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Living with Crohn’s or colitis can feel isolating and overwhelming when you don’t have anyone else to talk to or relate to. We asked people with Crohn’s and colitis what they secretly worry about but rarely talk about. Here’s what we heard:
1. People Worry About Symptoms
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- Is my disease making me feel exhausted or am I just lazy?
- Should I tell my GI about my symptoms?
- What if I call my GI and it turns out to be nothing, will it make me feel worse about myself? Then, I worry no one will ever believe me if something is truly wrong.
- Will my quality of life suddenly change for the worse?
- Will today be the lucky day that I have another accident?
What you can do
It can be helpful to talk to a professional about your worries and fears. The ROME foundation has a resource to find a GI-specific psychologist near you. You should always tell your doctor about your symptoms, even if you feel like you are over-communicating. They want to know what you are going through and can’t help you unless they know about your symptoms. Work with your doctor and registered dietitian to decrease your symptoms so you can have more confidence in doing activities outside the house.
2. People Worry About Dating / Socializing
- Will I find someone who is okay with dating me as is?
- How can I be fun when I have chronic fatigue and pain?
- What do my friends think of me now that I’m going to less events?
- How will this affect my sex life?
- When do I tell xyz person about it at all? Should it be up front so I’m not wasting my time and they can run away screaming, or wait until we’re both invested and possibly be accused of catfishing them?
- What if the person I’m dating doesn’t get it, and doesn’t want to get it?
- Will I disappoint my friends and family for canceling again?
- How do I get through the first few dates when food is involved?
- Will I be able to find someone who will love me despite my illness?
What you can do
It can be helpful to talk to a GI psychologist to plan out how to have difficult conversations with partners and friends.
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3. People Worry About Flare Ups / Active Disease
- What caused this and how can I make it stop quicker?
- Did I cause this?
- What did I do wrong?
- Why is this happening again?
- Did I eat the wrong thing?
- Why can’t I control this?
- Why did I stress/worry so much and cause this?
- Am I doing something that keeps me sick?
- Is X (any other medical issue) related to my Crohn’s?
What you can do
Know that you did not cause your flare or active disease. Let your doctor know about any symptoms you are experiencing. They want to hear from you and can only help if they’re aware of what you are experiencing. Your doctor will be able to help you find the right medication that will work for your unique condition and help you troubleshoot when things aren’t working.
You can also work with an IBD registered dietitian to find a diet that meets your unique needs and is sustainable. Your dietitian will be able to help you understand which foods, ingredients, and portion sizes trigger your symptoms and help you to safely and sustainably expand your diet so that you don’t feel restricted.
4. People Worry About Medications
- Did I make the right decision going on these meds?
- Are my meds working?
- What does my bloodwork look like?
- What else can I do that would help my body?
- How much weight will I gain on prednisone?
- Will my medications cause cancer in the future?
- What will happen if I don’t go on medication?
- What if my meds stop working?
What you can do
Talk to your doctor about the pros and cons of the various treatment options available to you. Let them know about your worries surrounding side effects and request a second opinion from another gastroenterologist to confirm your treatment plan. If you want to learn more about the pros and cons of biologics, check out this helpful resource. It’s very normal to worry about whether your medication is working or will stop working in the future. It may be helpful to speak with a psychologist with expertise in GI-related conditions to learn how to process these thoughts and fears.
5. People Worry About Work
- How much time off work have I had this year?
- Will they fire me?
What you can do
Crohn’s disease and ulcerative colitis may be considered disabilities under the Americans with Disabilities Act. The Crohn’s and Colitis Foundation has a great fact sheet about your rights as an IBD patient at work including answers to many commonly asked questions.
6. People Worry About Dining Out
- Will I look rude if I don’t eat much?
- Does the restaurant have more than one stall?
- Are their bathrooms out of order?
- Will the food at this restaurant everyone is going to agree with my digestion?
- Will there be something for me to eat?
What you can do
Advocating for yourself with or without making your IBD the topic of discussion is important to ensure you continue to enjoy dining out or attending food-focused events. Check out our blog post on tips for eating out which includes a number of things you can try as well as some sample scripts to use when talking to others.
7. People Worry About Traveling
- I’m sharing a hotel with others, how do I tell them that I get the bathroom first?
- Will I be okay on that flight?
- Should I skip this meal or eat something I’m not use to?
What you can do
Planning ahead for the various situations you’ll encounter when traveling will help you enjoy, rather than dread, the experience of traveling. If traveling by plane, reserve an aisle seat near the restroom in case you need to use it in a pinch. Come up with a travel plan with your gastroenterologist that you feel comfortable with. When traveling by car, plan frequent stops along the way to stretch your legs and use the restroom. Bring plenty of well-tolerated snacks with you to ensure you’re adequately fueling your body in the event that you’re hungry and can’t find a safe food option.
8. People Worry About Insurance
- What if my GI decides to no longer take my insurance?
- How much would it cost out of pocket? I found a doctor I really love who works with me and I wouldn’t want to change doctors.
- What if my prescription plan no longer covers my Remicade? I could never afford it without insurance…
What you can do
Many of the companies that make our medicines have payment programs and rebates they can offer to patients that need to pay for medicines out of pocket. If you have trouble contacting them, ask your doctor for help. It can also be helpful to ask your doctor how much their services would cost out of pocket were they to no longer accept your health insurance. Getting the facts may help alleviate some of your worries and help you plan for changes in your care team or health insurance.
9. People Worry About Pregnancy / Parenthood
- Am I ever going to be able to have a child?
- How am I going to ever go to the store or run errands with my infant now?
- What if I have to urgently stop somewhere to use the bathroom and have to strap them in and out of the car, run with my bag and baby? How do new moms with UC handle this?
- Will I pass this on to my kids?
- What if I accidentally get pregnant on my medication?
What you can do
Get the facts about pregnancy and IBD. The IBD Parenthood Project by the American Gastroenterological Association has a ton of great resources for prospective and current parents with IBD. There are also patient communities and organizations, such as IBD Moms, which are specifically tailored to mothers with IBD.
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10. People Worry About Surgery / Ostomy
- What if surgery doesn’t put me in remission?
- Will I have an ostomy forever?
- Will I always have to constantly worry about emptying my ostomy bag?
What you can do
Talk to your doctor about the risks, benefits, and outcomes associated with surgery. A gut-specific psychologist may also be helpful to help you process any worries you may have. The United Ostomy Association of America also has a ton of great resources for people living with ostomies or considering surgery. There are also patient organizations, such as Girls with Guts, where you can find resources and support from others living with ostomies.
Share to spread awareness
If you liked this post, share it with others so we can spread awareness about the realities of living with Crohn’s and colitis and tackle these worries one by one!
