Navigating Relationships with IBD

As someone chronically ill, feelings of guilt, FOMO, and loneliness can be all too familiar. The severity and unpredictability of IBD can take a toll on the relationships you have with others, including romantic interests, friendships, family members, and coworkers. When i was diagnosed with Crohn’s Disease at the young age of twenty one, i quickly became frustrated that my poor health was holding me back from participating in classic twenty something year old activities. My unpredictable and debilitating symptoms made it difficult to leave my house, to follow through with plans, and to eat and drink at restaurants and bars. At the beginning of my journey with Crohn’s Disease, I was overwhelmed with feelings of loneliness and guilt when I had to miss out on my college friends' activities. I kept my symptoms and diagnosis to myself, not really allowing any of my friends to understand how to include and support me. 

Sharing your IBD diagnosis with your partner, friends, and family is a terrifying and overwhelming experience. Naturally, we strive to hide our vulnerability, but I hope to deliver advice through my own personal experience to help nurture your relationships and ensure you receive the support you deserve. 

My best advice is to share your IBD diagnosis with the people you surround yourself with. We cannot control how others react to our diagnosis, but we can control what we share with them. I often tried to hide my illness from others, and then became frustrated when disagreements arose over my frequent cancellations from flares as well as feelings of loneliness from no one understanding what I am going through. It’s important to allow those close to you to know what you are dealing with. Remember, someone that loves and cares about you will not be scared by your diagnosis, they will want to support you and be there for you in times of need. The first thing you need to do is allow them the chance to show up and support you. Be honest about how your disease affects you, whether that be generalized as last minute cancelations or going in-depth about the symptoms you experience. 

Remember your self worth. You may have inflammatory bowel disease but IBD does NOT define you. You have amazing, unique and loving qualities that make you amazing with or without IBD. Whenever I have trouble separating myself from my IBD diagnosis, I write down 5 things that I love about myself, whether that be my passion for helping others, my love for animals, or anything else that makes me, me! 

Ask for help. Be honest about your needs as someone with IBD, especially when flaring or on colonoscopy, infusion, injection and surgery days. Your friend or partner might not know how to best help you. Try to be honest and communicate your needs and wants to your partner, friends, and family to be best supported.

Create boundaries. Every person with IBD has different needs. Be honest about what you like and don’t like. Create boundaries with friends and family, especially about unsolicited advice or anything that may bother you. Has everyone heard the ‘you should try ___ (sub: yoga, veganism, meditation, etc.) and you will be cured’? My advice to create boundaries without offending a loved one is to express your appreciation and thanks but highlight how every person with IBD is different and that advice like this negatively affects you. Again, put yourself first. If someones advice or actions are bothering you, speak up and share that with them. Most of the time, people are only trying to help and this will help guide them to most effectively support you. 

As someone dating with IBD, the psychological aspect that can join a chronic illness, along with physically feeling sick, can create obstacles in relationships. Communicating with honesty will allow all parties to a relationship to feel loved, wanted, and respected. I truly hope these tips will help you navigate and make the most out of your relationships.

Ostomates and Intimate Relationships

Imagine you are in a relationship with a person and you want to take that relationship to the next  level by taking the step towards being physically intimate. You take off your shirt and you hear a  gasp. “What is that?” You look at your partner’s face and follow their gaze to your  torso and you realize something at that moment: you had never told your partner what it means to be an ostomate. Ostomates live with a part of an organ exposed outside of their body but  usually secured in an ostomy bag for the rest of their life. Although at first it is difficult to adapt to  this visible change, ostomates soon became comfortable and adapted to their routine well.  However, this new life for ostomates brings some changes to their personal life, especially to their  physical relationship with their partner. Both ostomates and their partners should take steps to understand about ostomy life and give each other the benefit of doubt to further improve their  relationship in a more intimate sense. 

An ostomate should prepare themself physically and mentally to discuss their condition with their  partner. This is important and necessary because post-surgery will bring a major change to their  body. Along with it, an ostomate may feel anxiety, fear and concern about their body. Ostomates have to express their fear and worry to their partners to alleviate their distress of this new  situation. An ostomate should understand that they can never ignore and hide their stoma from their partner forever. They should initiate small talks with their partner especially when they are ready  to engage in physical intimacy after surgery. They can talk about what happened with the surgery,  how the post-surgery life looks like, what is a stoma and how it looks like, ostomy pouch and what  it does and how they change it and so on. These small conversations will directly educate their  partner about what kind of changes an ostomate is going through and give them insights into what  being an ostomy means to their relationship. An ostomate can take the following steps in order to  engage in sexual life with their partner. 

• Take time and slowly expose the pouch and stoma to your partner. Your partner may show  reactions such as shocked, scared, or even curious. Or they may not show any reactions  as they are not sure on how to react to a stoma. They may not be sure on how to react  also. Don’t get angry or disappointed with their reaction or lack of reaction in some cases.  Most of the time, a partner will worry that they may hurt the stoma and dislodge the equipment during intercourse. Be patient and tell them how it does not affect your sexual life and how they can help you so it does not hurt during intercourse. Give your partner  more time to ensure they feel safe, secure and comfortable to be together with you. 

• Take care of your pouch. The type of pouch plays a role in ostomate sexual life. It  will be good if you wear a non-transparent pouch. Non-transparent pouch prevents your  partner from seeing the exposed stoma and the contents of your pouch. The reason is,  they might be scared to engage in sex when they see your stoma. So try a non-transparent pouch or alternatively you can buy or design your own “pouch covers”. Pouch covers can  become a fashion statement and it can make you feel good too. Additionally, ensure your pouch is empty before engaging in intercourse. This is crucial to ensure there is no leakage  or unpleasant smell during intercourse. You have to keep everything clean and neat  beforehand to make it comfortable for both yourself and your partner.

• Monitor your diet before engaging in sexual activities. See which food helps you and which  does not. A good diet can lead to an improved sexual relationship between you and your  partner. Avoid foods that create gas and odor especially beans, broccoli, corn, cabbage,  and peas. Experiment about which food causes bad reactions and gas to you and avoid  them or at least eat them sparingly. This will prevent your stoma pouch filling with gas. To  keep it safe, try to use a gas filter pouch as this will keep your pouch flat and deodorize the gas. 

An ostmate’s partner can also take several steps to ensure their relationship with their ostomate  partner is healthy and good. As ostomates, they might go through a difficult time adjusting and even fear rejection. So, as a partner, be patient and give them time. As an ostomate’s partner, you can follow  the following steps to have a better intimate relationship with them. 

• Don’t jump into a sexual relationship right after their surgery. You should remember that  ostomy is considered major surgery and your ostomate partner needs time to adjust to  their new normal. The surgery does not only put stoma outside but there is a high  possibility of bowel and fistula track removal for those who have Inflammatory Bowel  Disease (IBD). Your partner definitely need considerable amount of time to heal and gain  back strength following their surgery. 

• Be mindful of your reactions and try not to create any distance with them. Your ostomate  partner may feel rejected and feel lonely. Communication is the key solution in any issue.  If your partner does not initiate their post-surgery life, try to initiate that conversation  yourself. For instance, discuss with your partner about physical intimacy and experiment  with different positions so that they may not feel uncomfortable. Keep in mind that most stoma patients will not engage in intercourse for weeks or months after surgery. 

• Seek professional advice from sex consultants, Enterostomal Therapy (ET) nurses, or IBD  advocates to educate yourself about your partner's sexual issues. Generally,  professionals will provide solutions to improve on both you and your partners’ emotions  and also how to manage your sexual life. Professionals may not solve the core problem  for you but they will be able to provide suggestions, or solutions from their research and  work with other patients. They can also talk about your concerns, make you understand  your feelings better and give meaningful and constructive advice for you. 

Being intimate is highly possible for an ostomate and their partner if both take time with their new  situation and be supportive of each other.  Be positive and engage in activities that make you happy and healthy. When you find a new  partner, talk to them about your ostomate life and be open to answer questions honestly.  Communicating with each other about your needs, wants, concerns and fears can go a long way  in ensuring a healthy and meaningful life together.

Starting a Healthy Relationship with Food

By Erin Ard

What should I eat during a flare-up? What should I eat to stay trim? What should I eat to be healthy? What even CAN I eat? Every day I'm plagued with these questions. Even more aggravating, none of which have an easy, clear-cut answer. But having had experience fumbling over meal-planning and studying nutrition, I've learned how to better navigate my eating habits.

Planning and preparing healthy meals for yourself can be an exhausting, time-consuming, and sometimes expensive, process - especially for college students. Now if you throw in food allergies, intolerance, or chronic illness this process can get MORE complicated! Having inflammatory bowel disease (IBD), myself, I know how challenging it is to eat healthy within your own food restrictions; especially if you don't have a good understanding of nutrition, gastrointestinal disease, or what your restrictions are! My disease has been in remission for several years now, so my food limitations aren't as strict as someone having a flare-up, and I still have trouble. For those who are new to the game, IBD is a class of autoimmune diseases that causes inflammation along the GI tract when the disease is active, and can hinder nutrient absorption. With Crohn's disease, a common form of IBD, there is no specific diet to follow to control symptoms. This is probably the most annoying thing you've read today, but I better let you know now.. According to the Academy of Nutrition and Dietetics, we only know of foods to avoid - foods like dairy, high fiber grains, alcohol and certain spices, since these tend to aggravate an inflamed bowel.

Being the nutrition major I am, I get to learn about the Dietary Guidelines for Americans (DGAs). These are a great resource for curious readers wanting to eat healthy and live an active lifestyle. They lay out simple and easy recommendations to help prevent chronic illness, e.g. diabetes or obesity. These illnesses have become more and more prominent in the U.S. and have direct ties with diet. But what about the many other nutrition-related diseases with not-so straightforward ties? Unfortunately, the DGAs aren't designed for all bodies. The research used to develop the recommendations use “healthy” test subjects, of course, not those with chronic illness already. If you have a chronic illness, you’ll need to take extra care to find your ideal, health promoting diet. Better start doing some research yourself or see a registered dietitian! Or try out this idea you've probably never heard before, a food diary! …

Taking extra care in regards to your diet is especially important with IBD. In Crohn's disease specifically, inflammation along the digestive tract can cause nutrient deficiency. Inflammation hinders absorption of important nutrients, vitamins, and minerals; putting you at a higher risk of malnutrition than your healthy roommate. Eating the right nutrient-rich foods and eating enough of these foods can make-or-break living healthy with IBD. All of this in mind, the DGAs are still an easy “go-to” to help you learn about what makes up a balanced meal and why. In the rest of this article, I want to help you navigate the DGAs and share my own troubles with forming healthy eating habits.

Navigating the Dietary Guidelines for Americans with IBD

When comparing the DGAs and what is good or bad for a person with the common IBD form of Crohn’s disease, there are a few noteworthy similarities. For instance, limiting saturated or trans fats, simple or added sugars, sodium and alcohol are wise choices for everyone. They also seem to focus on getting a variety of vegetable and protein choices, emphasize fiber, and recommend lower fat options for dairy. Here you need to be careful. As noted before, certain sources of fiber can hurt a person with active disease. In other cases, fiber can be very beneficial for a person with Crohn’s to add fecal bulk, when the disease is in remission (i.e. under control or without symptoms). It's important for you to understand what foods are necessary for a well-balanced diet and what foods impact your disease management. The DGAs give a great outline, but your personal nutrition plan should have the final say in deciding what to make for dinner.

Dietary Guidelines for Americans 2015-2020

1. Follow a healthy eating pattern across the lifespan.

2. Focus on variety, nutrient density, and amount.

3. Limit calories from added sugars and saturated fats and reduce sodium intake.

4. Shift to healthier food and beverage choices.

5. Support healthy eating patterns for all.

My Relationship with Food

All of this information I have outlined is great and all, but I haven't touched on the emotional aspects of eating yet. Eating is heavily tied to the emotions I experience in a day. My mind bounces back and forth so much in a day when I think about food, eating, how I feel, how my gut feels, how much time I have before my next class, and whether I even have the energy to fix a meal up.

I eat when I’m sad and eat when I'm happy. I'll make a great meal to celebrate an accomplishment or make comfort food if my gut hurts. If I have an important event to attend, I will forego eating entirely to prevent symptoms. If I’m sad or stressed enough, I will also not eat, and wallow in my own pity. It’s confusing and raw, and I don’t understand my eating habits most of the time. Like I said, eating is a heavily influenced by my emotions, so how I feel about my Crohn's or about myself will impact what and if I eat anything. Unfortunately, I've discovered that a majority of emotions I experience will have me make bad decisions about food. But pausing to understand why I make these decisions and what fuels these emotions, has helped me to better understand myself. All of this aside, I love making food.

Striving for Progress

I used to have so many misconceptions about food. The biggest misconception I had to overcome was what I needed to eat to be healthy and what I should eat to look good. As a teen and throughout college, I was more absorbed in looking good, being thin, and keeping belly small. Not maximizing my nutrient intake by eating whole foods and managing my disease resurgence.

I used to be influenced by fads and testimonials - "stay away from dairy for clear skin", "stay away from breads and pasta and sugars to shrink your belly", etc. Everything affected me. Every headline I saw or piece of information I was told. Any advice I was given. Everything I interacted with tried to influence my thoughts, opinions, actions, and lifestyle. Here I thought I was being educated. I never realized I was depriving myself more than helping.

What I’ve been learning is that nutrition is not black and white. The world will try to convince you that there are foods you should not eat for X and foods you absolutely need for Y health benefits. Sadly, this isn’t true. There isn’t one perfect diet plan out there for everyone or for XYZ benefits. Nutrition is much more complicated than that.

With all of this in mind, I would say that right now, I have the healthiest relationship with food I've had in a long time. Studying nutrition was a major player, but I also must give credit to being mindful every day. Being mindful of my cravings and urges has helped me stay away from flare-triggering foods. And I make progress each day deconstructing any false beliefs on what I see as a "healthy" food for me.

My message to you is to educate yourself, learn about food, learn what foods you tolerate, and strive for a healthy relationship with food.