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.

What to Know When You Care About Someone With Crohn’s Disease

By Erin Ard

Chronic illness can be easy to ignore if you aren't the one living with it, but when you start to see how it affects a person you care for, it can strike a cord in you too.

When you meet someone with a chronic illness, it's natural to be curious about their life. You may even feel compelled to a) make their day easier, b) ease their pain, c) see their worth, or d) just help them feel comfortable. And if you want to lift the weight of living with a disease, choose all of the above.

Having IBD myself, it is THE. MOST. AMAZING. feeling in the world having someone who wants to know more and take care of you. So I must commend you for making it as far as reading this post.. You are ONE of FEW who would stick around someone with such a debilitating disease!

This topic has been on my mind for a while now. And when I started writing, I noticed how challenging it was to explain how this disease can affect someone. Experience with IBD is so diverse and can change so fast! For instance, in this moment I would say, "You really don't need to worry about me!" Because in reality, my own Crohn's has been in remission for years with only a few minor complications and I've made big strides in accepting my disease. I can go without thinking about my Crohn’s most days, but that doesn't mean these feelings of security have always existed and won't change in the future. Maybe your person is in the same boat, still it is invaluable to know what could happen. Whether you are a friend, family member, or lover, I want to help you understand the fundamental struggles, how it can affect someone (mainly by using myself as an example), and what you can do.

The first thing to know is that every person with the disease is unique and handles it differently. Some people want to be taken care of, while others may hide their struggles from you; so it's kind of up to you to know your person - I'm sorry I don't have all the answers! Thought, I can promise that anyone with a chronic health issue does not want to be characterized by their disease nor feel like a burden. It poses a challenge to balance helping them feel better and making the disease a big deal. If they choose to let you into that part of your life, that's great! It is too easy to discredit the harm it can impose. My first piece of advice is to have an open mind. Even though you won't be able to fully understand how it affects their body, mind, and lifestyle after reading this; you can keep learning.

 Before I jump into the nitty gritty of it all, we should go back to basics. Whether you just met someone with IBD, have know about the disease for years, or have it yourself it can be helpful to know how the disease works. With Inflammatory bowel disease (IBD), our immune systems get a little confused and end up attacking the healthy tissues causing inflammation along our digestive tract. IBD is a blanket term for the two most common forms: Crohn's disease and Ulcerative colitis. There are many commonalities between individuals who live with IBD. The most common symptoms are abdominal pain, fatigue, fever, and the infamous diarrhea. IBD can be classified from mild to severe depending on symptoms, e.g. frequency of diarrhea, abdominal pain, fever, weight loss, anemia, bowel obstruction, and more! IBD itself does not limit your life expectancy, however, it can lead to some life-threatening complications. And symptoms can be kept under control with medication, thankfully, allowing people to live normal lives whilst their disease is in remission.

The day-by-day symptoms and risk for complication in combination can be very draining for someone, both physically and mentally. Not only are these symptoms tiresome in their own right, but can bring about mixed feelings - fear of flare-up recurrence or inability to find a bathroom, worry over not knowing what you can or can't eat, embarrassment of symptoms, and maybe denial of the pervasive hold it can take on your life. Even though my disease is in remission, it takes constant maintenance to feel in control of my body's health.

Much of my knowledge comes from learning about my own Crohn's symptoms and how it has impacted my day-to-day life. So I will try to describe what to look out for when caring for your person and their IBD.

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It's a daily struggle.

IBD is a hidden illness, making it hard to understand what kind of struggles we endure because they can't be seen. If your loved one says they don't feel okay but look fine, trust them. They know their bodies better than anyone. I know for myself, every once in awhile I have shooting abdominal pains, discomfort from something I've eaten, unreliable energy levels due to fatigue, joint pain, sensitivity to temperature, and recurrent symptoms close to my Remicade infusions. Usually on bad days, I take it easy on food I prepare for myself and the activities I do.

Tip: Have patience and learn to enjoy a few more Netflix movie marathon nights than usual.

It's a love and hate relationship with food.

With Crohn's we have our own food triggers, which can be devastating to our digestive systems and send us running to the bathroom. Unfortunately for us, there is NO SINGLE ALL CURING DIET PLAN that can help us. We really just have to figure it out on our own since triggers differ from person to person. I get a lot of questions like, "Can you eat this?" "Or what can you eat?" and the answer isn't very simple. I can eat just about anything I want most days, but if I'm feeling off or it's getting close to my next infusion appointment - I take it easy on the hard to digest foods. I try to eat as healthy and balanced as I can while still getting the same sense of satisfactory indulgence as anyone else. For instance, I would love to eat an entire pan of brownies (and have gotten close a few times) but this would lead to me feeling like sh** the next day; as it would with anyone I feel. If you switch this desire I hold for brownies during a flare-up, it gets a bit more complicated and pretty much impossible. During a flare-up, however, my indulgences subside and I only crave foods that will sustain me without bringing about more harm.

Tip: Expect a mix of eating habits, since our health can change pretty fast. If they are on a strict diet plan, say gluten-free for someone with Celiac or gluten intolerance, get to know what they can and can't eat! It will be a whole lot easier for them if you have a good understanding and they can stop answering the "What can you eat?" question, at least coming from you :). A lot of people also take supplements to make up for the nutrients lost in their diet or from not being able to absorb an efficient amount through the gut. The biggest thing to understand, like with me, is that there are foods we just can’t eat AND there are foods, though you wouldn’t think so, we are still able to indulge in!

Flare-ups are hard to overcome.

When the disease is active, you'll see all of the main physical symptoms taking root. A flare-up can last several days to a few years and can limit our ability to perform daily activities; sometimes even landing people in the hospital. During my own flare-ups, my limitations were somewhat subtle. I was still able to attend school and join sports, but my performance level was not where it could have been (this became clear once I achieved remission). After school I would too often fall onto the couch, exhausted from the day. I didn't have a solid bowel movement for months. I would give up and have emotional break downs in the bathroom. I became afraid of food because my body couldn't digest it properly anymore. I missed a lot of school, plans with friends, and family get-togethers. What I did attend, I would be withdrawn, wanting to lay down or be at home. Flare-ups are very socially isolating and can force us to miss out on a lot of what makes life fun :(

Tip: Be your own person and don't feel like you need to spend every occasion we miss out on with us, because we don't want you to miss out either! If your person is not feeling 100% and tries to dip out on plans, be heartfelt and ask, "Are you sure? What is making you not want to go?" Reassure us that not every day will be a bad one. Sometimes we have to stick it out to reach the good moments. In time, when we are healthy again, we will be able to push through what limits us. And help us see the value of little things, even if it's just an evening of Cards Against Humanity  or binging The Office.

We have some tricky immune systems.

Many of us take medication to suppress our immune systems to fight inflammation. Some people may get sick more or less often, depending on their medication. When I first started Remicade, it was rare to find me sick with the common cold. However, since my dosage was increased I seem to get sick more often and have a harder time fighting the sickness off. *Insert disappointed emoji *

Tip: Help us take precautions when going out - use hand sanitizer, disinfect grocery carts, and mind your sneezes. Especially during cold and flu season! Maybe consider bringing over a box of tissues and some chicken noodle soup when these efforts fail :)

Everyone has their own self-esteem issues and insecurities.

IBD makes us feel a loss of control over our bodies (quite literally sometimes) and can indirectly cause visible changes (e.g. weight fluctuations, inflammation of the skin or eyes, mouth sores, etc.). Complications with IBD may involve j-pouch construction surgery - a major cosmetic change with added stress over maintenance and potential leakage - or bowel resections and scarring. This can also extend to social interactions, like when we have to explain why we can't eat certain foods, obsess over the details with travel plans, or being conscious of our frequent bathroom visits.

Tip: Depending on the person, procedures causing cosmetic changes may not sit very well. All that we ask is you be open and accepting of every scar or medical device. Each one tells a story of our struggles and what we had to face to find strength again.

IBD has it's own added mental health challenges.

People with IBD are at higher risk of having anxiety or depression. It is all too easy to get down on yourself when you deal with constant set-backs. With IBD, a lot of the symptoms happen behind closed doors.. Usually bathroom doors. Or in the scope of mental health, you can envision the mental wall that keeps others from seeing your thoughts, feelings, and worries.

Tip: I implore you to keep an open mind. We might need a little extra encouragement when it comes to self-worth, seeing the positive, and enjoying life when our IBD gets in the way.

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Being available and accepting of what we deal with can make such a difference to us. Like I said before, IBD can be socially isolating and I hope this post has helped you to understand why that is. I also want to say that people with Crohn’s or Ulcerative Colitis are the strongest, most ambitious people I know. They deal with keeping their health in check while juggling school, work, friends and family, their goals, AND everything else!

Your person may or may not deal with what I've laid out. Honestly, there is way more that could be discussed on "taking care of someone with Crohn’s" than what I know. Getting to know your person with their Crohn’s lifestyle will have a learning curve. It’s going to take some time and a considerable amount of observational skills to become an expert and if you aren't sure, ask! Just know that you can't do everything for us. You can't take all the pain away or make us healthy. What you can do is keep an open and accepting mind around our abilities. Be patient with our limitations. Help us feel comfortable and emotionally supported when we miss out. And get to know our many qualities in addition to being fighters. To go even further, I respect someone willing to challenge me when I hesitate on getting out of my comfort zone.

Finally, remember to take care of yourself too. Not only can the symptoms be draining on the person with Crohn’s, but seeing your loved one endure such bodily torment could drain you as well. Take time to rest, focus on the good, and keep fighting for your person!

What advice would you give to your loved ones?

Comfort, Charisma, and Confidence: 3 Tips to Make Dating with IBD Work For You

By Erin Ard

Recently, I've been learning about the many strong women who have made a difference in this world. Those who have lead movements, progressed research, fought their adversity, spoke their truth, and lived their life with passion. In honor of #WomensHistoryMonth, I've been trying to find what this means for me. A single, white, cisgender woman with a voice, a mild physical disability, and a latent identity. What do I have to say?

I've been doing a lot of reflecting lately about what I can offer the #IBD community. I've been trying to think of what tips and/or tricks I live by that could make your day to day life easier. I explored my reflections but I sadly couldn't come up with many. Then I was kindly reminded of something. Though I have lived this fight with Crohn's for some time, I am still amidst my own journey. I might not have the answers because I haven't resided long enough in this level of comfort, which seems to grow every day. I am still figuring out how to catch up from the emotional setbacks Crohn's disease has caused for me and it's okay if you are too. Welcome friend! We can figure this out together.

In truth, I have had a lot of interesting experiences I could speak to, but today I will settle on one I've learned a lot about lately. #Dating.

While this topic might not be central to the life of an IBD patient, it has the potential to really impact our self-esteem and mess with our emotions. I can't say I have extensive experience with dating or have ever made it to the "sweet spot" (when you get past the "What are we?" stage and finally make it official). However, since I've been out of the game I've been using time to learn. I've subscribed to a few newsletters and watched way to many "How To" videos! How to get the man of your dreams, How to not push him away, How to get him back, How to.. How to.. It sounds silly, but it has been SO eye-opening! What was a topic I had zero input in, I now have a LOT to say about.

It's a little humorous how much we struggle over the little things in dating that should be easy. For instance, figuring out how to say the right things or act a certain way to keep someone's interest. I've realized the less we worry about these trivial things, the more successful we could be. You might be thinking, worrying "less" is easier said than done, but shouldn't being our natural selves rather than putting on a façade be the easy part?

This is just one of the many revelations I've had recently about how intuitive the dating world is and how easy we can make it work in our favor. As a woman with Crohn's disease I've had other challenges to contemplate, like how to talk about having a chronic disease to someone I barely know and how to phrase positively so I don't look like damaged goods. Because in reality, we have all learned tremendous strength with having IBD so there is no need for anyone to think this about us.

IBD is a multi-facetted disease that touches many parts of our life. It impairs some of our basic every day functioning, like being able to sit for extended periods of time without needing to use the bathroom. Personally, Crohn's disease has transformed how I go about my day. I've had to make necessary changes for my health, learn to accept my limitations as they are, or find the motivation and means to push past them.

Well, here it is my little ladybugs! Here is what I have learned about dating AND dating with IBD.

First, open up about your IBD when you feel comfortable.

Opening up about your life with IBD can get pretty personal and you might not want to get too personal too quickly. If your date asks you questions about having IBD, be honest, but don't feel pressured to divulge all your deep emotional baggage. Ultimately, deciding when you should talk about life with IBD is up to your comfort level. If you are comfortable with someone and trust their compassion, then feel free! Getting close to someone emotionally is all about balancing each other's efforts. If they give a little, you give a little and vice versa.

Opening up about your life with IBD is different for everyone. Some people are entirely comfortable with airing out their experiences, while others may be hesitant. Some people dwell on the negative, while others would rather focus on positive. It may be easier for others, but we don't need to criticize ourselves for how behind we may feel. Rather we should accept where we are, honor how far we've come, and progress at our own pace.

Second, cancelling a date doesn't have to be a headache if you are charismatic.

Dating is stressful enough and when you add IBD into the mix it can get complicated.

Imagine this: You met someone who seems perfect! They are family-oriented, charming, sensitive, and cute. You are really excited about getting to know them so you set up a date. You talked them into touring the art museum downtown and getting ice cream afterwards. But, you wake up the morning of feeling a little off. Maybe that handful of popcorn at the movies last night wasn't the best idea.. You forgot how much popcorn can set you back and you've been reaping the consequences all morning. So, what do you do?

When you have IBD, situations like this can happen often. This has happened to me quite a few times since I always forget how much my body loathes popcorn. Although my dates were never this adorable!

So, say your date doesn't understand your situation and you aren't comfortable with sharing that part of you yet. If the person is as great as you make them out to be, then they will understand if you need to cancel. Even so, there are ways to cancel a date that won't reflect poorly on your interest. Here is my personal tip, whether you decide to tell them the truth minus the details (you aren't feeling well) or make up a believable excuse (you have an assignment to finish), be cute about it! Tell them you won't be able to do tonight and add something playful, like Hey, I don't think I can meet tonight anymore. Any way we can reschedule for Thursday? I promise I'll make it up to you ;)

This way you still convey interest, make the cancellation pleasant, and give them something to look forward to - seeing your cute self :) If you have to cancel many times, it probably won't continue to work in your favor. You have to figure out what you want to tell the person. If they don't respect that some actions are difficult for you, then they probably weren't the one for you anyways. You deserve someone AS amazing and understanding as you.

Third, it's all about being confident.

If you think about it, what kind of personalities are YOU attracted to? Those who seek out gratification for their insecurities or individuals who are comfortable with themselves and radiate positivity?

Here is my personal tip on getting started with confidence. Practice talking about how IBD affects you. Have this conversation with yourself, open up, be honest and focus on what value it has brought to your life. For me, having Crohn's has brought me closer to my family and friends, it has taught me strength and perseverance, and has given me a purpose. Since being diagnosed I have focused on my overall health and sought out knowledge to help others be healthy and embrace their whole self.

The notion of confidence became more inviting for me once I realized it can be learned. Being confident is an attitude and it is relatively easy to implement if you are proactive in changing your mindset.

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I hope this article can help shift your perspective of dating with IBD to a positive headspace. If you take one thing away from this, I want you to know the key to successful dating is knowing and appreciating yourself. Once you learn how to do this, all of the tedious details we tend to wrap ourselves in won't seem as unmanageable. I can't say enough about how the simple act of being compassionate with myself has helped me grow. I hope to become as strong as the women I've been learning about this month and to pass this strength to all of you.

Each of us is strong in our own way. IBD challenges us to be even stronger.

With love,

Erin