You might have just found out your family member or friend has just been diagnosed. Or maybe you’ve just been diagnosed and you are looking for resources to share with your loved ones on how to help you. I’ve put together a few ideas on how to best support those with IBD based on 10 years of having it myself and listening to hundreds of patients who have it. If you would like to read more about my own journey, check out my interview published in Voyage Houston my about page or my latest instagram post.
I’ve listened to many people share about their experience with Crohn’s and Colitis and almost every time they have shared about the need for support from friends and family. Many friends and family just don’t know how to help or are afraid to ask questions. Below I’ve listed 7 ways you can support your loved one with IBD.
One of the best things you can do to support your loved one is to understand what IBD is. IBD stands for Inflammatory Bowel Disease which includes a variety of different classifications depending on where the disease is located. The most common types of IBD are Crohn’s and Ulcerative Colitis. It is an autoimmune disease which means a part of the disease process is that the immune system can attack it’s own tissue in the digestive tract. Although Crohn’s disease is more known to affect more of the digestive tract, both can affect other parts of the body too including eyes, mouth and joints.
What’s true about IBD:
- IBD is an autoimmune disease which means the body attacks it’s own tissue throughout the digestive tract
- IBD includes a variety of classifications, the most common being Crohn’s and Colitis
- IBD has no one cause but most research done on cause points towards environmental and dietary changes & changes to the gut microbiome
- IBD is not just limited to the digestive tract can also affect the skin, eyes, cardiovascular system and joints
- It’s important to seek treatment for IBD including seeing a Gastroenterologist, Dietitian and/or other care provider
- There is no cure, but you can get to symptom remission and stay in it long term
- IBD is not contagious
- IBD patients may have bowel movements between 1-30+ times per day
- Weight loss is common with Crohn’s and Colitis
- Nutrient deficiencies like vitamin D, B12, zinc and iron are common with IBD
- IBD can be serious or life threatening in some cases so it’s important to have a care team you trust
- When not in remission, the disease state is termed as in a “flare”
- Recent research has revealed that long term perceived stress triples risk of a flare
- Some dietary approaches have been linked to a higher likelihood of having a flare, while others approaches seem to help reduce chance of flare
- With nutrition, it’s important to work with a Dietitian that is skilled in gastrointestinal diseases such as IBD- not all Dietitians are specialized in this area
- You can be in remission and still have IBS like symptoms such as diarrhea or constipation (irritation and inflammation are two different things)
Talking about digestive concerns has not become the ‘norm’ just yet. People are often shy to bring up the topic even when their doctors! But when digestive issues overturn your life it’s hard not to discuss all the difficult parts of living with IBD. Having a friend of family member that understands a bit of what you are going through can make things so much easier. If you aren’t familiar with what your loved one is going through- ask questions. Ask questions about what they have experienced with IBD and how that has impacted them. Be sure to check and make sure they want to discuss it first and try to be understanding if they just aren’t up for talking about it. You can also attend lectures on IBD or support groups to learn more.
Ideas for questions:
- If you are comfortable sharing I would love to know more
- What’s that like for you?
Listen and Hold Space
Really listening to someones pain can be incredibly powerful. One way to you can become a really great listener is to practice what’s called holding space for a person. Holding space means to be with someone without judgment and without wanting anything back. To accept someone’s truth, no matter what they are and allow it to just be without trying to change anything. This doesn’t come easy to most people, so it’s totally normal to feel a little uncomfortable at first. Remember that it takes practice to be good at listening and holding space and it’s ok to not do it perfect. If you catch yourself saying any of the dismissive statements below, acknowledging it and trying again is helpful.
Some things you could say to help practice this:
- “I’m here with you or I want to be here with you- even through the hard parts”
- “I don’t know what to say, but I want to support you”
- “That sounds awful, can I do anything to support you?”
- “I don’t have any answers but I want you to know I support you and your decisions”
Dismissive statements to avoid saying:
- “At least…and any sentence that starts with it”. Instead of trying to find the silver lining, focus on accepting where someone is at now. Allowing people to process emotions as they come will allow them to move through the emotions in a healthy way.
- “I totally understand, I also have digestion issues”. Try to avoid comparing your issues with someone else’s. This can sometimes take away from people feeling truly heard. Also, the truth is even if you also have Crohn’s or Colitis we can never truly know the impact it can have on someone else’s life.
- “You should try this (diet, supplement etc)- it worked for me”. Although everyone eats food and many people take supplements remember you are not their healthcare provider and a diet or supplement that works for you might not work for someone else. Even in my private practice, I spend a minimum of two hours with someone learning their history, medications etc before ever advising on dietary recommendations or supplements. That alone should tell you that a lot of thought goes into making a quality recommendation that is safe for someone.
Support of their Treatment Route
There can be a variety of different approaches to take for IBD which may include medication, infusions, working with a dietitian, supplementation, further testing, massage, acupuncture etc. It’s important to support your loved one in whatever route they choose to take. Ultimately, the IBD patient is in control of their health. It’s helpful to have the support of loved ones in what works best for them. Many times IBD patients try unconventional treatments especially as they are figuring out what works best for them. However, if you feel your loved one is in a dangerous situation speaking up may be necessary. To maintain trust and openness in your relationship with them try statements like the ones mentioned below.
If your loved one is in danger and is resistant to further suggestions:
- It doesn’t seem like you are getting the results you want, can we look together at some other options for you?
- I care about you and would like you to get the help you need- are you open to another treatment route?
Understand the Challenges
Many IBD patients experience a number of challenges that make life difficult. One of the most common things I hear in my one on one consults is about how isolating IBD can be. Often an IBD diagnosis could change many areas of life such as travel, hanging out with friends and eating out. Often IBD patients have food intolerance or allergies that making eating out a bit harder. Also, finding a restroom can often be another challenge for people as urgency may limit the amount of time someone has to make it to the restroom.
Ideas on how to support the challenges:
- Suggest that they pick the restaurant rather than selecting it yourself and offer suggestions
- When eating out, pick a table in close proximity to the bathrooms
- Understand that even though they don’t appear sick, they may be in a flare or feeling bad
- Avoid complementing weight loss which may likely be unintentional weight loss due to illness
Support of Dietary Choices
Often times it can be a journey to figuring out what works for an IBD patient and everyone is different. Often times IBD patients experience well meaning colleagues, friends and family who have had a great experience with a certain diet and will recommend it to their loved ones. As a specialist in dietary approaches for IBD, I will say that nutrition and dietary interventions are often not as simple and straight forward as people think. Keep in mind that not everyone can thrive on the same diet approach especially with significant dietary challenges like with IBD.
Some people in their health journey will also uncover food allergies and food intolerance’s along the way. This can be challenging to navigate when going out to eat or traveling. Many IBD patients who are aware of their food allergies or intolerance’s will plan ahead what they will eat to avoid issues after. Having a friend or family member who is supportive of dietary choices can also ease the stress of this. I have been lucky enough to have a few friends who really understand my food challenges and have gone the extra mile of actually planning out a menu for times when I visit which is incredible. But even just a simple discussion or acknowledgment in planning out things can be huge in making your loved one feel considered and seen.
Another way to help support a loved one is to get involved in Crohn’s & Colitis organizations like CCFA or support groups. The Crohn’s and Colitis Foundation (CCFA) is a great place to stay connected. CCFA has a directory of medical professionals (Doctors, Dietitians etc), forums to connect with others with IBD and lists of upcoming events and support groups in your area. Be sure to also have the support that you need in this journey especially if you are a caretaker. You may need to process with a therapist or seek additional support.
The Bottom Line
A diagnosis of Crohn’s or Colitis can be a huge life change for a patient and their family members. Having the support they need can reduce stress and even support their health.