Married With an Ostomy: The Day I Wish My 13-Year-Old Self Could See

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They never really came out and said it, but I’m pretty sure my parents thought I was destined to be a spinster.

I had problems making friends when I was younger, and being stuck in the hospital with Crohn’s disease for two years didn’t help. It also didn’t help that after ostomy surgery I was overweight from steroid medication and awkward from having been isolated for so long. I was the easy target for the teenage boys to make fun of, not to date. I didn’t have boyfriends like my friends did. I was the “single” girl in my group of friends.

My dad would always ask me, “When are you bringing a boy home?”

“Ugh,” I would think to myself and roll my eyes at him.

I’m pretty sure my parents thought my ostomy was the reason I wasn’t bringing boys home.

I think that it was actually one of the biggest fears they had when deciding if I should have surgery. Would Jessica be able to find love with a bag on her body? Would men find her gross? Would she be comfortable enough with herself to be open to love? I think they thought all those things. At least, I thought they thought those things.

Well, I can tell you that me not bringing boys home was not because of the bag.

Not dating in my teenage years was 100 percent the product of me being the most awkward and self-conscious* human being on the planet and not at all because of my ostomy. As soon as I escaped my awkward and strange teenage years, I had no problems dating. None.

*To be clear: self-conscious due to my weight and looks, not at all because of my ostomy.

Yeah, yeah, I say this all the time — I can do anything anyone with a full set of intestines can do! And it’s true! Finding love, however, was the one that always kind of had me worried.

For those who have followed me throughout the soap opera that was my love life, you know that dating with an ostomy wasn’t a problem.

OK, scratch that — finding boys to date was never a problem. Dating was a “pain in the butt that I don’t use,” because the boys were sometimes jerks. Oh, and them being jerks had nothing to do with my ostomy and everything to do with them just being immature young men. Dating sucked until I found Matt, the perfect match for me. We dated, we moved in together, and then we got engaged.

Holy crap, we got engaged.

portrait of bride and groom looking at each other

You know how most little girls spend years and years dreaming about their wedding day? I did all that, up until I got sick. I stopped, thinking it would never happen for me.

Until, well, about one year ago when all the things that have to do with weddings overwhelmed my entire existence — date, venue, food, drinks, invites, decorations… and, suddenly, I began to worry things that I hadn’t worried about in over 10 years:

Would my Crohn’s act up from all the wedding stress? (Even though work stresses me out every day.)

Would I have an ostomy leak during the reception? (Even thought it rarely ever happens to me.)

How would I get to the bathroom multiple times throughout the evening in what will surely be an extravagant dress as only I would wear? (Even though I hadn’t even picked my dress.)

What would I even be able to wear? Could I even wear a real wedding dress?  I didn’t know.

I don’t know what it was about the idea of a wedding, but I have not worried about how to dress with an ostomy, bathroom usage or leaks since I was 15, but here I was, worrying about it all over again.

I was suddenly aware of exactly how worrisome and life-altering an ostomy can be. I was reminded of how all-consuming an ostomy can be.  It worried me that the most important day of my life would be ruined by the very thing that saved it.

I had forgotten, to be honest.

Thankfully, careful planning and attention made the day go off without a hitch and I can finally take that list called “things I thought I might not be able to do with an ostomy bag” and check off something new:

Getting married.

I didn’t get sick, even with the extra stress, I was able to keep my ostomy in check, I had the most amazing group of women to keep me going…

And I got to wear the (tightest, most form-fitting) dress of my dreams.

With.

An.

Ostomy.

photo of woman wearing robe and photo of her wearing a wedding gown

Looking back, I don’t know what I was so worried about. I go through every single day with an ostomy without any problems! This was just a good reminder not to take anything for granted.

It’s funny, because at some point during the reception speeches, it was said: If 13-year-old Jessica could be here now, she wouldn’t believe it was happening. 

After all, without my ostomy, this day would never have happened.

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How My Therapy Pet Helps Me Cope With My Crohn’s Disease

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After being diagnosed with Crohn’s disease at the young age of 9, I was given two choices: See a psychiatrist or get a therapy pet. At the time, my mom was strictly against all animals, especially animals in the house, so I went to my first appointment with a psychiatrist.

The appointment was a total bust.

I am quiet as it is, and I don’t like to talk about things that upset me, so I didn’t see myself opening up to a psychiatrist. I didn’t get a pet, and I didn’t go back to counseling. I attempted to cope on my own.

Fast forward five years, I wasn’t in remission and was falling deep into depression and overwhelmed with anxiety. I was so overwhelmed and didn’t know how I was going to continue to cope with my disease on my own.

Then I met Nina.

I am beyond thankful that Nina came into my life when she did. Nina is a border collie, and I am convinced she has a motherly instinct when it comes to me. She can sense I am going to have a flare days before it happens. She helps me with daily tasks, such as walking down the steps, she stays at my side, she listens to me when I am upset and she is honestly my best friend. I couldn’t have asked for a better dog.

If I could say anything to friends with a chronic illness, it would be to get a therapy pet. The joy Nina has brought me cannot be matched. She’s increased my physical activity because it’s important for her to walk daily. She helps me cope with my disease, she’s shown me what a true companion is and she’s taught me more about friendship than any friend I’ve ever had.

My therapy pet not only saved my life, but she continues to make my life better.

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When Crohn's Disease Pounces on My Life as a Single Mom

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Although a lot has changed, well mostly I have changed, in the almost four years since my separation and divorce, one thing remained my constant priority. No one will hurt my little girl as long I was around. I was, and always will be, her protector. She would not experience pain, strife, disappointment or sadness while on my watch (unrealistic, I know). The past few years has been a journey of self-transformation and transition, from a traditional family unit, to co-parenting; from fear and trepidation, to determination and confidence; from remaining silent, to finding my voice. It was my hope that by observing my personal growth and determination as I transitioned from mother and wife into the role of single mom, that my daughter would learn never to be afraid to speak her mind and express herself, and just to be happy in each moment. I did my best to help my daughter navigate these changes in a healthy way, and I think she transitioned pretty well. Little did I know that my role as protector would be challenged by the one who was supposed to do the protecting… me.

woman standing with her young daughter
Alyssa and her daughter

I was diagnosed with Crohn’s disease (a form of irritable bowel disease along with ulcerative colitis) in February 2001, and over the years have had several complications, surgeries and hospitalizations. This disease is chronic. It never goes away. It’s always lurking in the background, ready to pounce like a cheetah on its prey. It happens quickly, with no warning, and before you know it, you’re explaining your history to another ER doctor while praying the pain meds kick in before you vomit in the mauve-pink basin. Sometimes you hear the whispers of nurses and doctors not completely familiar with Crohn’s… “She’s back again…” Cancelled plans become the norm, and big events or trips are always tricky and met with trepidation.

Don’t get me wrong, I have great doctors who are working fervently to help not only me, but all the other warriors who have IBD. But there’s always a lingering pang, or a day where I’m in the bathroom more than any other room in my apartment. I’ll have a few good days, almost enough to fool me into thinking we’re on the right path with meds. Maybe this time is different? We got it right this time and I can make that trip that I’ve so been looking forward to for months. But then there it is…the knock. I try to ignore it and go about my daily routine. The knock gets louder and harder to ignore, but still I try, all the while whispering “No, not again.” Then I’m stopped in my tracks… and the cheetah pounces. 

There’s no ignoring the cheetah once it’s attacked. I make the call to my friend to give me a ride to the emergency room and arrange for my daughter to sleep at my mom’s so she can bring her to school in the morning. Then I sit my beautiful angel down on the couch with the familiar mask of ignoring the pain so she’s not so scared, all the while looking into her big, wonderfully loving eyes, knowing that she, too, heard the knock and knows the sound all too well. She heard it while we did her homework when I sat with my head on the table while she read her sight words to me. She heard it when I was up and down, in and out of the bathroom, while watching TV. She heard it when I laid on the recliner with my eyes closed because I had no energy to do anything else, trying not to wince with each stab of pain, while she played on her tablet. And as I sat her down, I could see in her tear-filled eyes that she knew the conversation that was coming all too well, and wasn’t even slightly surprised.

You see, this year has been particularly challenging with two major surgeries and multiple hospitalizations due to complications. More meds, more changes, increased weakness and lethargy, dramatic weight loss and lack of appetite, attempting to maintain my apartment while out on disability from a job I loved, while desperately trying to create and maintain some semblance of normalcy for my daughter (I am fortunate to have a large web of support in family and friends who have made this juggling act even remotely possible).    

So there we sat on the couch, mother/protector and daughter. Her eyes well up with tears as I begin the familiar speech. “But I don’t want you to go back to the hospital,” she whispers as the tears break free and run down her cheeks. My heart breaks for my little girl. That pain in my heart and the guilt is worse than the pain in my stomach, which feels like the scene from the movie “Aliens” when the creature rips through the person’s abdomen. I attempt to reassure her, “The doctors just need to see what’s going on and change my medicine to help me feel better.” “OK,” she reluctantly relents. We hug, we cry, we love each other. I kiss her head, her nose, and the tears on her cheeks. I chastise my body for doing this again.  

But mostly, I grieve. I grieve for my daughter and that her childhood is marred by my disease. That during these times when I’m hospitalized she’s shuffled to school by my mom, picked up by my brother and watched by my best friend all in the same day. It should be me doing those things. I should be packing her lunch and checking her homework, cuddling her in bed as she falls asleep. Instead I’m on a gurney again, foggy from the pain medication that gives me a false sense of temporary relief. I call to say goodnight, “I love you to the moon and back. Muah (throwing a kiss through the phone),” I say. I can hear her enthusiasm since she’s spending time with her cousin who is more like her sister, “I caught it! I love you, too. Feel better and come home soon… please,” she pleads. It’s not until the “please” that I hear the slight crack in her voice. My heart breaks again. Not because I’m sick, although it’s no walk in the park. I can handle the pain, the procedures, the side effects, the exhaustion, the lack of appetite. It’s the lack of control, my desire to protect her from all of this and my role as protector, has yet again been disrupted by the knock. Previously I said that with me on the job as her mom, she would not experience pain, strife, disappointment or sadness. Yet to know, recognize and accept, that sometimes because of my illness, she has experienced all of those things, has been the hardest pill to swallow… and trust me, I’ve swallowed plenty. 

When I’m finally discharged home from the hospital and walk back into our home, we hug like we’re never going to let go. Yes, she visited me while I was there, but it’s not the same. I was home. She looks at my arms, and gently rubs the bruises from frequent blood draws and IV changes. “Did it hurt?” I lie, “Not too bad.” Relief washes over her face, but she keeps rubbing the bruises. My mom (an angel through all of this), is there too, making us dinner so I can rest and focus on being present with my daughter. I ask, “Did you do your homework?” She replies, “Yes, Mom!” with a roll of her eyes. OK, we’re getting back to normal. I tell her I need her help and her eyes light up, enthused and excited to have a role in me getting better. I tell her it’s her job to remind me to walk every day so I get stronger. “Oh, Mom, that’s easy!” she professes. I suggest we start now, while we wait for dinner.  

So we walk out the door, hand in hand, and take a lap around my apartment complex, never letting go of each other’s hands. One lap was all I could do, so I sit on a bench while she plays on the playground in the center of the complex. There’s never been a more beautiful sight than seeing her do cartwheels and sing and climb and play. The air never smelled so fresh. Then the sun began to set. I make her come and sit next to me and I put my arms around her. I make her look. I make her see the sunset, in all its beauty and splendor. We sat there until the mosquitos let us know it was time to go inside. She looks up at my face and says “That was so beautiful.” I respond, “You’re right, it was!” and as I looked at the smile on her face, I knew I couldn’t agree more.

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5 Important Lessons My Son’s Crohn's Diagnosis Taught Me

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Hearing that our 3-year-old son has Crohn’s disease was hard — very hard.

For us, it marked the end of a frustrating year in which our concerns about our son’s health had been ignored. His doctor repeatedly passed off his symptoms as just a toddler thing that would sort itself out.

Things reached crisis point last year when his symptoms became acute, and we were regular visitors to our local doctor, walk-in center and child assessment unit in the hospital. A misdiagnosis meant that he continued to get worse. By the time he was admitted to the hospital, he was seriously ill and had to undergo invasive procedures and treatment, which left him (and us) traumatized.

We decided to live in the hospital with our son to support him during his treatment and recovery. This wasn’t easy, and it meant that his newly born brother spent just over the first month of his life living in the private hospital room we had come to call home.

As a family, we entered the most difficult time of our lives. But out of this darkness, came light. Our experience was a wakeup call, and it had a profoundly transformative effect. We left the hospital with a steely determination, a focus on being positive and a new outlook on life.

Coming to terms with my son’s diagnosis wasn’t easy, and, of course, I would wish it away in a heartbeat if I could. However, rather than dwell on the limitations that Crohn’s could present, I choose to focus on the positive lessons that our experience has brought into my life.

1. Don’t underestimate the strength you have.

If someone had sat me down and explained all the things I would go through with my son in order to get his diagnosis, I would have said, “I just can’t do that.” During my son’s flare, I had to dig deeper than I imagined possible, but I connected with physical and psychological strength I didn’t know I had.

My son’s need for me awakened a primal and protective instinct. Caring for a child with a chronic illness can be challenging, and I still draw upon this powerful energy source now when things get tough. It’s comforting to know that no matter what Crohn’s throws at us, I have the energy to keep positive, deal with it and not let it drag us down.

2. People are innately good.

During the tough times, I was always reminded of people’s capacity for kindness. The support our family and friends offered was phenomenal and it helped to keep us going. We were so incredibly grateful for the practical support (like doing our washing), the emotional support we received during visits and the messages that let us know people were thinking of us and we weren’t alone.

Bonds between our family and close friends were strengthened beyond measure, and we realized how fortunate we are to be surrounded by amazing people. I continue to benefit from this kindness as people around me can see and sense when things getting tough and help pick me up and get me back on the right track.

3. Crohnies are strong.

After my son’s diagnosis, I connected to other members of the Inflammatory Bowel Disease (IBD) community through Crohn’s and Colitis UK, The Mighty and people in my local community who also have an IBD diagnosis. I was grateful as people I knew came forward and shared their diagnosis with me. The IBD community is incredibly supportive, and I feel strengthened knowing we’re not alone. Their stories keep me positive and provide countless role models to inspire my son as he grows up.

I’m also in awe of my son — his physical and emotional resilience never cease to amaze me. He meets the challenges of IBD head on and manages his symptoms with maturity well beyond his years. He has no idea of just how remarkable he is and so it’s my job to show him.

4. Live in the moment.

Before my son’s diagnosis, I was a planner. I was cautious and I overthought things. Living with the uncertainty of IBD has taught me to be present. I don’t know what the future might bring, and I can’t control what will happen. I can, however, make the most of every moment I have now. Life is just too short. If an opportunity presents itself, then I just go with it. I am committed to fitting as many positive experiences as I can for my family and making the most of each moment we have together. Things I used to take for granted like a walk in the park have a new meaning to me because if my son gets ill again, that simple pleasure will be taken away from us again for a while. I have learned to find joy in the “mundane” and not take anything for granted.

5. Love is an amazing healer.

People’s kindness not only helped me through the tough times in hospital, it also had a
profound effect on my son. The handmade cards from his friends and the visits from family members lifted his spirits immeasurably and helped him to face the treatments he found distressing. I could see how these gestures gave him more fight and reminded him that there was an end to what he was facing. It was just a matter of time before he was home spending time with his friends who love him.

One of the most unexpected and remarkable things I witnessed in hospital was the bond between my son and his newborn brother. Even though he was a few weeks old, my younger son was incredibly tuned into his brother. His smiles lifted sprits when they were low, and he offered comfort to his brother and his parents. Even now he shows an exceptional level of empathy towards his brother, and they look to each other for support. The bond they have developed is astounding, and I know that they will always be there for each other.

Lead photo source: Thinkstock Images

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When I Got So Used to Feeling 'a Bit Sick' I Didn't Realize How Sick I Was

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“You look great!”

Um, thanks.

I have been in the hospital a number of times before due to Crohn’s disease flare-ups over the past 18 years. Sometimes I was so sick, I was unable to walk due to pain or weakness, or losing blood, but never have I had to face the surgeon’s knife. That would never happen to me! No way! That only happens to other people who are really sick! I’ll never get to that point! I thought. Until I did.

The end of 2014 I was doing a show, and experienced terrific pain during a performance. I thought I may have pulled a muscle, and I thought the pain would go, but it only got worse. I ended up in the emergency room; lo and behold, it was Crohn’s.

Even after 18 years, it always took me by surprise when I would have a flare.

Apparently there was a small hole in my large intestine that the doctors managed to heal with treatment in the hospital for two weeks, avoiding surgery.

I left the hospital in November 2014, and started to feel better! So, at the end of the year, I spent some time in the States and came back to Australia beginning of 2015 — carrying on with work and life, all going well.

Funny thing is, when you’re feeling well, you tend to forget you have Crohn’s. And this is where the danger lies, I believe. Because, when you have Crohn’s, even if you’re “feeling well,” that doesn’t necessarily mean you are.

I was back in the hospital again in June 2015, booked in for another colonoscopy. As I was going in for the procedure, I bumped into my previous gastroenterologist. He said, “Hello Sylvia! How are you going?” I said, “Not too bad (why do us Aussies always under-play things?), I’m having a bit of a flare, so am going in for a colonoscopy.” He said, “OK! Well, you look great! A bit thin, but you look great!”

I said, “Thanks.”

A Crohn’s point. You can look fabulous, but can be feeling far from it. Please don’t judge a book by its cover, friends!

I went in for the colonoscopy and my new specialist gave me the results: “Your intestines are so ruptured, we couldn’t even get the camera through, we don’t even know how you’re walking. We need to operate right away because this is potentially life threatening.”

And there it began. I was one of those people who was apparently so sick, they needed to perform a resection surgery (removing a part of the large intestine). Which turned into two surgeries, which turned into three surgeries, removing all of my large intestine, with a temporary ileostomy — the dreaded bag.

This, by the way, is not standard.

Apparently a resection surgery, is a resection surgery. And that’s it. You’re in, you’re out, you go home.

My first surgery, however, broke away in my body after a week of recovery. Truly horrific, and have never been in so much pain and have never felt so frightened in my life. The surgeons had to do an emergency second operation, removing the remainder of my large intestine, and that’s where I ended up with the ileostomy — the bag. Thankfully the ileostomy was only temporary. This sort of major surgical complication only ever happened to the surgeon once before. Also, during my six-week stay in the hospital (which was only meant to be two weeks max) there were further complications. In fact, medical students came around to have a look at me, as a study on “what can go wrong when operating on Crohn’s patients.” Great. They were, by the way, quite strapping doctors, so that was a highlight. I, however, wasn’t in my best form, to say the least. I was looking exactly as I was feeling.

Crohn’s can be very tricky, in a number of ways. It can even fool the patient. You may look great! Doctors can even say you look great! You may think you’re feeling great! And that’s hard to monitor, because with chronic illness, you can become so accustomed to being run down, and experiencing pain on a regular basis, that your tolerance for pain is actually quite high compared to others not experiencing chronic illness.

Thankfully now one year later, I am doing well. I’m on a new medication, Humira, which has helped put the disease into remission. And, I hope to continue to stay in remission. And, I know I will never let myself get to that point ever again. The moment there is a hint of anything, I am straight to the doctor.

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Sylvia before and after her surgery.

So, my learning from all of this is — take this disease incredibly seriously. I don’t think I ever really did, not to the extent I should have. Being a “bit sick,” for me, was a norm. Until now. Please, friends with Crohn’s, and family members of those with Crohn’s, don’t judge the disease from how you may look or feel, even if you feel great! Monitor yourself consistently with doctors, specialists, talk about Crohn’s, go to support groups. Ask questions, share. This disease is a very real thing. And, it can take you completely off guard. Lord knows it did with me.

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What a Day of Decisions Looks Like for Someone With Crohn’s Disease

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Today began like every other day.

Savoring my one and only cup of coffee for the day, I look over my to-do list. I love the saying, “First things first,” and for those of us with Crohn’s disease, that often means: Do I shower today or throw on a baseball cap? Do I walk or drive? Do I food shop or make do, wear makeup or not… exactly how many spoons do I have today?

For those of you who are not familiar with the “Spoon Theory,” let me briefly explain. Christine Miserandino, a woman with a chronic illness, was attempting to explain to her friend about the consistent fatigue that goes hand in hand with many chronic illnesses (it certainly does with Crohn’s). She handed her friend 12 spoons and said this represents all your available energy for the day. Oh and by the way, getting out of bed uses one spoon, so now you have 11 left.

If you’re healthy, think about your day — do you ever have to think ahead about what you can or cannot do? For example, do you ever have to decide on little things like: Do I shower? Should I just throw on a cotton summer dress so there is no pressure on my belly? Are my hands too sore to manipulate buttons? Can I get to the pharmacy to pick up my medications? If I have to take a pain pill, I don’t drive. Can I get a friend to take me to the pharmacy? What if I get there and start feeling bad?

I wonder how long can I sit at my computer today before the pain becomes too much and I need to lie down? Since I live on disability, making jewelry brings in my money for prescriptions. If I can’t sit, I can’t make jewelry. Plus, making jewelry creates a whole other set of circumstances, such as, do I just do repairs or do I feel good enough to get out my metal-smithing gear? Should I make lunch or just drink something?

So many things to consider that a healthy person may not give a second thought to. It’s your routine. The only routine for me is routine blood work.

Well as for today, I showered and threw on my summer dress since my belly could not handle the pressure of pants. I nixed the food shopping and medication pick-up; too tired. I managed to work in my jewelry studio for about an hour. The pain began to take over, as did the nausea, so do I push through and pay for it later, or do I take care of my body and heed its red flags? Not wanting to pay for it tomorrow, I chose to lie down, get a cool glass of red zinger iced tea and chill.

Three spoons left. And it’s a good day.

Image via Thinkstock Images

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