Cooking With Colitis: Chicken Noodle Soup

Winter got you down? Watch as Rachael, one of our 2020 fellows, walks you through this soup that's great for cold weather or when you're not feeling 100%. Recipe is posted below and, as always, feel free to change to meet your dietary needs. Don't forget to check us out on our other social media platforms!

The recipe for this yummy meal can be found here:

Extra tips!

• If you have homemade stock or bone broth, that would be a great and nutritious addition. 

• I like to add several handfuls of baby spinach at the end to get some extra greens in there. 

• If you want to make it veg, use veggie stock and omit the chicken. Add any extra veggies you like - greens, white beans, canned tomatoes, etc. 

• Based on your dietary needs, change the recipe as much as you need! The onions, celery, carrots, garlic and oil are a good base for a lot of different soups - the world is your oyster with this recipe. :)

Recipe - 

Ingredients: 

• 1 medium white/yellow onion, chopped 

• 2-3 carrots, chopped

• 3-4 stalks celery, chopped 

• 1 Tbsp each of butter, olive oil - use either or based on dietary needs/preference!

• Pinches of dried thyme, oregano, basil, parsley (or to taste)

• 1-2 bay leaves 

• 2-3 cloves garlic, minced or ~1 tsp garlic powder

• Salt & pepper to taste

• 2 quarts of chicken stock (or homemade if you have it)

• Shredded rotisserie chicken (one small should be plenty)

• Slightly undercooked large egg noodles - use as much as you like, but usually ⅓ to ½ a bag 

Directions: 

1. Heat butter/olive oil at medium heat until hot, then add onion, celery and carrots. 

2. Cook, stirring occasionally until onions and celery start to cook down and become translucent, about 10-15 min or as needed. Add thyme, oregano, garlic (or garlic powder), bay leaves, salt and pepper. 

3. Cook a few minutes more, until everything smells  extra delicious, and add ~1 cup of chicken stock (at least enough to cover the veggies). Bring to  simmer.

4. Bring pot of salted water to boil to cook the egg noodles.  Make sure you underook them a bit by 1-2 min since they will finish cooking in the soup. Rinse/drain. 

5. Add egg noodles to soup mixture and simmer for 10 min. Add shredded chicken, turn heat to low,  and cook for ~5 more minutes or until heated through. 

6. Taste, season more as needed  and remove bay leaves. Congrats, you’re all done. :)

The Pathway to Body Acceptance as a Chronically Ill Person

By Amy Weider

When I was in fourth grade, I was going through the symptoms of my upcoming Crohn’s diagnosis. I was young and did not understand or have the language to explain the pain my body was feeling. While Crohn’s and IBD are invisible illnesses, i.e. one does not look “sick” to a normal passer byer, my constant puking and diarrhea made me lose a significant amount of weight. As a 4th grader this was a bit alarming to my folks, but the general reaction made by my peers and adults around me was to comment on my weight loss and uplift me for it. “You look so much better now” I remember this statement so vividly from a boy in my fourth grade class. “It’s super cool that you finally decided to lose some weight,” someone said to my ten year old body. I was ecstatic to hear this. When you are growing up Femme in a world that encourages you to hate your body and only allows you to idolize those who occupy an able body that wears a size two, it is fitting that this weight loss seemed like a success to me as opposed to a signal that I was chronically ill. I could not differentiate between healthy and skinny, they meant the same to me.

“I could not differentiate between healthy and skinny, they meant the same to me.”

I internalized so many of these comments and the general societal note that any extra amount of weight made me less than. When I was put on prednisone it induced me to gain all the weight back plus more and get “moon face” as well as stunt my growth. As a formally skinny person, I was embarrassed to have this body and it forced me to endure much body dysmorphia because of the quick changes. My mind didn't understand how this was supposedly a healthier version of myself.

When I think back to this time in my life I want to give my ten year old self a big hug. Healing with the body that I inhabit is treating it with the love and respect that I so desperately needed when I was actively a sick young person. My body size continues to change today even in remission. Body dysmorphia and trauma still occupy much of my life. When I was a size two I remember constantly thinking I was fat, now a size ten I do all I can to waste no more days worrying about my size. Acknowledging sizeism and fatphobia allows me to deconstruct and actively tear down these underlooked systems of oppression that taught me to hate myself and other bodies. Today, I know that my body does not even have to be healthy, skinny or pretty for me to love it. I love the way my body takes up space. I accept that my body is sick while simultaneously being an amazing vessel that holds all my thoughts and dreams. Learning radical self love was revolutionary for me and so many others.

“Today, I know that my body does not even have to be healthy, skinny or pretty for me to love it. I love the way my body takes up space.”

People gain and lose weight for SO MANY different reasons, folks with chronic illnesses deal with a fluctuation of weight due to their medicine, hospital visits or general “sick” stress. Even deeper, any kind of body trauma can induce weight loss or gain. Sure, if you are blindly assuming someone is unhealthy because of their weight, it allows you to think very highly of yourself but when we comment on one specific part of the body not the whole person, their whole experience and all the symptoms, your comments are worthless. In general, commenting on other folks’ bodies is a baseless way to assert a dominance on others.

All bodies deserve love! The body positive movement is currently challenging the notion that one specific body is healthy and beautiful and all the other ones must conform. Folks like LIZZO, Megan Jayne Crabbe (@bodyposipanda), Iskra Lawrence, Sonya Renee Taylor (The Body Is Not An Apology) are pushing back everyday by freely and openly loving themselves as a political agenda and are encouraging others to do so as well. Folks with chronic illnesses and disabilities are at the center of this movement and are helping bring nuance and love to it.

“Everyone poops.”

By Samantha Rzany

“Living with an invisible illness is hard. But every time I share my story, the illness becomes a little less invisible to those who take the time to listen.”

As Taro Gomi best said, “Everyone poops”. From a very young age, we became aware that, indeed, everyone does poop. But when I was little, I don’t think I could have imagined just how much I would poop…

I just passed my one year since being diagnosed with Ulcerative Colitis. After a year and a half of countless doctor’s appointments with no real results, I finally had an answer. I had my first colonoscopy the day before finals during my first semester of my senior year of college. The prep was anything but fun, but I went into the procedure not expecting anything to come of it, as had happened so many times before. After the scope, the doctor came into the room. I remember being pretty out of it from the anesthesia. She spent all of five minutes in the room with us, throwing out words like “ulcers”, “irritated”, and “diagnosis”. She told me I had ulcerative colitis, that I needed to schedule a follow up appointment with my regular GI, and that she’d write a script for some suppositories and enemas. At the time, I had no idea what those even were. Little did I know how familiar I’d become with them.

I smiled and nodded, certain that it was a “drink some water, reduce stress, and take some of this medicine” kind of thing - like the gut version of “ice and Advil”. I left the hospital sure that it was another diagnosis thrown around when they’re not really sure what was wrong. Then people started asking how I felt about my new diagnosis. I didn’t know anything about ulcerative colitis. Doctors threw around different diagnoses for the last year and a half of testing, and none of it really meant much. I assumed this was the same.

After a quick Google search in the car ride back to my dorm, I realized that ulcerative colitis was no “quick fix” kind of disease. It was chronic. And there was no cure.

A few weeks later, I had my follow-up appointment with my regular GI. She discussed my treatment plan, explaining that for now I was going to be on topical treatments – the suppositories and enemas – but that there were more aggressive treatments out there. She mentioned steroids and immunosuppressant drugs. She said that she never expected me to even need immunosuppressant medications, so there was no need to do the blood tests required to see if they would be safe for me. I went home feeling much more at peace with the diagnosis – I mean I could handle a few suppositories and enemas twice a day, right?

Over the next two months, I started to get sicker and sicker. I could hardly eat without extreme pain and very frequent bathroom visits. I was eating rice for every meal, since it was all I could tolerate. I eventually started eating baby food too because it was easy on my stomach and gave me the nutrients I needed.

Two ER visits in a span of 3 weeks later, the ER doctor prescribed me Prednisone. We in the IBD community lovingly call this the “Devil’s TicTacs”. The doctor told me he didn’t expect me to be on it for more than two or three weeks – just long enough to treat my flare up. He said I may gain 5 pounds or so, but that they’d fall right back off.

“I eventually started eating baby food too because it was easy on my stomach and gave me the nutrients I needed.”

The next three months were some of the hardest in my life. I was so sick. I was in the ER every couple weeks to get fluids and nutrients that I couldn’t retain on my own. I was having bad side effects from the Prednisone, but it wasn’t making things any better. I was also trying to finish up my last semester of college. Only because of my incredibly understanding and accommodating professors was I able to graduate a year early at the end of April with a degree in Psychology and Leadership.

I switched to a GI through the University of Chicago back home. He said I needed to start receiving immunosuppressant infusions, since I had failed each of the previous medications. We had tried so many times to wean me off the Prednisone and supplement with other oral mediations, and nothing was working.

A few days before I was scheduled to receive my first infusion of Entyvio (the immunosuppressant I chose), I was getting very sick. I spent four days in the hospital receiving high dose IV steroids and lots of nutrients and fluids. I was discharged from the hospital and went straight to the infusion center.

Within 6 weeks, I could tell a huge difference in my health. I was actually getting better. After 5 months and 47 pounds later (guess the ER doc was a little off on that one), I was finally able to get off of Prednisone. In August, I was declared to be in remission.

Since then, I have continued to stay in remission. We increased my infusions to every 6 weeks and I still have symptoms sometimes, but I am so grateful to be doing well.

I have found so much support in the IBD community. Whether it be online support groups, working as the Pilot Director in Illinois for Health Advocacy Summit, having a team for the Crohn’s and Colitis Take Steps Walk, or participating in this fellowship, the amount of love and support I have received is unreal. People I have never even met are the ones I can talk to about any and everything. I have found strength and courage in sharing my story and in reading other’s stories. While all of this support doesn’t cure my IBD or relieve my symptoms, it certainly makes me not feel so alone. Living with an invisible illness is hard. But every time I share my story, the illness becomes a little less invisible to those who take the time to listen.

My IBD Life: Travelling with an Ostomy

By Nikhil Jayswal

Hi everyone!

I hope 2020 has been good for you so far. I am looking forward to a great year ahead. The month of January was packed with many happy moments. The happiest of them was the marriage of my younger brother which happened a few days ago. The wedding was more beautiful than I could’ve ever dreamed and I was overwhelmed with emotions. However, the wedding was also quite a challenge for me. It pushed me to do something I had always been afraid to do and that is what I have decided to share with you in this post.

I have Crohn’s Disease, which unfortunately didn’t respond to any drug. Hence I was given an ileostomy. My stoma saved me, but it did bring with itself a different set of problems to be managed. Travel is one such problem. My stoma is a high-output stoma. I empty my ostomy bag when it is near 90-100% full, which usually happens every 4-5 hours. This poses a problem for me when travelling for more than 2-3 hours.

There are several issues here. I could empty my bag in a public toilet, but there are not many clean public toilets in India. Additionally, people with IBD and/or an ostomy are NOT recognised as disabled. We cannot use accessible toilets which are often much cleaner. Then there’s the taboo associated with poo and the disease and the ostomy bag. Then there’s my slight OCD. :P Because of all these reasons, I’ve never emptied my bag in a public toilet. It has always been my home or a hotel room. When I have to travel, I starve myself for a whole day in advance. It empties my stomach and I travel without worry. It works well for me if the duration of travel is less than 6 hours.

It was a 2-day wedding with a 14 hour long trip to and from the wedding destination. This meant that if I wanted to avoid emptying my pouch on the road, I would have to eat only twice within 5 days. I had never done such a thing before. Doing routine tasks on an empty stomach is very difficult with an ileostomy. This was a wedding! I also had to take care of everything from the groom’s side, which meant that I wouldn't get much sleep or rest. This wedding was going to test my endurance to the limits which made me very anxious.

Somehow, I managed to do it all for three days. But on the fourth day, I ate more than I was supposed to. I was feeling so hungry that I couldn’t stop once I started eating. Also, this was very spicy food which is a big no-no for me. It is a major flare trigger and makes my stoma go nuts. I emptied my pouch before I boarded the bus back home. After 5 hours, my bag was half full. In the next 3 hours, it was 80% full. I was nervous and trying to decide if I could hold out for 6 more hours. After an hour, my bag was full. I knew if I didn’t empty it, a leak would happen. That would make things much much worse for me. So I had to do what I had never done before.

The bus stopped near a restaurant for a short break. I took some wipes, garbage bags, gloves and a fresh pouch with me, and asked my Mom to accompany me. This was the first time I was doing anything like this. I wanted someone to be there to help me in case something went wrong. I tucked a garbage bag in my pants below my stoma and wore gloves. My hands were shaking. After a deep breath, I removed my pouch carefully from the two-piece ostomy system on my stomach and let it fall into the bag. I prayed for my stoma to stay silent for the next 2 minutes. Fortunately, it did. I quickly attached a new pouch and breathed a sigh of relief. I bagged my old pouch twice and then disposed of it. I then had a small meal. My stoma didn’t produce much output for the next 6 hours and by the time I was home, it was only half full. I slept that night with a full stomach which felt very peaceful after the long trip.

I had never done such a thing before, and I probably won’t do it again unless it’s an emergency or a long duration journey. This is an expensive workaround for me. Ostomy bags are not covered by insurance in India. I cannot keep throwing away pouches every 4 hours if I decide to eat during a trip.

I am going back to college after a week. It is a 2.5-hour flight. Adding the time required for travelling to and from the airport and the check-in process, I will need a quiet stoma for 6-8 hours. Hence, I will be starving myself for a day beforehand. Later in May, I have to travel from New Delhi to Chicago for Digestive Disease Week. The travel time is around 24 hours. I will be starving myself for a day again. However, I am planning to eat during the flight. I’ll replace my pouch either during the layover or mid-flight.

Having IBD with an ostomy creates many difficulties for me. Depending on my intestine’s reaction to the food I’m eating, my stoma activity varies. This uncertainty is difficult to deal with. Every time I travel, I wish there were cleaner toilets that I could use. Every time I travel, I fear leaks, because I don’t know what I’d do if one happens. I also wonder if people will be kind to me. Travel was stressful for me even when I didn’t have an ostomy and relied on diapers. I couldn’t change diapers everywhere. I feared the looks I would get from people if I did it in a public toilet. The lack of proper sanitation facilities for the IBD population creates so much distress that many young people do not leave their homes and stop socializing. This seclusion further leads to depression.

In India, being a young adult with IBD is a challenge. Most of us compromise on many other aspects of our life just to be able to work or study. As for travel, I think if we are allowed to use accessible toilets, things will be much easier for us. It will permit us to live a more fulfilling life.

I don’t like ending things on a sad note, which is why I generally refrain from sharing my story. As I share my struggles with you, I’d hate to leave you feeling disappointed. So I’ll leave you with a few words from “Beautiful Pain” by Eminem. These words often inspire me when I am disappointed. I hope they inspire you too.

I'm standing in the flames

It's a beautiful kind of pain

Setting fire to yesterday

Find the light, find the light, find the light

Thank you for listening to me. Have a good day! :)

What I Wish I Could Have Told My Newly Diagnosed Self

By Rachel Straining

Hey. I know you’re feeling a lot of emotions right now, a lot of emotions that might not make sense for a while. You probably don’t want to listen to anything else because you feel like you’re drowning in new words and the world you once knew is breaking into pieces. But I need you to do something for me. I need you to breathe. And I need you to listen.

Let’s take a deep breath, okay? I know your heart is racing as fast as the thoughts that consume your mind, but let’s just try to breathe in, and breathe out. It’ll help. Hold onto that practice. It’ll come in handy.

Before you freak out and your mind starts spinning in a million different directions, find that steady breathe again, and just hear me out.

Your life is going to change, but you’re going to be okay.

Your life is going to change, but not entirely in the way that you think.

Honestly, yeah. There are some things that are going to change for the worse. It wouldn’t be fair to lie to you. It’s not right to sugarcoat it, because that’s not reality, and that’s not how you’re going to grow. You’re not going to grow by shying away from the hard stuff. It’s going to suck sometimes. There will be a lot of doctor visits, a lot of doctor changes until you find one who will believe and listen to you. There will be a lot of you being your own doctor and especially your own advocate. There will be a lot of tests run, a lot of blood drawn, a lot of nights and days spent in the bathroom or in bed.

But amidst the pain and the tears, and amongst the ways in which, yes, your life will get harder, here’s what will get stronger: You. Your bravery. Your resiliency. Your power. Your appreciation for life. Your ability to empathize with others. Your knowledge about and intuition towards your body. YOUR body.

So, with that in mind, here are a few things I need you to know:

At first, you may feel like you’re the only person in the world who has this disease. You’re not, I promise. There is an entire community out there of other people your age who are fighting the same battles, who understand what you’re going through because they’re going through it, too. Please don’t wait to find them.

Listen to your mom. She will almost always be right, even when you don’t want to admit it.

You are stronger than you even know and you will grow stronger every day, even when it doesn’t feel like it. That unrelenting strength will be right there, right inside of you.

Your past isn’t your present and your present isn’t your future.

Your bad days don’t equal a bad life. Your bad days are not forever.

You are going to cry and you are going to need to cry. Let yourself ride the waves and feel it all because keeping it hidden or bottled up will only make things worse.

You are going to need rest and you are not weak because of it.

You are going to have to give yourself grace through it all. It’s the only way. You are going to have to learn how to be kind, gentle, and patient with yourself.

Remember to breathe.

Find something every day to be thankful for, even when it’s hard.

You are not any less deserving of love because you have a chronic illness.

Do not settle for anything or anyone’s opinion.

You are not an inconvenience or a burden.

You can’t compare your health or your journey to anyone’s else’s.

You can’t put a timestamp on healing. Healing doesn’t happen on straight timeline and it doesn’t have a set end date. It’s complicated and hard and messy as heck. Putting in the work and putting yourself and your health first will always be worth it.

You know your body better than anyone else. You are going to have to fight for it.

You will often have to separate to elevate - from certain people, from negativity, from anything that holds you back and holds you down.

Your thoughts hold great power; thoughts become things if you let them. Both positive and negative.

Your chronic illness is an important part of who you are and what shapes you, but it does not define you.

Your story is worth sharing. Your voice deserves to be heard.

Your pain will become your power.

I guess what I’m trying to say is this: you’re going to go through a lot, but you’re going to learn from it and grow from it. You’re going to fight through it because that’s what warriors do. There will be days when you’ll feel so angry that you have this disease that all you can do is go to bed and hope tomorrow will be better. But there will also be days when that hope for a better tomorrow seems to finally exist in the present, when the anger starts to fade into the background and you feel like you can not only handle but conquer this life you’ve been given. This life is going to be good and bad and everything in between and you’re going to make it through.

I just wanted to tell you that.

Piecing Together My Chronic Illness Puzzle

By Grady Stewart

Photo by Hans-Peter Gauster on Unsplash

“There’s the me who existed before I was diagnosed with ulcerative colitis, and there’s the me who is living now after my diagnosis.”

There’s this fuzzy feeling that sticks to me sometimes when I think about the past. It’s especially prominent when I reflect on dusty memories wedged in time between late 2015, the season of my diagnosis with Ulcerative Colitis, and today. It’s sticky, soft, and sickly sweet like an overripe peach turning into a goopy marinade. It’s not an unpleasant feeling, or even unfamiliar. It flows through my body, sending tingly waves crashing through my veins, and turning all of my nerves to spiderwebs. In these periods of reflection, I feel incredibly present and grounded, yet out of place. The clips of my life are lifted out of their slots, and thrown into a random order.

Poetry aside, it’s hard to explain why I feel so odd when I think about who I was in the past. Maybe it’s melancholy. Maybe it’s nostalgia. If you ask me, it’s my body’s autoimmune reaction to change. It turns out I’m allergic to more than just seasonal pollen. When you live with a chronic illness, from the moment you’re diagnosed, the world becomes more chaotic. When I woke up from my initial colonoscopy, everything was spinning around me. That could have been the result of the anesthesia wearing off. However, it was also the first time I stopped recognizing my own body.

To go from being healthy to sick forever is a gigantic change. It’s looking into a murky puddle and seeing ripples rippling your reflection apart. You’re still the same person, but in that instant, you’re completely different too. An experience like that is enough to send anyone into a tailspin. On top of all that, when you’re diagnosed with IBD, everything else in your life seems to start changing more frequently and much faster. You change doctors. You change medications. You change diets. Sometimes, even your friends change.

You change so much when you’re chronically ill and the rest of your life starts to feel unfamiliar. Most people go through several periods in their lives. They have a childhood, teenage years, young adulthood, adulthood, and older age. I’m working my way through those life periods too. However, the difference is that change has shattered the stages of my life into two fragments. There’s the me who existed before I was diagnosed with ulcerative colitis, and there’s the me who is living now after my diagnosis. As a result, my past and present selves feel disconnected. The puzzle pieces of my life don’t quite fit together. There’s too many corner pieces, and not enough patchy centerpieces.

I’m learning to accept the changes that have changed my life and the changes that I can’t control. I am different from who I was, but I’m proud of who I am, and who I am becoming. Living with a chronic illness isn’t easy, and accepting a new life isn’t any easier. It means giving up on normal. It means embracing imperfect, and living with the unexpected. Over time, I’ve learned that isn’t failure or an insurmountable obstacle. Change has forced me to grow, to learn, and to adapt. I’ve met new friends, and I’ve accomplished things that I never thought were possible in the past. Acceptance isn’t a solid thing, it's a fluid and evolving process. Today, I’m less concerned about the pieces of my story being perfect. Instead, I’m happy to have a jumbled pile of pieces to put together in my own weird and unique way.

Besides, who wants to be normal anyway?

Coming to Terms with Crohn's

By Simon Stones

“This year marks twelve years since I received my diagnosis, and it is true that time is a great healer.”

Life has a funny way of teaching us many things. It presents us with a number of challenges along the uphill journey, though some people get more than their fair share. As a child, it’s sometimes difficult to understand why you’ve been so unlucky. “What have I done to deserve this?” Having lived with juvenile arthritis from the age of three, I had grown up knowing nothing else but hospitals, treatment and pain – making me feel different than everyone else.

At the age of 12, I began to develop some new bowel-related symptoms, which were largely ignored or overlooked. My mum fought over twelve months to get me referred to a paediatric gastroenterologist, since she knew there was something seriously wrong. I was dealing with excruciating abdominal pain, the embarrassment of having to run out of class to go to the bathroom, and I had a genuine fear of having to use the public toilets in school. Despite the in-depth description of symptoms to my local doctor and hospital specialists, I was repeatedly told that the only thing wrong with me was constipation. Instead of further investigations, I was prescribed laxatives, which only made matters worse.

My mum had repeatedly asked for a colonoscopy and gastroscopy to be done to rule anything out, to little avail. Mum had diverticulitis, a condition characterised by infection or inflammation of pouches that can form in your intestines. Since some of the symptoms were similar, we began to wonder whether I had the same condition. I had been more or less guaranteed that it wouldn’t be Crohn’s disease or ulcerative colitis, since I wasn’t a typical patient – what even is one of those!?

After many more months of fighting for an answer, I finally saw a paediatric gastroenterologist who decided to investigate using a colonoscopy and gastroscopy. Again, he seemed quite certain that it wasn’t ulcerative colitis or Crohn’s disease, given that my weight had been fairly stable, and my inflammatory markers hadn’t changed significantly, bearing in mind they were already elevated – but that was put down to the arthritis. I don’t think the healthcare professionals meant to make me feel this way, but I had begun to question whether it was all in my head. Nobody seemed to believe what I was experiencing, except my mum and dad, which is really hard to deal with. It certainly dented my confidence.

The day for the camera investigations arrived. It was Monday 21st April 2008. I hadn’t packed a bag as the plan was a day case admission for the camera investigations under general anaesthetic. For me, the worst part of the colonoscopy was definitely the bowel preparation you have to take – I feel nauseous just thinking about it! I still struggle getting the stuff down now for follow-up colonoscopies! So, I walked down to theatre, the anaesthetic was injected into my veins and I quickly drifted off. The earliest memories I have after the camera investigations was feeling incredibly sore (presumably where the biopsies had been taken), and I was lay in bed in a side room, with my parents by my side. Very shortly after, I remember the consultant coming into the room, before sitting on the side of the bed.

---

You know there’s bad news when somebody looks at you, tilts their head, and then sits down. “Simon, I’m so very sorry…” Before he had chance to finish his sentence, every worst possible thought came rushing into my head. “I never expected to find what I have found – it took us all by surprise.” He then told me that I had Crohn’s disease, and went onto say that as well severe inflammation and ulceration throughout my intestine, my entire oesophagus and stomach was inflamed and ulcerated too. After further descriptions, he finished by saying, “I’m sorry that we didn’t believe you.” After years of suffering, someone had finally listened to me. Despite the diagnosis, I was so relieved. I wasn’t going mad.

That relief, unfortunately, was short-lived. On the night when I was diagnosed, my parents had left briefly to eat. I was in a side-room, shut off from the rest of the world. All of a sudden, a wave of grief came over me, and I burst out crying. The thought –of having this disease for the rest of my life terrified me. Having read about Crohn’s during my fight for a diagnosis, I had read of so many people requiring surgery and ostomies as a result of Crohn’s disease, and this really did frighten me. Sadly, I didn’t know all what I knew now.

“After years of suffering, someone had finally listened to me.”

Treatment began almost immediately, and I had to stop injecting the biological treatment for my arthritis, since it had been ‘masking’ the Crohn’s disease. My doctor also instructed me to start a polymeric diet, which is a special liquid diet consisting of daily nutrient-packed milkshake-like drinks that I would need to take for eight weeks.

Each bottle was 250 ml, and based on my weight at the time, I was told I would need eight of these a day – that’s two litres of the stuff! This was also on the presumption that I would not eat or drink anything else but water for that period. I managed day one, and then struggled trying to get all of these drinks down. I thought it would be a doddle drinking these ‘chocolate and strawberry-flavoured milkshakes’ – but it wasn’t! It became even more tormenting when I returned to school on this polymeric diet, still feeling ill, and watching everyone else eat and go about their daily lives normally. I wasn’t ready to be back at school – physically and mentally, so I went back home and was home tutored for a couple of months.

As time went by, the polymeric diet did its job, and enabled my digestive system to rest. I tried to observe patterns in foods which seemed to make me worse, but other than green salads, vegetables and spicy foods, I couldn’t identify much else. Over the years, Crohn’s disease has just become another part of my life. After diagnosis, I tried to find out as much information as possible, though I didn’t have the opportunity to meet and chat with other young people living with Crohn’s disease or ulcerative colitis, which was a real shame.

This year marks twelve years since I received my diagnosis, and it is true that time is a great healer. I’ve never forgotten, nor will I ever forget, the pain and trials that I have faced because of Crohn’s disease, alongside my other health problems. However, I have learned to live with my conditions, getting on with what I want to achieve in the way I want to do so. Sometimes, it’s not easy, and there are times when it sometimes feels too much, but you do get there. As life has taught me in many ways, it can be incredibly short, and there are so many others who are worse off than me. So, if I can do something, I will, and I’ll do it with all my heart!

Reflections on Being Diagnosed with a Chronic Illness as a Child

By Leah Clark

When I was twelve years old, I was diagnosed with Crohn’s disease. From personal experience, I believe that being diagnosed at a young age can be seen as a blessing and a curse. Of course I am partially biased; I don’t want to go through my life wishing that I had been diagnosed at a later age. There is literally nothing that can be done to change that. With that, let’s start with the bad news about being young and diagnosed with a chronic illness. At the time, I didn’t fully understand what what was going on half the time. I remember feeling healthy, and then all of a sudden, I was feeling awful all the time. I would could home from school exhausted; I barely ate anything because everything made my stomach hurt. It wasn’t like a normal cold with the sniffles and running nose. That I could recognize, but these new painful experiences were different, and I didn’t know what was going on until I finally went to the doctor.

Reflecting now, I realize what else was going on, apart from getting Crohn’s disease. Part of my childhood was taken away from me, and that’s a pretty big statement. A part of my childhood was not lived because I was too sick to live it. While other kids my age were able to go to pizza parties and stay up late at sleepovers, I literally was too exhausted to keep up. Along with Crohn’s, I was also diagnosed with Celiac disease, so I can’t eat gluten anymore. Not only was I that sick pale girl with bathroom problems, I also couldn’t eat half of the diet a normal child eats. No chicken nuggets and pizza rolls. I had to bring my own snacks when it was someone’s birthday at school. This was also a time before the gluten free diet fads exploded the industry, so there were not many options for me that didn’t include basic foods. You never realize how integral food is in American culture until you can’t eat it anymore.

“A part of my childhood was not lived because I was too sick to live it.”

Aside from missing out on those experiences, I also missed out on social and developmental aspects. For example, in my middle school, there were a lot of tall, athletic girls and boys that participated in volleyball, basketball, tennis, track, cross country, so on and so on throughout the year. Sure, middle school sports aren’t really that much in terms of importance, but at that age, sports signified a time to spend two hours with your friends outside of the classroom. I wanted to be part of that. I didn’t want to miss out on what my friends talked about, who they were talking to, all the hot gossip. You know, typical middle school things. However, I was not good at sports, like, at all. While all my other friends were growing up, getting taller and having fun actually being good at sports, I was not. I was malnourished for so long that I skipped that part of purperty. In fact, I’m still the same height that I was in 8th grade, 5’2. Maybe this is why I don’t like participating in sports even to this day. I feel like I don’t “fit in” in the activity, and I sometimes still get angry that I can’t be better at them.

Anyways, the point I’m trying to make is not that I was bad at sports when I was younger, or that I couldn’t eat birthday cake with everyone. The point I’m trying to make is that I was deprived of childhood experiences that I would consider vital in growing up. Some days, I wish that I had a different childhood; I wish I wasn’t diagnosed when I was so young. It brought not only sadness into my life, but a lot of anger, for a long time. I was forced to grow up faster than my classmates. Heck, I understood how healthcare worked at the age of 14. But, it’s frustrating to be a child and not understand why bad things are happening to you for no reason. For awhile, I felt like I was being punished for something. Why do bad things happen to a good people? Am I a bad person? It took so long for me to realize that sometimes, life sucks, and sometimes good people get sick.

The picture on the left is my 6th grade school photo. My face was thin. I hated smiling. I felt like a ghost being trapped in a body I didn’t recognize. The picture on the right was taken this summer, almost ten years after the other. It’s safe to say I don’t feel that way anymore.

That being said, being diagnosed at a young age was also a blessing in disguise because I was an impressionable pre-teen and able to adapt to my new lifestyle of having a chronic illness in the same way I adapted to other major changes in my life (puperty, middle school, etc). I thought of it as, “Well, I guess this is a thing now,” and I just accepted it as my new life. It wasn’t until later when I would look back on my life that I realized I had experienced some pretty tough things. Of course, I didn’t love it at the time. Who would love having to explain to all your classmates why your face looks like an inflated balloon from prednisone? Or why you have to skip school to go to the doctor’s office for infusions every few weeks? I was lucky enough to go into remission fairly quickly after diagnosis, and (most) classmates did not even discuss my disease with me because it wasn’t affecting my day to day life. I have spent almost half of my entire life living with Crohn’s disease. I know tricks to help with flares. I’ve had years of experience in learning what foods affect my body. Yes, it has been a learning process, but as I grow older, I will be gaining more and more knowledge on how to handle my disease. I learn more about myself and what kind of person I want to be everyday. These experiences, though rough, have shaped me into the person I am today.

I was able to adapt to my new lifestyle of having a chronic illness in the same way I adapted to other changes in my life. I thought of it as, “Well, I guess this is a thing now,” and I accepted it as my new life.

The one thing about being diagnosed at a young age that outshines all the rest is the fact that I have met so many wonderful people with the same disease as me. I was diagnosed in the summer of 2009, and that same summer was the year my parents sent me to a summer camp for kids with inflammatory bowel diseases. I was a camper there every year from then on for six years and was fortunate enough to be a counselor for four years after. It was such a joy to meet kids my age that knew exactly what I was dealing with. We were able to share stories, give eachother advice on how to handle our illnesses, and just spend a week being a “normal” camper. I am happy to have been diagnosed at a young age, because I was able to meet other kids that were diagnosed at a young age, too. It’s a special bond. I have made lasting friendships with mnay people, and it has been an amazing journey. I understand not everyone diagnosed at a young age was able to meet people their age with their illness. IBD can be a very isolating disease, but the thing I find to be one of the best things about my illness is the community established from it. A good support system can honestly be the difference in someone’s life that changes how they look at their disease. I know for me, just the fact of knowing there were other kids like me, helped me so much with my when I was younger.

If I could give just one piece of advice to someone with IBD, it would be to establish a support system. If you haven’t met anyone that has IBD, I encourage you to seek them out. Whether that be a club on your college campus, a support group in your town, or even online, meeting other people will similiar experiences with you can be se rewarding. I was fortunate enough to establish these relationships at such a young age, and for that, I am grateful to have been diagnosed with my chronic illness as a child.

New Year's Resolutions from a Fellow Crohnie

By Erin Ard

Living a life with inflammatory bowel disease is in one word, unpredictable. For Crohn's disease, you pretty much do what you can to control the inflammation in your body by controlling your food intake and working with your gastroenterologist on what treatment methods to use. Not to mention, dealing with any other additional complications or side effects. I was diagnosed with Crohn's disease 10 years ago now and I've learned a lot about strength, resiliency, and the imperfection of the human body. Since my diagnosis, I've learned a lot about my body and my disease including how to accept all of its flaws. But because reality tells me I will deal with this disease for the rest of my life, my journey with Crohn’s is not over yet so there is still so much more to learn.

My journey with Crohn's started back in high school and honestly, I had no idea what would be in store for me. When I was finally sent to see a specialist, we would drive over an hour to my gastroenterology appointments. I started out taking mercaptopurine to suppress my immune system but quickly advanced to Remicade as a long-term treatment. On Remicade, I finally felt like myself again – at least a version of myself with additional manifestations of my Crohn's. The joint pain and short-lived fevers still persist, even today. It has been 8 years since I started on Remicade and a lot has happened over those years. I finished high school, moved away from home, and started college at the University of Wisconsin - Madison. Since starting college I've learned a lot more about myself as an individual and how Crohn's affects my life as a whole. In fact, it has changed since I was diagnosed and achieved remission the first time around.

I moved through the years mostly symptom-free. With only the rare stomach ache, but still able to maintain your daily routines. I knew precisely how my daily life would change if my disease was active. I valued the time I had thinking I could eat what I wanted without repercussion or go on a long run without my joint pain forcing me to limp the remaining distance. When your Crohn's is in remission, you have the freedom to eat delicious - maybe not so Crohn's-compliant - foods. You may even plan travel trips into your year with minimized anxiety of having an episode. I had the freedom to do all of these things! Since 2019 started, I tackled my vision board ideas by cooking more from scratch, trying out healthy recipes in my Insta Pot, and booking my first flight on a plane! Followed by several more flights to exciting new locations I hadn’t dreamed of experiencing because of the travel-anxiety instilled by my Crohn’s. For a woman in her early 20s with Crohn’s disease, I was crushing it! Then a few reality checks later, the unpredictability of IBD set in and I learned an important lesson. That no matter how far into remission you've gotten, odds are you might flare-up again in the future.

Photo by Evie Shaffer from Pexels

This sad truth is where I found myself recently. For the last few months, I've felt pretty off. I was getting more frequent belly pains, indigestion, irregular bowel movements, and my joints were starting to bother me more. I had originally attributed all of my symptoms to not eating well, which was a naïve thing to believe.. In retrospect, I had been struggling to stay in remission for the past couple of years. With the way that Remicade infusions worked over my 8 week time period, I would started getting symptoms again around week 7. That last week was a familiar struggle which included neglecting some of my responsibilities at school. I would end up skipping a class here or calling into work there - each pretty understandable given the circumstances but I still regretted having to do. About a year ago I went in for another colonoscopy (my third so far) because of these recurring symptoms and because my last one was towards the beginning of my diagnosis. The results didn't come back perfect, of course. They found some inflammation in my distal colon and the opening to my small intestine, which would explain my irregularity, stomach pain, and indigestion. I was told my gastroenterologist would be in touch to discuss what my next steps would be. After that visit, everything concerning my disease went on hold for awhile. In other words, life happened. My obligations for school and work started to take over my free time. Being the Crohnie I am, my limited will power from the fatigue would have me put the small tasks off until the following day. Meaning my health was put on a back-burner because they would always be put off until the “next day.” I was still receiving infusions every 8 weeks and conquering through my days, so I didn’t jeopardize my self-efficacy. I felt able to accomplish whatever I set my mind on. Eventually I started to wonder what my prognosis would turn into if I continued living this way. So I finally scheduled that appointment, this time with the gastroenterologist that performed my last colonoscopy.

Since I've started this fellowship with #CCYAN - the Crohn's and Colitis Young Adults Network, I've read so much about other people's experience and learned the expansive symptomology of inflammatory bowel disease in other bodies. Since the start of the year I realized how crucial it is to maintain your disease to prevent complications or necessary surgery in the future. Heading into the new year, my new outlook will be focused on achieving remission and maintaining a healthy body, any way I can. Let me share with you what my Crohn’s-related New Year’s resolutions are for 2020..

Learn to accept the unpredictable.

The first resolution I’d like to explore more is in how I think. Because Crohn’s can be so unpredictable, accepting this as a fact of the disease may help uncontrollable events feel less traumatizing. When you can learn to seek solutions or simply see the positive rather drowning in the self pity, loathing, disgust or whatever you might feel, you will feel a bit more at ease. It takes so much energy worrying about what "could" happen in the future. Like what "might" happen if you venture away from the privacy of your home and go to the movies today. Or "if" you might have the urge to go on an airplane while the bathroom is busy. Or "if" you don't make it to the toilet on time. Events like these are bound to happen and throw you for a loop if you aren't prepared. I should clarify that learning to how to accept and not worry about the future doesn't necessarily mean you shouldn't prepare for anything and everything. Because the first thing we all learn with IBD is that preparation is key to surviving any traumatic bathroom incident!

To take initiative when it comes to my well-being and body's health.

The second resolution involves how take action when Crohn’s is clearly affecting my body. My bad habits of binge-eating sugary treats or ordering high-fat take-out when I’m not feeling well starts to become routine when I don’t take responsibility for some of the fall out. I’d like to learn how to better take initiative to prevent consequences or make the most of my recovery. This means staying in close contact with my gastroenterologist about any trouble I’m having, not eating foods I know will quarantine me in the bathroom the next day, and keeping track of my symptoms, as tedious as that might be.

Recently I received not-so-great news from my gastroenterologist and it felt like my world was collapsing. After I took a calprotectin test which showed an adequate amount of inflammation, she told me that my Crohn's was flaring up again. It took me a bit to realize that what I was experiencing was actually long-lived. I had started getting symptoms months prior and it took me too long to get back on track. Something simple that could have helped me notice something sooner would have been a food log, which unfortunately, I don't have a lot of experience in carrying out. However, I do see their value and hope that this next year I can explore this path and hone in on what my exact food triggers are and how my body changes throughout the year. If you are now interested in doing the same, see this article on How to Use a Food Diary to Help Manage Crohn’s Symptoms and Flares from Everyday Health. I might not go as far as weighing my food, but at least I will get an idea of what food leads to which symptom.

My disease will change as much as I do.

This is one thing I needed to accept my disease started to flare up again. I was caught up in the idea that I had achieved remission and that everything would stay relatively constant. I just couldn’t see myself going through what I had in high school again, when my Crohn’s had surfaced. Since then it’s been a constant flow and I tried to push any thought that the disease would hold me back aside - which was an advantage for the time-being. However, this also kept me from growing because I just shut everything out. I wasn’t able to harness the power of vulnerability in having an illness to accept myself as I am and love my body.

After spending the last 8+ years in remission, with only some minor episodes, finding out my disease was flaring up again came as a shock to me. I've noticed that I'm the type of person who is apprehensive around big life changes. I like how things are going, I am comfortable with how everything is, and if I have to suffer through it a little, I am fine with that. However, this kind of mindset wouldn't suffice anymore and I've been realizing that more and more every day. My doctor and I have been working hard to put my disease back into remission. I'm trying some new medication out and taking everything new in day by day. IBD is so specific to every person, so how it presents itself or progresses is going to look different in all of us. And as all of us grow into young adults and beyond, our disease will change over time as well. For the better, or not so much.

My body will do some weird things, just learn to go with it.

You would think having to deal with gut pain would be enough, but there are so many other things that can factor in! The most common list of symptoms for Crohn's disease include abdominal pain, diarrhea, and fatigue. But the lesser known, indirectly related symptoms should also include weird noises, smells, urgency and accidents. Your gut will make loud gas-y noises while it’s quiet in the office. You will have to take frequent, unexpected breaks when the urgency gets the better of you. And the unfortunate reality is that sometimes, you won't make it to the bathroom in time.

The most healing part of my being more vulnerable this past year, was accepting these symptoms as they were instead of trying to control them. Because when I’d try to control them, I would get gut upset, constipation, or even more uncomfortable. I eventually started to tell people that yes, I have had accidents in the past and brushed this confession off like it was normal. Humor always goes a long way in these situations. Because of the healing I’ve already had, I want to pursue this resolution in 2020 as well to see my body’s flaws in a new light.

My hope is that you will find some inspiration to create your own list of resolutions for yourself. Whether they are similar to mine or completely different! Join me in making a resolution list for yourself this year and we can both actively improve our life with IBD 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.