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Being diagnosed with IBD will have both minuscule and drastic changes to someone’s daily life and routines. We are met with challenges others may or may not have including symptoms of the disease, side effects from medication, and routine changes. However, life does not stop with an IBD diagnosis. You can still live life to its full potential with modifications and an understanding of how the disease may affect you. You will develop new skills that will help aid you in your daily life of dealing with IBD. Now, how does IBD affect the lives of IBD warriors?
Time Management
Time management is one of the most challenging skills for anyone to learn. For some it takes years to find tactics that work for them. It is such a crucial part of everyday life. This daunting task of keeping everything in order and organized comes into play for all people with IBD. Scheduling treatments, infusions, procedures, surgeries, doctors appointments, etc. can be very time consuming and overwhelming to institute into a person’s daily life. Juggling all of this, bathroom breaks, and plans may be intimidating. It is important to manage time properly and allow time for life outside of treatment and procedures whenever possible.
Another part of life that is heavily influenced by time management for everyone but often more so those with IBD is school. Often fatigue or symptoms can cause it harder to work on homework and study. Fatigue and symptoms can come up unexpectedly and at inconvenient times. Figuring out how to manage your time and work effectively when you are feeling good are helpful for many. Additionally, many people with IBD have accommodations in place for when they may need extra time on assignments due to a flare, etc. This can make it easier communicating your needs to teachers and professors as well. Though often with time management it is often first thought of in the academic world with effectively making time to study, it is also just as important to allow yourself to have time to relax, socialize, and rest.
Symptoms and
Side Effects
Some common symptoms of IBD include diarrhea, abdominal pain, and nausea. These symptoms can present at any time, leaving people with IBD in a position of pain and discomfort. These can be debilitating causing IBD patients to be unable to function or complete tasks they would have before.
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Side effects of medications taken by people with IBD vary from person to person. This offers a wide display of how they affect individual’s daily lives and what may be necessary to combat them. Similar to the symptoms of IBD, side effects of medication may also leave patients unable to function or complete tasks they would have before.
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Additionally many medications for IBD cause immunosuppression. During flu season, many are extra cautious. And during day to day life, some who are immunocompromised due to their meds experience more frequent infections.
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It's ultimately very important to be constantly monitoring any potential symptoms and changes and checking in with your GI regularly.
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Another part of life that is heavily influenced by time management for everyone but often more so those with IBD is school. Often fatigue or symptoms can cause it harder to work on homework and study. Fatigue and symptoms can come up unexpectedly and at inconvenient times. Figuring out how to manage your time and work effectively when you are feeling good are helpful for many. Additionally, many people with IBD have accommodations in place for when they may need extra time on assignments due to a flare, etc. This can make it easier communicating your needs to teachers and professors as well. Though often with time management it is often first thought of in the academic world with effectively making time to study, it is also just as important to allow yourself to have time to relax, socialize, and rest.
Sports or Activities
Physical activity is ingrained in most from a young age to be a great road to good health and a fulfilling life. For people with IBD, even a simple run can be a challenge hard to overcome. With people’s IBD symptoms, their symptoms may leave them unable to participate in activities or sports. Symptoms can arise at any point in time leaving those with IBD the burden of worrying about if they will be able to play. Treatments and doctors appointments can cause you to miss games/practices/workouts if schedules cannot be worked around. Flare ups are a common cause for missing seasons, games, and other events. It is difficult to predict when flares will begin and end. This can hurt a player’s or athlete’s chances of participating in sports or completing full games/seasons. Many people change their exercise routine based on how they are feeling regarding their IBD. During flares, people often get tired from exercise more easily and do not push themselves as hard as they normally would. Others find that their symptoms can increase due to certain types of exercise. However,this is all very unique to the individual and varies from person to person. While it may be difficult to do what you love in a flare, exercise is a great stress reliever, no matter what form, and helps people feel better about their IBD because they can still feel strong!
Wanting to travel and see the world is not an uncommon desire. For individuals with IBD, trips and adventures call for changes when planning.
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Some IBD medication is required to be refrigerated/stored a certain way to ensure the quality and preservation of the drug. People with IBD must find ways to transport medication in a safe way to preserve the drug for proper use. Transporting medication with proof of prescription varies from state to state.
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IBD patients need to check where they are traveling and if any accommodations/paperwork are needed to bring their medication on trips with them.
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Frequent bathroom trips are common for individuals with IBD and airplane bathrooms may be a cause for concern. Specific traveling locations may not have accessible bathrooms which can cause a person with IBD to miss out on certain trips and travels.
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Eating in unknown locations can cause extra stress around traveling. Those who follow diets may need to meal prep beforehand to determine where they can eat when they’ve arrived at their travel destination or what food must be brought with them on the trip. Accommodations such as “I Can’t Wait” cards can be used on flights and in lines when traveling to make the lives of IBD patients easier.
Planning or Traveling
Despite the multitude of challenges IBD may bring, it is important to understand accommodations can be made for a majority of daily tasks and situations you may be put in. For K-12 students, 504 plans are made available to develop an easier learning experience to work around hardships the disease may bring. For college students, similar modifications can be made through disability offices on campus including dorm accommodations. In the workplace, flexible work schedules and restroom breaks are some modifications made for IBD patients. All these and more are available to you. PAC’s Accommodations Toolkit outlines more accommodations you can receive to combat barriers/challenges that come with IBD. Check out the highlight below and the link to the full accommodations toolkit!
Accommodations
With presenting symptoms, appointments, treatments, procedures, among many others, IBD patients go through both minuscule and drastic changes to their routines.
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For patients who take oral medications throughout the day, it can be challenging to keep track of the different types and when to take certain medications.
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When going out for the day, one has to remember to pack any necessary medications that they will need throughout the day.
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Students from K-12, may need to report to a nurse’s office during the day to receive medications.
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Working adults may need longer periods of time to use the bathroom and take time off for flares or hospitalizations.
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Due to the severity of a flare, you may find yourself arriving late to some scheduled events or unable to attend events in general.
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People with IBD make individual changes to make sure they are prepared for the day; for example, one may wake up earlier than before to ensure medications are worked out for the day.
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Routine change due to doctor’s appointments, infusion treatments, procedures, etc. may be inevitable and cause you to have to work around certain dates and times.
Routine Change
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