The Side of Crohn's Disease Doctors Didn't Warn Me About

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When you hear the words inflammatory bowel disease (IBD) most people think, “Oh yes! It’s a disease that affects the bowels!” Which is 100 percent correct, but what a lot of people do not know or just don’t think about is that it’s not just a bowel disease, and it is not the same as irritable bowel syndrome (IBS). When people with IBD say they are having major surgery, it tends to be on the intestines, whether it’s removing parts of it or removing the colon completely, and sometimes this means living with a permanent internal or external ostomy.

This is where my surgical journey with Crohn’s disease differs from others. I have had four major surgeries with one more coming up this year, yet none of them were on my bowels or even near my abdomen. These surgeries all go back to one source: Crohn’s disease.

When I was 17 years old, I finally received a diagnosis of Crohn’s disease. At the time I didn’t know much about it. I just knew it was something that was making my stomach hurt and made me feel really ill. So, my pediatric gastroenterologist started me on a high dose of prednisone, along with other medications to better manage my disease.

I never knew much about prednisone other than it is used to treat inflammation and is used often in patients with autoimmune diseases. Before starting it, I was told about the common side effects such as hunger, insomnia, rash and moon face. At that time, I didn’t care about those side effects. I just knew it was making me feel better, which was all that mattered. That is, until a few months later when I was hospitalized for a bad flare. The doctors of course did the usual testing — blood work and a CT scan of abdomen. The testing was nothing out of the ordinary for this kind of visit. Until one of the doctors came in and said, “We’ve found something on the CT scan of your abdomen.”

hip replacement x-ray
Aaron’s hip replacements.

I was expecting something was wrong with my intestines. This wasn’t the case at all. The CT scan caught the top of both of my hipbones and by pure accident they realized I had what is called avascular necrosis (AVN). I was told they called an orthopedic surgeon who would be in to look at my test results and I might need surgery immediately while I was still there at the hospital. I had no idea what AVN was or what it did — I just knew it was not good.

I came to find out that AVN is a very rare degenerative bone disease. AVN essentially cuts off the blood supply to the affected bone, and the bone begins to die or become necrotic. The most common area of the body to get AVN is in the hips, but you can get it anywhere in the body such as the elbows, wrists, knees and ankles. The bone continues to break down and it may eventually collapse, leaving the joint crushed.

In my case, AVN came from the prednisone used to treat my Crohn’s flare. So a medicine that was making me feel better was simultaneously killing my hipbones. I was never warned about AVN being a side effect of prednisone. It was never brought up by any of my doctors. Yet, there I was finding out after it was too late. In my case, my doctors said they had never seen AVN develop after only one round of prednisone but that it happened to me. Not everyone gets AVN who take prednisone, and AVN can also be caused by a couple of different things such as traumatic injury, but doctors do not exactly know who will get AVN from prednisone or why.

The doctors told me I would eventually need surgery, but could wait. So, waiting I did. My hips progressively got worse over the next two years to the point where I was having trouble walking. It was at this point that I gave in and went to see my orthopedic surgeon. At 20 years old, in my junior year of college, I was told that I needed to have both of my hips totally replaced if I wanted to regain normal mobility. I wasn’t sure how to react at the time, knowing that I needed a surgery that some people never needed, and if they did they were typically senior citizens.

healed scar on hip
One of Aaron’s healed scars.

Three surgeries and a year of healing and therapy later, I came out with two totally replaced hips and two huge scars. I don’t often show my scars to people. In fact, very few have seen them outside of my medical team and close family, because they are so huge. Not that I am ashamed of them, it is just that they are hard to look at sometimes. I am however, going to share them with you, because I want you to see a different side of Crohn’s disease and what can come of a disease that is typically just associated with the gastrointestinal tract.

Through this time, I had to take a year off from college to recover and regain mobility in my legs. In that year, I married the love of my life, regained the ability to walk, and went back to finish up my bachelor’s degree in biology, which I did. I am now working on a master’s degree in biomedical research. My thesis is on studying how the gut microbiome plays a role in the pathogenesis of IBD, and really getting into the forefront of IBD research.

So, why am I writing this?

I recently had a setback where I dislocated my left hip by just twisting the wrong way, and I found out that a portion of my implant is failing. Where I thought I was going to get 15 to 20 years out of my replacements, I only had three.

So on March 7, I had a left hip replacement revision surgery and leg lengthening to fix the parts that are broken. I will have one more surgery later this year on the other leg. This is just a minor setback in my journey. I still intend to finish up my master’s degree on schedule and continue into a Ph.D. program to dive deeper into learning how the immune system and diseases work. My ultimate goal is to work in IBD research.

scar from surgery on man's hip
A scar from Aaron’s recent hip surgery.

Not everyone with IBD has the same type of surgery or story, and that’s why I felt it was important to share this side of my Crohn’s story with you. I love this quote: “From every wound there is a scar, and every scar tells a story. A story that says, I survived.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Person Who Is Falling in Love With Someone With Chronic Illness

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First, it’s important to remember that the person you’re falling in love with is so much more than their illness. It might be a huge part of their identity and it might be a tiny part of their identity, but it is only part.

Secondly, it is important to remember that the farther you fall in love, the more their illness may become part of your identity. I always think about that moment from “Scrubs” when Carla, whose husband, Turk, has diabetes, describes herself as a WOD: Wife Of Diabetic. So I guess I can be a GFOC: Girlfriend of Chronnie. Our identities are inherently wrapped up in those of the people we love.

Loving someone with a chronic illness can mean that they’ll be too sick to go out to dinner on Valentine’s Day, but two days later they may feel well enough to go see “Deadpool” with their dad. Here’s the thing though: I think it’s actually way more fun to eat at home while watching your favorite TV show than it is to sit in a restaurant overcrowded with grossly affectionate couples. Loving someone with a chronic illness can give you a different perspective on the “normal” things couples (and people in general) do. Little things like going out to eat are not that important, I feel. Remember (and this is a good reminder for all of us), your relationship is about the person you love, not what you do with them.

When I met my boyfriend, he’d already been living with Crohn’s disease for many years. It was normal for him, but I’d never had a loved one with a chronic illness before. We were long-distance for the first year, and he told me the details of his illness via Skype. He was used to doctors and procedures and medications and surgery. I was not. I’m still not. But it’s OK, because him being healthy is what I’m after and if all these things are what it takes, then so be it.

My greatest warning for those of you who are falling in love is this: Sometimes you will see the person you love in a great deal of pain, and there may not be a single thing you can do about it. I believe it’s the hardest part. Because you are sad and scared or just human, you will ask (repeatedly), “How can I help you?” and the answer can be a frustrating “You can’t” almost every time. My biggest advice: Celebrate and embrace the times when you can. Offer your arm to help them stand, wipe their forehead with a warm or cool washcloth, rub their head or their feet. If you don’t know in your heart that they would do all the same and more for you in an instant, you may not be with the right person.

Signed,

A very in love GFOC

woman and man wearing glasses
Hannah and her boyfriend.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Wish I Knew Before My Crohn's Disease Diagnosis

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I remember the day like it was yesterday. June 22. My diagnosis day. I had been in and out of emergency rooms for weeks. I had spent hours at doctors’ offices. The months before I had been progressively becoming more ill, feeling more pain and eating less. And then I was diagnosed with Crohn’s disease.

Crohn’s disease is an inflammatory bowel disease (IBD), a chronic and incurable illness where my immune system attacks my digestive system. This can cause many symptoms such as pain, malnutrition, ulcers, strictures and fistulas. IBD affects an estimated 1.6 million people in the U.S. alone, according to the Crohn’s & Colitis Foundation of America, and it doesn’t discriminate. In fact, most IBD patients are diagnosed before they’re 30 years old, according to the Mayo Clinic.

When I woke up from an emergency colonoscopy and heard my surgeon throwing around terms like inflammatory bowel disease and ostomy, I was confused and scared. But it was more than that — I was sad. Sad for my ignorance. Prior to my diagnosis, I had never heard of Crohn’s disease. I had been living in the world and ignoring other people’s challenges. Not on purpose, but I was ignoring it all the same.

The one thought that consumed my mind was how. How had I never been aware of something so serious and so prevalent? What opportunities had I missed? Opportunities to help others. Opportunities to comfort and advocate. Opportunities to be with people who experienced such a life-changing sickness.

What might I have learned had I sought out people with Crohn’s disease? Everyone I met post-diagnosis who had this illness seemed to me to be happy, strong and full of joy. They seemed to truly enjoy life, even though their lives could be difficult.

I longed to know what their secret was. How did they embrace life so fully? Sadly, it took me getting seriously ill to find out how to feel the good in life as keenly as them. I wish I had known how to experience joy completely before I got sick. Everything I had overlooked while being healthy — all of the days filled with laughter and fun — now were remembered with regret for all that I took for granted. If there’s one thing I wish I had known pre-illness, it’s to embrace life and be grateful for everything, no matter how menial it may seem.

Now I fight so that others won’t have the same regrets I have. I fight for awareness, for redemption, for joy. I fight to create a world where Crohn’s disease is a household word. I fight for myself and for every other IBD patient. 

Follow this journey on Crohnie Journals.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Man With Crohn’s Disease Shows Off Ostomy Bag in Shirtless Gym Selfies

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Karl Tucker, 25, from Oxfordshire, England, was diagnosed with Crohn’s disease, a chronic inflammatory bowel disease, in 2014. After several surgeries and visits to the hospital, he now has an ostomy bag.

Between operations in April and August of 2015, Tucker lost nearly 30 pounds, and he was so sick he couldn’t wash or dress himself, according to the Daily Mail. He used to go to the gym and play soccer five times a week, so when he was finally able to resume his fitness routine in December 2015, he used selfies to track his progress — and boost his confidence.

Tucker then decided to share the photos with Crohn’s and Colitis UK’s Facebook page, and he received an overwhelming response.

“I don’t usually post but thought why not? After having 3 surgeries, I finally got back to doing what I love…back in…

Posted by Crohn’s and Colitis UK on Saturday, March 5, 2016

The post reads:

I don’t usually post but thought why not? After having 3 surgeries, I finally got back to doing what I love…back in the gym and playing football! No excuses, just hard work and dedication. These photos were taken a month apart in January, February and March. I’m on the waiting list for a proctectomy but keeping positive. Anything is possible!

While Tucker admits it’s still a “daily struggle,” he told the Daily Mail he hopes to inspire others to share their story and keep pushing.

“I wanted to show people that you can achieve anything,” he said. “I’ve had such a great response. People from all over the world have messaged me saying thank you and asking questions.”

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To My Fiancé Who's About to Marry a Woman With Crohn's Disease

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My Grandma recently told me people cry at weddings because they know the couple has no idea what they’re in store for — the good, the bad and everything in between. As I prepare to marry the man of my dreams on June 4, her words have stuck with me, especially since I’ve battled Crohn’s disease for nearly 11 years and lived with the fear of what tomorrow will bring ever since.

As most people who’ve planned a wedding and gotten married can probably attest, these last few months leading up are filled with anxious excitement and a great deal of emotion. I told my fiancé, Bobby, I had Crohn’s disease on our third date in August 2013, and since that time he’s been nothing but compassionate, patient and strong for me.

Oftentimes with chronic illness, we can become so accustomed to our support system we may unknowingly take them for granted. A few weeks back, my fiancé wrote me a letter about what it’s like to watch the one you love fight a chronic disease — and not just anyone, but the woman he’s going to marry. It was a real eye-opener for me. He talked about the first time he experienced a hospitalization with me during a small bowel obstruction in February 2014.

“I realized just how important you were to me and that I did not want anyone but me to be in the position I was in to always console you and just be there when you needed someone. We had been saying ‘I love you’ for several months by then, but it was in this moment I knew that I wanted to be there for you always.”

Since I was diagnosed at age 21 with Crohn’s disease, I’d be lying if I said dating was easy. I oftentimes joked that I could quickly see a guy’s true colors during the difficult days. One boyfriend broke up with me the week I was diagnosed. I had just gotten into my parent’s car following a weeklong hospital stay. I needed a wheelchair because I was too weak to walk, and he decided to end it over the phone. Another blamed the high price of gas and said he would rather fish up north in Wisconsin than visit me in the hospital. To this day I can remember how disappointed I was that night watching the Fourth of July fireworks reflect off the hospital window with my mom. With time, that disappointment transforms into amazing clarity.

man and woman in hospital bed with flowers
Natalie and her fiancé, Bobby.

Then, you meet the person. It’s so different and it all makes sense. You meet the one who doesn’t go running in the other direction because you have an invisible flaw. The man who instead of being scared asks questions and wants to educate himself so he can be stronger for you. The one who holds your hand and looks you in the eyes as the nurse struggles to get your IV for the fourth time. The one who pulls over at gas stations while you’re running errands and holds your hair for you in the parking lot when the pain gets to be too much. The one who brings home your favorite Popsicles and chicken broth when he knows you’re struggling to handle solid food. The man who cheers you on during your injections and then puts the shots in the sharps container after, no questions asked.

When I walk down the aisle towards Bobby this June, I can say without a shadow of a doubt I have the best partner and man and everything I need to fight this illness as bravely as possible. He wrote me a letter — and now I want to write him one.

Dear Bobby,

As you’ve seen over the past few years, my health is often a mystery. One day I can feel perfectly healthy, and the next I can call you 20 times while you’re at work from a grocery store bathroom as I lose all feeling in my arms and legs from the pain and need you to help me immediately.

While Crohn’s will forever be a part of me, I want you to know I promise not to let it define me or us. I don’t envision our lifetime filled with sickness, but rather happy, feel-good days and times we need to be brave and conquer challenges. I promise to fight and endure and always do what it takes to be healthy for both of us. I don’t believe in happenstance, and in my heart I feel you came into my life because your sense of calm can comfort me during the worst of storms. I promise to always communicate with you openly and let you know when I’m struggling.

One of my biggest fears is being pregnant and never knowing what the next day will bring. I fear the thought of an unexpected flare-up or needing surgery while I’m pregnant. Visiting high-risk OB-GYN doctors and doing injections with a baby bump were never something I thought would be a part of family planning, but I have faith that just like other hurdles we’ve overcome, we’ll make it through.

My fears of this disease have nothing to do with me quite honestly, but with you and our future family. I don’t ever want to drag you down or make you miss out on events with family or friends because I’m having a “bad day.” I never want our children to think of their mommy as “sick.” And my biggest fear of all is passing along this dreadful disease to our offspring. It breaks my heart to think of our babies having to battle this — and knowing it was passed down from me. As a woman and your future wife, these are the types of thoughts that cross my mind.

You always tell me you never worry about things you can’t control, and I vow to do my best to be better at that. It’s comforting to know we’ll be a team and you’ll be by my side through all that life throws our way. I promise to keep a positive attitude and do all I can to manage this disease, whether it’s through lifestyle or medication, and to lean on you when I struggle to stand up on my own.

When I was diagnosed with Crohn’s disease in 2005, it felt like my world was crashing down. While the journey since then hasn’t been easy, meeting you, falling in love and getting to marry you has put it all in perspective and given me the confidence to know I don’t ever have to fight this alone.

Thank you for holding my hand and my heart and defining what it means to love unconditionally. I can only hope everyone with a chronic illness is blessed with a partner with the ability to understand and empathize like you.

Love you always — thank you for being my rock,

Natalie

engagement photo of man kissing woman
Natalie and Bobby. (Photo credit: J Elizabeth Photography)

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To My 12-Year-Old Self on the Day of My Crohn’s Disease Diagnosis

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Today you will be introduced to what will become your lifelong partner, Crohn’s disease. You have never heard of this disease, but your gastrointestinal (GI) pediatrician will explain it to you this afternoon when he tells you about your diagnosis.

After all the testing you’ve been through, the pain and sickness you’ve endured up to this tender age of 12, the diagnosis will be a bittersweet announcement. They finally figured out what is wrong and they can help make it better. Unfortunately, it won’t get too much easier for you. Yes, the doctors will start you on high doses of steroids since the treatment options for Crohn’s disease are minimal at this time in 1984. However, there are difficult side effects to steroids especially at the high dosage you will have to be on for quite a while. As a 12-year-old, adolescence is already a difficult time, especially for young girls like you trying to adjust to the natural changes of their bodies. You’re about to get some additional obstacles that you’re going to have to learn how to cope with: an incurable disease and the embarrassing side effects of both the disease and the steroids.

young girl smiling in hospital bed
Janelle at age 12 after seven weeks in the hospital

Over the next 30-plus years, more treatments will become available to you, none without difficult side effects you’ll have to get used to and learn to live with. There will be some medications that work better than others. There will be some medications that will work wonders until your body becomes immune to them, forcing you to try yet another treatment or cocktail of several treatments.

Your GI pediatrician is now here to explain a few things to you. Try to stay calm.

This is what you learn:

1. He is explaining that all the tests you’ve gone through, the upper and lower GI series, the twice daily blood work, the endoscopy, the colonoscopy, the bone marrow test, etc. confirm Crohn’s disease with the possibility of cancerous lymph nodes. Oh my goodness, you just heard the word “cancer” and your mind is spinning. You want to cry, but you see the horrified look in your parents’ eyes and realize you have to stay strong, so you do. You continue listening to your GI.

2. He is explaining that Crohn’s disease is chronic inflammation of the intestines, but can include ulcers and fistulas and can affect the entire digestive tract from the mouth to the anus, and that, while you don’t know this now, will be the path of your disease in the years to come.

3. He is explaining that he has scheduled you for surgery to resect the diseased 7 inches of your small intestines (stay strong, this is the first of many more surgeries to come over the years — you’ve got this, this one will set the path for you). The surgeons will also remove the three potentially cancerous lymph nodes (remind me to look up what a lymph node is), which turn out to not be cancerous (huge sigh of relief) and the surgeons will remove your appendix to get it out of the way. You will have scars, but own them. Remember that scars build character; they tell part of your overall story.

4. Your doctor is explaining the steroid treatment that will start after surgery.

5. Your doctor is explaining that you will continue to be fed via the total parenteral nutrition (TPN) line inserted under your collarbone to rest your gut throughout the remainder of your total seven-week hospital stay. You’re OK and you can still have hard candy – yum!

Today is your turning point. You have just been bombarded with a lot of information about how your life, as you know it, will never be the same. How you adjust is completely up to you.

You have been diagnosed with a disease that is not very well known. People won’t want to talk about it openly given the nature of the body parts involved, so sometimes you might feel alone. You are going to feel embarrassed and humiliated as the disease takes control of your body on some days. You are still going to experience excruciating pain. You are going to be so exhausted on some days you won’t have the energy to get out of bed, take a shower, feed yourself, work or take yourself to the doctor.

You have two choices:

blonde woman wearing shirt that says fight like a girl

1. You can feel sorry for yourself, cry woe-is-me all your life and curl up on the floor and live in silence, or…

2. You can embrace this difficult change and this difficult disease in a manner that you will never let it define you or get the best of you. You can use your experience with Crohn’s disease to educate others, to support others and to rock your life with the spirit you had prior to be admitting to Johns Hopkins for all of the testing, diagnosis, and surgery. Embrace the days you feel down and alone and upset and angry and frustrated. These are natural feelings and you owe it to yourself to acknowledge these phases. You don’t know this just yet, but you will end up managing all of this in a very productive and classy manner, always displaying your smile and strength and making a difference for many others who suffer with this disease because you don’t ever want your diagnosis to be in vain.

I am so glad I am me, disease and all!

woman sitting in chair smiling after surgery
Janelle smiling after her sixth surgery

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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