4 Hacks For Living With An IBD

We love giving you the good news about novel medical approaches, breakthroughs, promising treatments in development and clinical trials that seem to be on the way to finding better solutions.

We love doing this because we’re passionate about the world of possibilities that research opens the doors to, we love doing this because it gives all of us hope that better things are on their way and the medical conditions we’ve come to think of as incurable can one day be completely forgotten.

But some of need more than hope. Some of you experience debilitating symptoms that – honestly – mess up your whole lives, give you social anxiety, restrict your diets and activities, limit your ability to perform tasks or engage in your passions and hobbies and overall just give you one hell of a tough time here and now.

We get it. FindMeCure believes in clinical trials because we value and understand how precious that hope for recovery is. But we also understand the need to cope with reality here and now.

So, in order to help you do just that – cope better with your reality – today we’re talking IBD life hacks. None of that ‘drink more water’ nonsense, only real-life advice that other people swear by. Some of it might not work for you but if even just one item on our list makes your life a bit easier, it’s worth the extra effort.

And when we say ‘extra’ we mean just that – these hacks here are complementary to your regular treatment, not a substitute to proven medical interventions. So, by all means, go to a naturopath if that’s your cup of tea but never put your life in danger by discontinuing medication, especially on your own accord and unsupervised.

First off our list, some people swear by activated charcoal. They also promise it has no taste whatsoever, even though it looks like something bound to be disgusting – it’s a black powder substance that’s meant to be dissolved in warm water.

To be fair, activated charcoal has a long history of being used for its antiseptic properties with ancient Hindus purifying their water with it. In the 1700s activated charcoal was already used in cases of excessive stomach acidity, after being forgotten in the Middle Ages. The first person to use activated charcoal in medicine was Hippocrates and that guy typically gets a lot of credit for his innovative approached at that time.

If you decide to give it a go, keep in mind that activated charcoal is widely used in cases of drug overdose and poisoning. It binds to the drug substance and helps the body get rid of it. In other words – don’t take it with your medicine. And of course, consult your doctor first.

Another thing that seems to help a lot of people during a flare up and literally pops up in every other personal account are heating pads.

“I burn out an average of 3 heat pads a year.”, one member of the Crohnsforum.com says. “Another little trick I learned is to buy Therma Care self-heating pads. They are supposed to be used for the back, but I have learned to put them over my tummy & they help take the edge off.”

“I never used or needed one until a few months ago. I finally put it away now, but I was really surprised how effective it was. It was as good as a painkiller.”, another member of the community reiterates.  

Why does heat work? Perhaps it has something to do with improving circulation, relaxing muscles (and by extension – muscle spasms) or it might be that the heat simply serves as a distraction from the pain. It might be a lot of other factors but the bottom line is – heating pads seem to be universally recommended by people who experience IBD symptoms.

Some caution is advised as well, though. A heating pad while generally safe can still burn your skin if you accidentally fall asleep on it or forget to remove it after a while. Some of them also use electricity, so you have to be careful with that too – no water-related activities while the heating pad is on your skin. And while we’re at it – maybe don’t put it directly on your skin at all.

A few weeks ago we did a kind of a ‘recap’ of studies done on nutrition in IBD. we specifically researched what scientists have to say about two of the most controversial food groups when it comes to inflammation-fighting diet: fiber and gluten.

There are people, however, who make carbohydrates in general to be the villain and… it seems they might actually have a point. A study from Rush University in Chicago came up with the conclusion that “at least a subgroup of patients with IBD may notably improve as a result of following the SCD”.

But what is SCD? The Specific Carbohydrate Diet was created in 1940 by American doctor Sidney Haas and it’s based on the principle that some carbohydrates require more effort to be digested and that makes it harder on the already inflamed digestive system.

SCD lets you eat monosaccharide carbs that include fruits, honey, and glucose, but it requires you take out all other carbs from your menu, including all grains, milk, potatoes, soy, and refined sugar.

Such a drastic removal of whole food groups is not endorsed by most nutritionists but Victoria Young says that’s how she overcame her ulcerative colitis. Young eventually discontinued her medication but remained under supervision, going for regular check-ups at an IBD clinic. She says she still has flare-ups but they’re not as poignant as before she went on the diet, and she adds: “Since I was having flare ups on medication too, this approach still feels preferable”.

Accounts like hers sound hopeful and inspiring but remember to talk to your doctor before you make any decisions about your treatment. Even the study Young herself refers to emphasizes that not all people with IBD improve as a result of the diet.

And, lastly, reach out. It may sound like your social life doesn’t have a direct impact on your IBD – in fact, you might think, it’s the other way around. But reaching out, talking to your loved ones, seeking counseling or simply just admitting out loud you have it hard can be such a relief.

A close friend of one of our team members says about his Crohn’s disease: “It stops me from going out as much as I’d like to, I miss out on a lot of opportunities to socialize and have fun or even just do a job I’m interested in.” He admits he feels a lot of shame related to his condition. “I feel embarrassed refusing invitations, a lot of people probably believe I just don’t like them.”

Being open and honest about what you’re going through can not only make some situations a lot easier and less embarrassing but also foster emotional healing and bonding with the people closest to you.

If these tips sound exciting and the prospect of putting some extra effort into managing your condition makes you feel empowered, check out some clinical trials on FindMeCure for the opportunity to participate in the development of new, better treatments.