How to Help Others with IBD

Whether you have IBD or you know someone IBD, there are several ways to help people who are having a tough time with their disease.

The first is very simple: Just be with them and support them; let them know you’re there for them. When I was in hospital, I received many messages and gifts from friends and family. This helped me to stay positive, and it was nice to know that people were thinking of me and hoping I would get better.

If you want to help on a bigger scale, become involved with the Crohn’s and Colitis Foundation, which raises money to help people suffering from IBD. You can donate, or you can take part in fundraising events. By volunteering with the foundation, you can help many people around the world.

Volunteering at your local hospital is also a great way to help people with IBD. Patients don’t see many people besides their families and the staff, so seeing a friendly face is always nice. You can visit and play with younger children, or you can talk to older kids, young adults, and older people who have IBD.

When I was first diagnosed with IBD, my friends didn’t know what they could do to help when I was experiencing a flare-up. They found these ideas very helpful. By being a good friend and listener, donating if you can, and volunteering with a foundation or local hospital, you can help others with IBD.

I also did some research and found great articles and information on how to help others. This blog post gives specific information for caregivers. This information set also explains how to support someone with IBD. Lastly, this article gives a few easy tips on how to handle being around someone with IBD. 

 


Anger and IBD

It’s common to feel angry when diagnosed with IBD, and even for years afterwards. When I was first diagnosed, I didn’t understand the disease well, and I didn’t realize how it would affect my life. I knew I would no longer be able to eat the foods I loved. I would no longer be able to dance, and suddenly losing an activity I had loved since childhood made me feel lost and angry. I would have to spend less time with my friends, and when I went on trips I was constantly on edge, worrying that I would make a mistake and eat something that caused a flare-up. Over time, all these emotions have settled, and I’ve realized that the disease is manageable.

Even if you’re angry and frustrated about the situation, there isn’t much you can do but accept it. You have to experiment with medications, listen to doctors, and change your diet and fitness routine. You have to learn to lean on others because you can’t do it by yourself. You can’t shut people out. I used to spend most of my day in my room with the door shut because I wanted to avoid being around people. My anger made me want to lash out at those around me. My parents would hover over me as if I had become fragile, something they had never done before. My friends distanced themselves from me because they didn’t know what to do or how to comfort me. I could feel that everyone was nervous, and they were treating me differently than before.

This feeling will eventually pass. Your family and friends will become used to the disease and will stop asking you questions all the time. If you learn to accept the disease yourself, then they will too. The disease affects your body, so they will trust you when you tell them that you are okay.

Although I can’t give you advice about dealing with your anger when you are having a hard time accepting your disease, I can tell you you’re not alone. I’ve been through it as well. I sometimes still feel angry when I think about my situation, but I know there’s nothing I can do about it. I just have to try my best to get on with my day. This disease has become a part of my life: It doesn’t feel abnormal to have ulcerative colitis; it feels like it’s a part of me. Sometimes, accepting the anger is the only way to move forward.

This article gives four different ways to help cope with the anger that sometimes comes with IBD.

 


Healthy Paleo Snacks

Over the years, I have found a few favorite snacks that I would recommend to everyone, but especially to those suffering from IBD. Not all of these snacks are paleo or SCD friendly, but none of them have bothered my stomach. Please note that I do not consume these snacks when I am in a flare – during a flare, I try to follow the more basic form of the SCD diet.

1. Smartcakes 

These are muffins that come in four different flavors: chocolate, cinnamon, tangerine, and coconut. My personal favorite is cinnamon.

2. Fatsnax

These are keto-friendly cookies. They come in multiple different flavors, but my favorite flavor is chocolate chip.

3. Lentil Chips

Lentil chips can be found in most grocery stores now, and they are a great replacement for other types of potato chips or corn chips.

4. Beef Sticks

Organic beef sticks without any sugar are great as protein snacks.

5. Trader Joe’s Dark Chocolate Honey Mints

These chocolates are SCD, and they are one of the first desserts that I was able to eat. They are only available at Trader Joe’s.

6. Lara Bars

Lara Bars are available pretty much everywhere and are great protein bars. My favorite flavor is peanut butter.

7. Snapea Crisps

These crisps are amazing, and you can even find them at the airport, so they are great for traveling.

 


Exercise and IBD

The side effects of IBD, such as weakness and fatigue, often lead people to believe that all forms of exercise are off limits. People with IBD can, however, exercise and keep in shape in ways that will not cause symptoms to worsen. With the exception of being in a serious flare, consistently working out is always possible.

 

Low-Intensity Workouts

 

Working out at a low level of intensity is great for patients suffering from weakness since doing so requires you to exert minimal energy. Many free online videos demonstrate low intensity workouts. Some of these workouts you can even do at home.

 

High Intensity Workouts

 

These workouts are best for patients who were very athletic previously to getting diagnosed with or experiencing symptoms of IBD. The exercises are great if you experience fatigue but not weakness, and while they are usually shorter, they tend to require more energy.

 

Going to the Gym

 

If you can drive and feel you have the strength or energy to work out using machines, then going to the gym where you have proper equipment is perfect.

 

Cardio vs. Strength

 

I personally find that strength workouts are less exhausting than cardio workouts, so if you have less energy, I would recommend strength workouts.

 

When to Skip Working Out?

 

You should skip working out if you are experiencing severe symptoms that would prevent you from being safe while exercising. You don’t want to take a chance and hurt yourself just because you wanted to get in an extra workout.

 

IBD doesn’t mean you can no longer stay in shape. I have continued to work out since I have been diagnosed, and it hasn’t been that difficult. My uncle suffers from Crohn’s Disease, and he runs marathons multiple times a year. If you listen to your body and work out at a pace that is right for you, you will definitely be able to exercise.

It may seem impossible to stay active after being diagnosed, but there are plenty of people who have successfully stayed fit. Everyday Health wrote an article about nine professional athletes with Crohn’s Disease who did not let their disease get in the way of their careers. 

 


Talking to Your Friends about UC

Explaining to your friends what ulcerative colitis (UC) is, why you have it, and how it affects you can be difficult. UC can make you want to hide from everyone in the world, but that isn’t a realistic solution. At some point, you will have to open up to people about your disease. Doing so won’t be easy, but it definitely isn’t as hard as you think.

            The first people you may want to inform are your closest friends. You don’t want to have to hide your disease from the people that you love and trust the most. Because they are your closest friends, they will most likely be understanding and caring about the issue. They won’t bother you about it unnecessarily, and instead they will try to keep it in mind and make sure you are feeling okay. The more open and honest you are, the more easily they will comprehend your disease and the more likely they’ll be empathetic.           

In the case of telling friends that are not extremely close to you, the best course is often to tell them what you suffer from without going into too much detail. You can tell them what UC is and what the major problems are, but you don’t have to tell them everything if you are not comfortable doing so. If they ask you about your experience, be honest, but don’t feel like you have to open up completely. You should never feel obligated to tell someone about your UC if you don’t want to.

            When dealing with acquaintances, you should probably be more vague and general. Acquaintances don’t really need to know much about your UC if they don’t know you that well, and you probably don’t want to tell them much. Personally, I have always preferred to use the terms “stomach thing” or “autoimmune thing” to describe it to these people. When you say something like that, people tend to understand you don’t really want to go into detail.

            These tips may make explaining UC sound easy, but talking about your experiences with this disease is certainly not easy by any means. I do hope, however, that these tips can get you started on opening up to people. UC probably feels a little embarrassing to you, but others don’t tend to view it that way. They want to help and to understand you better. Most people will not judge you for having a disease you cannot control. Try your best to be honest, but if you aren’t comfortable, do not feel forced to say more than what’s necessary.

 


504 Plan

For a student struggling with IBD, a 504 Plan is imperative to academic success. A 504 Plan is developed for a student with a disability by his or her school to provide support. This form of accommodation eliminates discrimination against these children and protects their rights. Known as a 504 Plan, this accommodation was created in Section 504 of the Rehabilitation Act. A 504 Plan usually includes accommodations, such as environmental changes, instructional changes, and/or curriculum changes.

Such accommodations typically mean that a student may receive extra time on assignments, shortened assignments, and/or separate assignments. Additionally, a student on a 504 Plan may be allowed to leave the classroom if necessary and may be able to take medication or eat and drink in class. As part of a 504 Plan, teachers may also be able to help a student catch up on missed assignments or classes, and the school may even provide private tutoring if needed. These accommodations help students with IBD tremendously, particularly during a flare but even while dealing with daily symptoms.

Public schools are legally required to follow 504 Plans, but even for students attending private schools, it is definitely possible to convince them to follow the plan or at least arrange certain accommodations. Most schools genuinely care about their students, and even if they are not legally required to provide accommodations, they will most likely be inclined to follow the plan.

Not only does a 504 Plan help with everyday school work, but it also helps with standardized testing. If you are taking the PSAT, Pre-ACT, SAT, ACT, SAT Subject Tests, etc., you may be eligible for accommodations during the testing process. For instance, you may be able to take the test privately or with a small group of people. You may also be able to have extra time and/or stop-the-clock breaks, or you may be permitted to eat and drink during the test. The standardized testing boards may be able to provide other accommodations if you apply for them and include a copy of your 504 Plan. 

If you suffer from IBD and don’t have a 504 Plan, it would be exceedingly beneficial for you to look into it. Accommodations in school and during standardized testing can help counteract some of the negative affects IBD can have on your academic success. A 504 Plan allows those suffering from IBD to have a fair chance at academic success—which in turn helps remove the negative impact IBD might have on their college applications.

The Crohn’s and Colitis Foundation have a template section 504 plan for children with IBD.  I also found an article that explains how to receive accommodations through a 504 plan, which definitely simplified the process. 

 


Flying with IBD

 

If you have IBD, you may be concerned about traveling long distances by plane. Even though you may be worried and feel that it’s impossible for you to travel, there are ways for you to prepare for long journeys.  

 

Medication

  • Make sure to bring an adequate amount of medication to last for the entire trip, as you don’t want to end up without any medication.  
  • Bring your prescription forms just in case you do run out of your medication, so you can get it refilled as soon as possible.  
  • Keep your medication close by, preferably in whatever bag you may be holding. Do not keep it in a checked bag if you are traveling- your luggage may get lost. 
  • Take over-the-counter medications with you to help manage milder symptoms. 

 

Documents

  • Keep some form of your medical history with you while traveling. 
  • Keep your doctor’s phone number saved in your phone for emergencies. 
  • Keep your insurance card with you at all times. 

 

 

Booking and Preparing  

  • When booking your flight, try and find a seat available in the aisle and close to a bathroom. 
  • Book a specific meal plan for your flight ahead of time, so you can eat on the plane. 
  • Bring snacks that are appropriate for your specific diet needs. It’s better to bring them from home than it is to buy them at the airport. 
  • Buy a water as soon as you arrive at the airport, so you don’t become dehydrated on the flight.  

 

 

Asking Questions  

  • See if you can find a map of the airport or ask an employee where all of the bathrooms are located. 
  • There are cards available that allow you to skip the line in the bathroom if you let the airport know ahead of time. 
  • Ask if you can upgrade your seat to a more comfortable area if possible. 

 

Being Safe 

  • Get all of your vaccinations ahead of time, especially if you are leaving the country. 
  • Don’t travel if you feel like you are getting sick. It could make your symptoms worse. 
  • Be careful with eating. Airport food is not always the freshest or the healthiest, and it could potentially harm your digestive system.  
  • Get travel insurance to cover your IBD problems if possible. Make sure that you are fully covered before flying.  

 

It is fairly easy to fly with IBD after you do it a few times.  Don’t be afraid to speak up and ask the employees’ questions if necessary. Don’t let yourself suffer in silence. Traveling is meant to be fun not to feel like torture.