My father was diagnosed with ulcerative colitis three years ago, and there is a likelihood that it will turn into Crohn’s. Crohn’s Disease and ulcerative colitis are two types of Inflammatory Bowel Diseases (IBD) that severely affect the gastrointestinal tract. People with Crohn's suffer from sudden urges to run to the toilet, as well as diarrhea, abdominal pain, fever, and weight loss. In more extreme cases, an ileostomy needs to be performed and a colostomy bag is inserted.
An estimated 1.6 million Americans suffer from IBD, and there is still no cure. Equally isolating for people with Crohn's and colitis, these chronic conditions aren’t exactly easy to talk about, since the majority of the symptoms take place in the bathroom. In other words, if someone close to you is struggling with Crohn’s or colitis, chances are, they need your help more than ever.
When I visited my family over the holidays after a year away from home, I was frightened by the physical and emotional drastic changes I saw in my dad. Luckily, I found these six ways to be a solid source of support for him as we figure out how to navigate this disease — together.
1. Learn As Much About The Disease As You Can
Because Crohn’s and colitis aren’t as common as diseases like cancer, the average person isn’t very familiar with their symptoms and side effects. While they’re both chronic inflammatory conditions under IBD, Crohn’s affects the whole gastrointestinal tract, while ulcerative colitis is limited to the colon. Both disturb the body’s ability to digest food, absorb nutrition, and eliminate waste in a normal way.
Luckily, there is a great deal of information available online about these conditions. The Crohn’s & Colitis Foundation of America makes free webcasts available regularly to anyone who is interested in learning more about the diseases. You can hear from doctors and specialists about how IBD affects daily living, as well as which medications are most effective. Crohn’s and Colitis Canada offers a list of educational resources as well. I ordered a few used books from Amazon and made it a habit to peruse through them during my morning coffee(s).
2. Cook Food For Them That They Can Still Enjoy
For people with Crohn's, diet is a big deal, since it’s the primary cause of gastrointestinal issues. Health professionals advise people to stay away from inflammatory foods, especially processed or refined grains, fiber-rich foods, and some dairy. Constantly fretting over every single ingredient can be exhausting, though. If you unearth appropriately delicious recipes to whip up for them after they’ve had a long day, they’ll be grateful for your help.
The quality of people’s basic social lives can crumble when they can only eat certain things. What seems like a straightforward dinner party can be a torturous event. I saw this happen to my dad over the winter holidays — everyone was enjoying wine and glorious carbs and asking awkward questions about why he can’t have just one small piece of apple pie. My mom and I studied the Specific Carbohydrate Diet and made plenty of yummy dishes for New Years Eve that he could devour free of worry.
3. Find Ways To Be An Advocate
You don’t have to donate half your salary to a non-profit to call yourself a fighter for those diagnosed with IBD. It can be as simple as attending a Crohn’s and colitis event, such as fundraising walk programs or a summer camp for children with IBD. Additionally, you can see if there’s a local chapter near you that could provide regular, personal support for your loved one. My dad lights up when he spends time with another individual who is also battling ulcerative colitis.
The more families and friends get involved, the more likely it is that funding will be given to research and treatment programs, giving our folks a greater chance at a cure. Besides, just being part of the conversation is rewarding. Watch some inspirational TED talks in which everyday people speak honestly about living with Crohn’s.
4. Offer Support At The Doctor's Office
With all the confusing jargon tossed around at the doctor’s office, Crohn’s or colitis patients come home with a pile of dense information that can be hard to wade through. Take the time to go with them to the clinician — not only will you take home more information yourself, but you’ll be a tremendous emotional support. That way, s/he isn’t alone in making crucial decisions about treatment.
It’s also important to help your loved one find the right kind of clinic. More than ever, hospitals are going for a multidisciplinary approach, which means all professionals involved — doctors, nurses, health coaches, etc. — are concerned with the whole person, not just the physical ailments. We made sure we weren't sending my dad to the kind of physicians who simply prescribed one medication after the other without being genuinely interested in his overall well-being.
5. Stay Up-To-Date On The Latest Treatments
We’re used to relying solely on the mainstream healthcare system to feel better. But sometimes there are less popular paths that can be just as beneficial, if not more. For example, juice fasting has lately been a hot topic for colitis and IBD patients. Another option is a holistic doctor — my dad was seeing one for a while, who educated him in making lasting changes in his eating habits.
Although they are small, there are new studies being done on breakthrough treatments for Crohn’s. Set a daily Google alert to your email inbox, like I did, and share new info with your family member or friend. However, be smart — don’t just agree to any regimen or clinical trial without consulting seasoned professionals first.
6. Be Patient
Depression isn’t an uncommon symptom for people with Crohn’s disease or colitis. Constant discomfort means patients sometimes become very easily irritated at the smallest things that wouldn’t faze us.
It may sound easy to keep your composure, but I found it difficult at first with my dad — his anxiety levels have risen since his diagnosis, making him more likely to snap in ways I’d never seen. Rather than reacting to incidents like this, I found it's more beneficial to remain calm and give them more love than ever before. Remember that they are wrestling with a persistent disease that never gives them a day off. You'd be surprised at how much an extra hug can do.
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