I’m just gonna say it – Crohn’s Disease is HARD!
Plus on top of your regular symptoms, the medications can cause so much extra craziness to deal with, it can feel like an extra disease by itself (hands up anyone who has ever been prescribed Prednisone)!
With so much up in the air, it can be easy to feel like your whole world is spinning out of control. The effects of the disease can take such a huge toll on our bodies, both physically and emotionally, and over time, that strain can become hard to deal with. You might ask yourself “How can I take control of a disease that does so well at controlling me?”
Now believe me, I’m no pro at this. I find myself asking this question a lot more than I’d like. Since the day my diagnosis sent my world spinning out of orbit, I have found that the best thing I can do to help find my center is finding elements of my life that I still can control. For example, I may not have much control over what I’m allowed to eat, but I’m learning to make the foods I CAN have more fun. I can’t control what my body does or will do in the future, but I CAN try my best to control my ability to look for the good things I do have in my life.
Searching for Answers: The “Google Phase”
I had never heard of Crohn’s Disease when my IBD journey first began. One day I was fine, and the next I was in the Emergency Room. The doctors weren’t able to find out what was going on for more than 2 months. I’d had so many X-Rays during that period that they no longer offer me the option of having one unless it’s an emergency.
After my second emergency room visit, my doctors finally realized this was much more than just a ‘stomach bug’ and so the beginning of what would become a continuous stream of tests began. I spent most of my time on the couch flat on my back with a bowl next to me, afraid to move for fear I would throw up. Trust me…this gets old fast! Anyone else know the feeling??
I was desperate for answers so I dived in and started searching online for a possible answer that would make the misery stop.
To the lab! (aka Google!)
During one of these early Google searches, I came across some information on Crohn’s Disease. I vividly remember thinking to myself that a lot of the symptoms sounded similar to what I was dealing with. A little TOO similar…but there was NO WAY that I could ever have something as HORRIBLE as that sounded! I was petrified at the idea of having something that would never go away. I wanted a quick and easy fix. Pop another pill. Have something removed and have to deal with a scar at the worst. At that point, my doctors were testing my gall bladder, and I’d had a whole lot of people tell me all I’d need was a surgery and I’d be fine. So I satisfied myself with the idea that all would be well and clicked to a different page as quickly as I could. Whenever I think of that moment, I have a Finding Nemo ‘DENIAL’ flashback! This video clip might help give y’all a good visual…just for fun 😉
Finally, on my 3rd ER visit, they did a CT scan with contrast dye and realized my intestine had completely closed off and I wouldn’t be leaving the hospital for a while. I was totally freaked out, but equally relieved that I was FINALLY getting some answers that might make the pain and debilitating nausea stop. Even now, when remission is nowhere in sight, I feel like I experience more stress with the unknown.
A Tough Diagnosis
Dealing with a hard diagnosis, especially one that could be potentially life threatening, can be really scary. Receiving news like this can be incredibly overwhelming to take in. If you have received a new diagnosis or are dealing with any new changes in your current health situation, you might be feeling a whole roller coaster range of emotions right now. It’s common to feel anger, guilt, denial, grief, embarrassment, regret, anxiety, and even depression. In fact, the Canadian Society of Intestinal Research found that IBD patients were at least twice as likely to have experienced a depressive disorder at some point in their life. While this crazy emotional roller coaster ride is completely normal to experience, it’s so important to learn healthy coping strategies to stay in control and prevent eventually letting the effects of your disease control you. This so SO much easier said than done, so definitely take it easy on yourself and don’t expect yourself to just ‘get over it’. We don’t just ‘get over’ something like this. The healing of your mind and heart during such a major life change is a process. Learning to find the strength to cope day in and day out can take a lot of patience and time, evaluating and reevaluating.
When the doctors finally realized on my 3rd ER visit that I had been having intestinal obstructions and admitted me to the hospital for emergency surgery, I was horrified to hear that Crohn’s Disease was even being considered as a possibility. I woke up from my first colonoscopy in dread of what I would hear, and felt the full force of the blow when they told me what I had. I knew the basics of what that meant and the more I learned over the coming weeks, the more my heart broke at the thought of having to live with this burden my entire life. During my first follow up appointment, we discussed my treatment options and my grief was brought to a brand new height when I heard the possible side effects of my medication, including cancer (say WHAT?!). I was told some people can manage their symptoms with diet alone, but mine was such a severe case, that wouldn’t be an option for me. I had to sign liability waivers and learn how to give myself injections for my first round of treatments. I left more than one doctor appointment in tears.
It was during those first few months that I became so overwhelmed that I realized I couldn’t take living with such a huge weight dragging me down. I couldn’t handle being so miserable for the rest of my life. I didn’t like the idea of just having to deal, and I couldn’t force myself to be happy about the situation. I knew I needed to do something, anything to make life happier and more fulfilling for me. I knew there was no magic answer to make it all go away, but it was at that point I realized that it was ok that it was hard. It was ok that I didn’t know what would happen next. I realized that I still had the ability to make my life what I wanted, no matter what was going on with my body. I began thinking of some things I could do to make every single day more than just a day I just had to get to the end of. More than just an endless string of sick and miserable. I decided to learn to focus on what I could do and turn the blah, horrible, and hard into FUN and HAPPY. That decision has made all the difference for me in learning to live with Crohn’s disease. It took a long while, and I still experience so many ups and downs along with my disease, but the decision to count my blessings and try my best to not only see the good, but to MAKE life good has been the push I’ve needed to pick myself up and keep going every time I experience the bumps, bruises, and complete crashes along the way.
Guilt: What I Can’t Do
Now…Let’s talk about those bumps and bruises and crashes for a sec.
I get asked all the time how I can stay so positive about this. The truth? I’m not. Learning to cope with Crohn’s Disease is more than making up your mind you’re not going to let it lick you. It takes guts (no pun intended). It takes resilience and determination to even get out of bed some days. It takes forcing yourself to be brave even when you don’t want to be. It’s the moments when you have to force yourself to think about something happy, or funny, or even the slightest bit distracting when you give yourself another painful injection, or force down another gross powdery pill or prep drink when you already want to throw up, or having to endure nurses struggling to put in your IV.
One of the hardest parts for me to deal with was learning how to accept that there were things I could no longer do. It’s a lot easier to ignore the piling dishes or call in sick for just one day when you can’t roll over without a bowl next to you. But what about all the days after that? Since Crohn’s Disease is ongoing, that literally means the symptoms are ongoing. We don’t just ‘get better’ over time or because we took our medicine. We have our good days and awful days where we literally can’t get out of bed, and all the days in between. Those days pile up, but those dishes have to get done eventually. The grocery shopping has to get done sometime. At some point we’re going to have to change our clothes. The bills have to get paid somehow. We’re still parents, spouses, sisters, daughters, best friends, neighbors, employees, etc. We all had responsibilities before Crohn’s Disease surprised us and we still feel the impending doom of what will happen if we don’t fulfill them. How can we let just let these things go?
There’s really no easy answer to this question. This convo really isn’t to give an answer, merely to address that feeling like we have to be Super Woman is something that is felt by every one of us. My dishes and laundry piles are still sky high some days, and I virtually live in yoga pants, leggings, and pj pants. The only advice I can give to anyone struggling to keep up with life is just to take one day at a time, one task at a time. Learn to prioritize and find short cuts, when needed. Find a grocery store who accepts online orders, find some cute AND comfier clothes to wear to work, make yourself a cleaning schedule but be ok if you need to make some adjustments. Give yourself a day off once in a while to take a breather and focus on you. Talk to your boss and make sure they understand the reality of what you’re dealing with. Don’t beat yourself up if you can’t make it to the next big event because you need extra sleep. As much as we want to be there for everyone and everything, it’s unhealthy to expect yourself to be. Listen to your body and only do what you can. Pushing yourself farther than you have the strength will just make things worse in the long run. Remember, it’s a marathon, not a sprint.
And of course, if you’re stuck in a bind, remember that it’s ok to ask for help. It’s not easy to do, but it is ok.
An Irritable Bowel Disease by nature generally implies a lot of time in what would socially be considered an embarrassing situation. I mean, really, bathroom time doesn’t usually translate into much of a social activity. In fact, having a ‘bathroom disease’ can be embarrassing and may lead us to start avoiding social activities. It’s generally easier to just stay home than to put ourselves in a potentially embarrassing situation or even to avoid feeling left out, separate, or different from the group.
When my IBD journey first began, I was overwhelmed and desperate to talk to other people who were going through the same thing I was. Someone who knew the struggles that comes from dealing with an ‘invisible illness’. It was during that time I connected with a good friend from high school who also had Crohn’s Disease. She knew how I felt and she helped me through one of the hardest times of my life simply by being there to talk and answer my questions. She’d check up on me and ask me how I was. She knew what it was like to endure a colonoscopy prep, celebrate when the nurse gets your IV in on the first try, or laugh/cry/vent about the ‘chipmunk cheeks’ that come with a corticosteroid called Prednisone.
I remember telling her how much I wanted to feel normal again. She told me I’d probably never be ‘normal’ again but that there was no reason I couldn’t live a happy, healthy life. I was SO not thrilled to hear that…I wanted her to tell me I’d only have to deal with it a little longer and my medicine would soon make everything would go away, but unfortunately that’s not the reality of Crohn’s Disease. The reality is having to take each day one step at a time. It’s in the pills, the pain, the tears, the rolls and rolls of toilet paper, the needles, the doctor visits, the bills, the food you have to eat to survive. It’s in the way you bravely take those hard steps, and how you learn just what you’re made of. Learning how to live that ‘happy, healthy life’ is definitely not easy, and the feeling ‘healthy’ may be more of a struggle some days, but the happiness can be there. It can come, if you let it in, no matter the state of your disease.
Two years have passed since then, and I can’t believe how far I’ve come. I’m nowhere near remission, or even having my disease under control, and I still have to avoid eye contact when anyone asks me how I am so they won’t see my eyes tear up, but I now finally feel like faith conquers my fear of what lies ahead for me.
Let’s give a little shout out to our caregivers! If you were to ask my husband if taking care of me during my worst days is a piece of cake, he’d say nooooo way! The introduction of Crohn’s Disease in our family took some major household and financial adjustments. He’s had to help out a lot more around the house with the cleaning when I’m having trouble bending over, the cooking when I can’t get off of my back or out of the bathroom, and has had to learn to bump his sensitivity levels up about 20 notches to try to understand what I might be going through that day to try to figure out how he can help.
During that first week home from the hospital, I had a major meltdown. I cried and told him how much I didn’t want to live with this. He didn’t know how to help me, and if I were to flip the situation around, I wouldn’t know how to respond to something like that either. I told him I knew he couldn’t fix it, I just needed him to be there for me and listen. He’s had to deal with the financial stress of my medical bills and even take on an extra job to help replace the full-time job I had to leave to try to manage my illness. Sometimes it can be hard to get out of my own head and remember how much stress this has brought on him as well, but even with all the ups and downs, the experience has brought us even closer as a couple because we have chosen to take on my disease as a team. He knows to ‘just smile and nod’ when I’m dealing with mood swings, he knows to tell me to lay down when he can see that I’m pushing myself too hard, and he can see when I just need a hug. When he’s feeling stressed, I’ll bring home one of his favorite foods, even when I can’t eat it. Even something as simple as letting him pick the movie that night can go a long way.
My biggest piece of advice to any caregiver who has a loved one with Crohn’s Disease is to do just that – be there for them and listen when they need to talk. It’s ok that you can’t make it go away. Let your loved one know they can depend on you to help them to deal with the reality of their illness. A study by the American Psychological Association found that those who actively sought out social support and used active coping strategies — such as developing a plan of action — reported more inner peace and satisfaction with life two years later, compared to women who tended to deny or avoid their diagnosis.
Help your loved one to remember what it is you love about them so they know they can feel secure in their relationships despite the changes in their body. Validate and respect what they’re feeling, and remember it’s totally ok to not understand the full extent of what they’re feeling. Always, always try to remember there may be many symptoms of their illness you just can’t see. Don’t just go for the obvious, the situation may be much worse than what you can see on the outside. It’s hard to put yourself in each other’s shoes and see the situation from their eyes, but the ability to try to understand what the other person is dealing with can be huge when dealing with the new stresses IBD brings to your relationship.
One Day at a Time
I wish I could say that the diagnosis and early treatments are the only hard things we deal with. (Are you catching the drift that this never goes away??) We ‘lucky’ ones who deal with the joys of this on a regular basis learn to appreciate the good moments. We might miss ‘the good ol’ days’ when we may have taken feeling good for granted. As hard as it is to not look back, in order to save our sanity, we should always be trying our best to keep looking forward. The road to emotional healing is long and hard. Enduring chronic illnesses are definitely not easy, but the important part is to learn to love who we are inside. Regardless of what is going on with our bodies, we need to remember that our disease does not define who we are. We have hobbies, interests, and a deep value to the world. It can feel so hard to feel like ‘you’ when you’re struggling to deal with a disease that has so many affects on your body. I’m definitely no expert at this – trust me, I still have my hard days – but looking back on the past two years, I’ve realized that one day at a time, I’ve learned to find a new strength in myself that I didn’t know I had before. I’ve learned I can do hard things. I’ve learned that I can be brave. I’ve learned that I can overcome challenges. I’ve learned empathy. I’m not always perfect at it, but instead of being overwhelmed by looking into an unknown future, I try to look forward with faith and hope, no matter what my symptoms are. If you find yourself floundering, take a step back and reevaluate. Focus on what matters most to you. Focus on what you can control and take life one day at a time. And girl, don’t beat yourself up if you feel like you don’t have it all together! This is NORMAL! We all have our good days, our bad days, and all of those days in between where we’re just not sure we can take any more. Take some time for yourself to recenter and gather the strength you need to pick yourself up again and keep going.
My hope for all of us is that we can learn to find purpose by seeking out the good in life and make it an even happier one. I’d LOVE to hear your stories and tips for dealing with the stressors of IBD! We’re all in this together right 🙂
*Note: I am not a mental health professional. These thoughts are recorded from my own experiences. IBD is a extremely personal and individual disease. If you have any questions about your own physical or mental health, please consult your doctor.