologist, he laughed. IBS was a “functional” condition, quite unlike more serious conditions like Crohn’s disease. Expecting complete recovery simply wasn’t reasonable.

Was this, then, what I was paying this man for? A tidy response absolving him of any responsibility? Yet another “hypochondriac” dismissal

Certainly, chronic health conditions are often complex, and the problems they throw up insoluble. But if my gastroenterologist wasn’t interested in helping me explore the possibility at least of improved health, then it fell once more to me to try.

To this end, I explored all manner of remedies: antidepressants, antianxiety medications, fiber supplements, peppermint capsules, digestive enzymes, natural supplements, antispasmodics, probiotics, exercise, hot pads, meditation, and acupressure.

By isolating potential trigger foods, I discovered that the recommended fiber supplements were actually making things worse.

Another contributing factor was a substance known as resistant starch, which can be found in many IBS-friendly staples. As it turned out, something as seemingly innocuous as reheated rice or potatoes often was more than enough to ruin my digestion. 

The modifications I eventually settled upon involved quitting coffee and curtailing fiber, fat, oil, sugar, and resistant starch. Intermittent fasting, which involved restricting my eating to an eight-hour daily window, proved infinitely helpful. 

Meals were kept to three in total and limited to reasonable portion sizes, taking the pressure off my admittedly delicate digestive tract. Adding peppermint supplements, enzymes, and anti-diarrhetics further supported my digestion.

Lifestyle changes were also in order. There was to be no more round-the-clock workaholism. Time would need to be made now for a regular exercise routine, daily meditation, and relaxation.

As it turned out, the gastroenterologist had indeed been wrong for laughing off my complaints. A better state of health was indeed possible.

While some health conditions may be in part or completely out of our control, management or easing of symptoms is always possible. Quality of life is never an unrealistic goal.

Identifying a key need and a strategy

“What do I need most?”, “Is it realistic?”, and “How do I achieve it?”

For those of us suffering from chronic illness, these three questions can be the determining factor for both our physical and psychological wellbeing.

In my case, my foremost need was being able to eat nourishing, delicious food without getting sick.

The dietary limitations imposed by IBS meant eating out was a fraught affair, so avoiding tummy upset going forward would require I make all my meals from scratch, going forward.

Even after I threw out all my current go-to recipes, many of the IBS-friendly alternatives I found online contained other foods that were triggers for me, such as oil. 

The only way I was going to fulfill my tasty food cravings therefore was by getting creative. So for the next year, I recipe tested like heck, substituting problem ingredients with symptom-free alternatives. 

Most meals I produced during this period were, for the most part, healthy, if a little bland. But by the second year, my culinary game was on the up, and I had at least four passable meals under my belt. Then suddenly they weren’t just passable – they were delicious.

As cooking IBS-friendly meals from scratch could be an expensive and time-consuming process, I began bulk-buying and batch-cooking.

This strategy ensured I spent less time in the kitchen carefully measuring ingredients. Instead of or shuffling through the supermarket, poring over the price tags of often more expensive low-FODMAP alternatives, I was now able to spend more of my time savoring the fruit of my labors.

Seeking support with chronic illness

Being forced to carefully monitor everything I eat, while managing occasional flare-ups can at times be stressful. 

Sometimes I’ll catch myself trying to “silver lining” the situation, reassuring myself of the benefits of having IBS. The forced dietary changes for example have rendered me permanently lean. 

Some fitness fanatics might consider this an ideal result, but practically speaking, not having “rainy day” body fat can be a problem during periods of illness when I’m most prone to rapidly dropping pounds.

Chronic illness has brought many periods of frustration and despair. Key to our endurance in such instances is having someone we can talk to about our difficulties. As the old adage goes, “A problem shared is a problem halved”.

While loved ones can ever truly know what it’s like to walk a day in your moccasins, they can certainly empathize. But if you find no respite in venting to friends and family members, a sympathetic-ear-for-hire may be another option. 

Therapists not only provide a supporting environment – they are specifically trained to help clients with identifying custom-fit coping mechanisms.

Therapy for some isn’t financially tenable, while others may not be comfortable opening up to a stranger. In such instances, it’s worth exploring other avenues, such as online communities or support groups for people with your condition.

Failing that, a daily “mood” diary is always a great fallback. In moments of stress or high emotion, consider jotting down in detail what you’re feeling, why, and the circumstances or situations surrounding these feelings.

Diary writing when suffering chronic illness can be cathartic for the sheer reason that it allows us to divest ourselves of burdensome thoughts and feelings. Without an outlet, they may otherwise continue to rattle around inside our brains, draining our strength and impeding our wellbeing.

Diary writing in this sense is preventative, acting as a pressure valve. It allows us to release what we are carrying in a safe and constructive way, offering us valuable perspective on our difficulties.

Takeaways

  • Be open to help – and self-advocacy.
  • Change what you can, accept what you can’t.
  • Identify one key need and how you can fulfill it.
  • Seek emotional support. Keep a diary.

© Ehsan Knopf. Any views or opinions represented in this blog are personal and belong solely to the blog owner and do not represent those of people, institutions or organizations that the owner may or may not be associated with in professional or personal capacity, unless explicitly stated. All content found on the TheThoughtfulGay.com website and affiliated social media accounts were created for informational purposes only and should not be treated as a substitute for the advice of qualified medical or mental health professionals. Always follow the advice of your designated provider.