Two kids, one a hospital patient and one a visitor, sitting on hospital bed, looking at laptop

How to Support a Mom or Dad Caring for a Child With Serious Illness

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May 2015 was the worst Mother’s Day and birthday of my life. Watching over my desperately ill younger son lying in a hospital bed with a maze of tubes coming out of his nose and arm. There is nothing more painful for me than watching my child in pain and worrying about how to make him well. Crohn’s disease spread inflammation throughout my son’s digestive track. We lived in two children’s hospitals for eight months straight, taking away our sense of day and night in a timezone of its own. I slept on a “bench” they euphemistically called a sofa every night, afraid to leave him for long.

He is doing much better now, stable after two years searching for the right way to control his disease. I am so grateful for every small and large gesture our family and friends made to help us. I will always remember those special moments. During the five and a half months we were in a children’s hospital out of state, my mother and stepfather came to visit us almost every week to give me some time to rest or take a walk, take me out for dinner, and keep us stocked with groceries and other necessities. Friends and other family made visits that cheered us, and sent special gifts, cards, and sweet, encouraging texts and Facebook messages.

This season of Mother’s Day and Father’s Day is such a great opportunity to support and cheer a mom or dad whose child has a serious illness or complex medical conditions. Parents of sick kids dealing with long hospitalizations often have to call on superhuman inner strength and stamina. Pushing back their fear and worry through endless sleepless nights to do their best to care for and nurture their child.

Sometimes it is hard to know what to say or do when someone you care about is struggling with family illness. It is so difficult to see a child or teen in pain and to try to think of what you can do to comfort and help parent and child. But not doing anything because you’re not sure what to say can be a lost opportunity to make a difference.

What you can do:

Share short, simple supportive comments appropriate to your relationship with the mom or dad like, “I’m here for you.” Listen more than talk, and try to avoid convenient sayings like, “Everything happens for a reason.” (I don’t believe my son’s pain and illness happened for a reason.) Or “It will be all right” because honestly, often in these situations we don’t know if it will be all right.

Here are ideas from my experiences. Everyone’s situation is different, so tailor to what you know of theirs, what you think is important to them and your level of relationship.

Make a specific offer of how you’d like to help. Rather than more general gestures like “How can I help?” offer specific examples of what you would like to do. This takes the pressure off the mom to think of what they might be comfortable requesting. I often felt funny asking for help, especially in the beginning. I didn’t want to inconvenience anyone, and I was in the mode of powering through doing everything myself.

Offer help with a specific example or two that will make it easier for the parent to accept like, “I would love to do something to help you. Which night this week would be good for me to bring dinner to you in the hospital?” Or “It would mean so much to me to help. Which afternoon this week would be good for me to come to the hospital for three hours and hang out with your son while you take a nap or do whatever you want?”

Special ways you can give support — Even with a great hospital staff, parents are often nervous about leaving their child for a long break. They’re worried about their child’s health situation or spirits, or that their child will need something busy staff won’t be able to give. So offering to stay with their son/daughter while they take a few hours off can be priceless. Or if you have multiple people visiting with you, one person could stay with the child while the other takes the parent out. Taking care of everything, such as driving and taking the parent out to dinner, to get the parent’s hair done, or for a massage. You could also entertain a healthy sibling to give them time away from the hospital doing something fun.

Hospital food gets old fast and isn’t usually very healthy. You could find out if they have a mini refrigerator in the hospital room. If they don’t, ask the hospital about arranging for one. Then you could bring cut-up or easy-to-eat fruits and vegetables, snacks, and other favorite foods. See if there are stores like Trader Joe’s near the hospital where you can pick up healthy snacks and treats. Ask about allergies and preferences for both the parents and children. Their sick child may have special diet limitations, but it’s nice to ask if you can bring anything for them. You could also organize a food delivery rotation among their friends and family using Google Docs or a site like LotsaHelpingHands.com.

Being a caregiver can be an emotional roller coaster. A heartfelt compliment can feel so special, such as, “You’re an amazing mom. I admire you so much. You’re doing everything a person can.”

Here are other useful gift ideas:

  • Great quality travel coffee mug
  • Gift card to a coffee shop, cafe or bookstore in walking distance of the hospital
  • Bring some new, comfortable, flexible clothes like a new shirt or hoodie with full zipper
  • A gift set with sample sizes of high-quality body lotion, shampoo, conditioner and other toiletries
  • Dark chocolate covered espresso beans or dark chocolate bars
  • A funny book or mindless fiction
  • iTunes or Amazon gift card

Day in and day out parents do for everyone else. Thank you for thinking about how you can brighten their day. Believe me, it will mean so much to them.

A version of this story was originally published on Gooseling.com.

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Why We're Raising Awareness on World IBD Day

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Awareness days… There are so many of them, but do they actually achieve anything?

“Why is World IBD Day important to you?” we asked a few members of the #IBDSuperHeroes group:

Sahara Fleetwood-Beresford:

Does it really raise awareness? Should we bother making the effort?

Yes! If just one person sits up and takes notice of the awareness posts, then it has raised awareness. If that one person learned one IBD symptom, that could be the difference between a long hard struggle for diagnosis and having the knowledge to say, “Actually, this is worth investigating.” It may help them personally or it may help someone they know, if that person mentions that symptom in future. It could make a difference to just one person. One person is enough. One person is worth it!

Do awareness days only matter to those that have the condition?

No, I can bet the day also matters to the people who care about those with the condition. The people who have had to watch them struggle, knowing there is nothing they can do. It’s tough for them too, and it gives them an opportunity to show their support.

Does raising awareness fall on people who aren’t listening?

In all honesty, often it will, but there are those willing to listen, and as I said above, just one person listening could be enough to make a difference.

That’s what awareness days should be about. Just the tiniest possibility that you could make a difference should be enough. The tiniest possibility that you could ease someone’s struggle.

Our #IBDSuperHeroes are our biggest asset. They fight for what they believe in, as all true heroes should. It’s not about complaining and telling the world what a hard time we’ve had, but a time for pride, and sometimes merely having survived is enough!

Corinne Vanessa Burns:

World IBD Day is extremely important to me. It’s a day on which we can all get together and spread awareness of IBD, or inflammatory bowel diseases: Crohn’s disease and ulcerative colitis.

There’s a huge proportion of people in the UK and across the world living with these potentially life-threatening conditions. Unfortunately not many people like to talk about poo… There, I said it! Wasn’t so bad, was it? We all do it! Yet the subject comes with massive taboo.

I have a J-pouch due to my struggles with ulcerative colitis, and at the time of my surgery in 2000, I knew nothing about these diseases. It was a very scary time indeed.

The result of nobody wanting to talk about toilet habits means that people struggling with these diseases with symptoms such as diarrhea, weight loss, bleeding, severe pain and extreme fatigue are left feeling isolated and embarrassed and not getting the support they need. We need to speak out!

Not only will talking about IBD on World IBD Day help spread awareness, but it is also an opportunity to raise some money for Cure Crohn’s and Colitis who donate 100 percent of the money donated to fund much-needed medical research to find a cure for inflammatory bowel disease.

Lizzie Smith (she chose the poetry route instead):

World IBD day is a celebration of life’s creation.
A creation of unique individuals united to become visible
A recognition of all IBDSuperHero conditions
From admissions to remission, flares and healthcare, to surviving and thriving
Standing united, we’re breaking the silence and no longer frightened
We are not alone and for that one day in time
We fight to raise awareness and show we are fearless
So no need to grab your cape or be afraid
We are all IBDSuperheroes.
Wear purple and show the world our IBD is universal
19th May 2017 let’s show them we can be seen.

Jenna Bahara:

I was 9 years old when I first became very selective about my food. This was blamed on eating disorders which is actually a pretty common story. I was losing a lot of weight and was fatigued all of the time. My parents force-fed me and regularly told me off.

I began losing blood but was too afraid to tell anyone as I already felt like such an inconvenience. I started throwing away school lunch, knowing if I were found out I’d be grounded, further isolating me from friends, but I needed so badly to avoid the cramps and the pain.

If only I’d realized the relevance of losing weight and the lack of appetite, then maybe I wouldn’t have feared speaking out. If only the doctor had taken time to do some tests or taken me seriously when I said my tummy didn’t just hurt, it was like I’d swallowed a thousand nails and someone was hammering them in. Maybe I could have avoided lifesaving surgery and thousands of emergency visits and insurmountable pain and stress.

My mother took me to a local hospital after I rushed to the bathroom after eating. She thought I hadn’t flushed the toilet because I’d been sick, but instead she saw the pints of blood I was losing. I was very thin, and the blood loss wasn’t normal. Eventually, someone listened. That day, she was told I had 30 minutes left to live as my bowel had so badly disintegrated and gotten stuck to my other organs. They suspected bowel cancer. I was taken to a children’s hospital where I was put in a cancer ward and underwent a major, 10-hour surgery. My bowel was now on the outside of my body, I had major scarring and I was left pooping into a bag attached to my stomach! I had an ileostomy, which was due to my new diagnosis of ulcerative colitis (not cancer). I still had to have radio therapy and was fed through a tube. I had to learn how to not only eat again, but walk! I had to accept that I was now living life with a disability. More surgery, lifetime medication, fatigue, insomnia, joint pain and arthritis were all in the cards for my future.

IBD doesn’t just affect the bowel, it affects the whole body and mind. There’s no cure and there’s definitely not enough awareness. That’s why awareness days like World IBD Day are important. To give people better knowledge so they don’t have the kind of diagnosis I did. If you experience any of the above symptoms, please consult your GP! Don’t just accept regular meds and being brushed off. Fight to get tested! It may feel like an inconvenience at the time but it may also stop IBD from being an inconvenience years later.

We raise awareness of IBD so that people know the signs and might be able to get diagnosed early, which will hopefully save people a lot of pain and a long struggle!

Happy World IBD Day to all!

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7 Reasons I'm Grateful for My IBD

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A year and a half ago, I would never in a million years have imagined writing this article. It was then, over on my blog, I posted “My Open Letter to Crohn’s Disease.” I can remember that at the time of writing it, there was one emotion that seemed to dominate me at the time: hopelessness. I felt completely and utterly hopeless at that moment of pressing the publish button – like I was just trapped in a tunnel with no way out.

Hopelessness was a new emotion for me – previously my response to IBD had been largely anger and frustration. When I was diagnosed, I went through all the classic emotional responses, and anger was one that stayed with me for a long time. I was angry at my body for putting me through this and, even more prominently, I was angry at everybody else who wasn’t going through this but thought they had it bad. The people who moaned about their weight, who moaned about how hard it was on Weight Watchers or who moaned about hangovers after drinking all night. In other words, I was angry at the people around me who were living their lives as usual – as they should be.

Looking back, almost 18 months later, I still don’t really think I ever had that lightbulb moment – a day when I stopped feeling hopeless, stopped feeling angry and started to feel…well, grateful. But with World IBD Day approaching on May 19th and me turning to my laptop to pour out emotion again, I can barely recognize the emotions I used to feel. While I could never really say if my life is truly better with IBD, it seems only right to acknowledge the positives and how this disease has changed my life.

1. I finally realized what was truly important. In my case: my family, my friends, my husband and my dogs. That’s pretty much it if I’m honest. I stopped caring that I didn’t have a million friends or about trying to impress others. I took stock of how lucky I was to have so many people in my life who do care.

2. I changed my career. As a teacher, I was always desperate to contemplate my career prospects and what lay ahead. Yet after my diagnosis, I no longer found myself stressed about the things that once bothered me: marking, the pupils’ progress and being the absolute best. I decided to change to being a part-time supply teacher to allow me to focus on what I did enjoy without the stress of a permanent role. I now do this a few days a week and spend the rest of the time focusing on my writing and nutritional therapy practice (more on that in a moment).

3. I fulfilled my dream of writing a book. I have always loved nothing more than writing but I know I would never in a million years have written a book if it wasn’t for my Crohn’s disease. Despite my passion for it, I never truly believed in myself as a writer until I started my blog, “A Balanced Belly,” and began writing about my journey. This blog later turned into a book (“Managing IBD: A Balanced Approach to Inflammatory Bowel Disease”). You know on Gilmore Girls when Rory writes the story and says it just flows out of her? That’s how I felt about my book. In fact, I don’t quite believe it was a book as it was just me chatting on my laptop for a couple of months. They say every writer has a story in them, and perhaps, in a warped, strange way it took getting diagnosed with this disease to find mine. (Why I couldn’t bloody just write a romance novel, I don’t know!)

4. I changed my relationship with food. Pre-diagnosis I had a very emotional relationship with food: if I was sad, I rewarded myself with junk, even though I knew it made me feel terrible. Post-diagnosis, I decided I wanted to learn about food. Not to find a cure or come off medication, but to find a way to understand what was happening in my body. Three years later I finished my Nutritional Therapy qualification. Understanding how food works has helped me know how to best support my body when in a flare. I still take medication but food makes a massive difference in my overall well-being.

5. I feel valued. The IBD community has been amazingly welcoming and supportive of my blog. Nothing feels better than an email of gratitude or a Tweet saying that my article prompted a reader to contact their doctor or take action. I have always felt strongly that we each have a “purpose” and I feel that in some strange way, this may be mine.

6. I have made some amazing friends. The thought of making friends online seemed an odd prospect before diagnosis. But it’s crazy how the internet can bring you together with fellow fighters. Through social media I have made some amazing friends and met some truly lovely people. You are never alone in this community.

7. I never ever take my health for granted. I still celebrate each week of feeling well and each positive blood test. When you have a chronic condition, you truly make the most of each healthy period: whether it’s a day, a week or hopefully years to come!

I hope those reading this don’t for one second feel I am not accurately portraying the real realities of living with inflammatory bowel disease (IBD). Life is undeniably hard and each week we read of people losing jobs, reacting to meds and dealing with pain. However, we fail to sometimes to talk about the strength and determination that living with this illness gives us. And while I can never say that I prefer life with Crohn’s disease, I am still incredibly grateful for the person it has made me.

Jenna

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I Am Grateful I Have Inflammatory Bowel Disease

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Who would have thought you could make some really great friends because you have a chronic illness?

Well that’s what has happened to me.

After months, maybe years of trying to be “normal,” I found myself in a room full of people who saw my struggle. I didn’t even have to say any words. Sometimes it’s enough to just sit back, watch, and listen.

I saw people just starting out on their journey and understood the struggles that will come.

I saw people who have struggled for years that have grown strong and they’re still getting stronger.

I saw people who can’t fight anymore, that want to give up because they are really, desperately tired.

I saw people who are a true inspiration and I know that they will make a difference in my life.

I feel lucky to have inflammatory bowel disease (IBD). There, I said it. Had I not been ill I would never have come across these wonderful and inspiring people.

I would never have learnt who my true friends are, I would never have realized how much my family loves me. And, I’m pretty certain that had I not been ill, I would have continued to drink an unhealthy amount. God only knows where I would be now.

I have lost a lot of “friends” who resented my moaning, my letting them down because, “I just really don’t feel like it tonight.”

This doesn’t upset me, quite the opposite in fact. I have separated the wheat from the chaff so to speak, and it feels good. I know that the people that I make time for now are deserving of it and I am completely uninterested in those that aren’t. My mum says I’m rude, I just think I’m no fake and will not pretend to be interested in someone’s life when I’m really not.

It takes a lot for me to let people in now. This may be seen as a negative to some, but I believe that the people who really want to be in your life will stick around and keep hammering at those barriers until they are mere bumps in the road. In my mind, these are the people that have earned my loyalty.

The friends I have now may be few and far between but they are real.

Having been so ill and having been in so much pain makes me grateful for every day that I can physically get out of bed. It doesn’t matter how many painkillers I have to take to make it possible for me to get up and carry on. What matters is that I take them and I do it.

I am stronger now than I have ever been. I know what’s important and I know what isn’t. I know what I want and I won’t settle for anything less.

I had a “please wipe feet here” sign on my forehead for quite some time, but I have taken it down, incinerated it, and flushed the ashes down the toilet!

I have my faults, I know this. But, all-in-all, I am good person and knowing that makes me more confident in the decisions I make which in turn makes me happy.

Had I not been ill, I do not think I would have been as happy as I am now or as comfortable in my own skin. I wouldn’t have met the many people online that help me on a daily basis without even knowing it. For many years I felt like I was stranded and alone on an island, but now I have company.

I get up every day and I am grateful I can do that.

I go to work and I am grateful that I have a job.

On the way I wear my headphones and I sing like no one can hear me and I’m grateful that I am happy enough to do that.

I go to the shops on the way home and I am grateful that I can afford food.

I get home and I am grateful that I have one.

I log into Facebook, respond to a few notifications send a few texts and I am grateful for every person that is on the other end.

I get in the bath and I am grateful for my body.

I change my bag and I am grateful that for two months I have had no pain.

I dry my hair and I’m grateful it’s getting healthier.

I dance around the bedroom and I’m grateful that today, I have the energy.

I am grateful because I have IBD. Had I not been ill, it’s safe to say that I would still be a shit.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Dating With Inflammatory Bowel Disease

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It has been bought to my attention over the last few years, just how hard many inflammatory bowel disease (IBD) patients find the whole dating scene.

When you first begin dating someone new, essentially that person is a still a stranger. How much of your soul do you need to bare before you even know if this has any sustainability?

Dating is hard enough for healthy people, right? Wondering, “Does he like me? Did he mean to touch me then? In fact, do I even like him? His nose is a bit big…”

I have a j-pouch, which is difficult enough to explain, “No, unfortunately I am not available for a passionate encounter this evening, as I have vast quantity of medication to take before bed. I also don’t want to have to get up and go for a poop in your toilet in the middle of the night, or worse still, sleep through the ‘getting up’ part.”

So how do we, as “IBDers,” “Ostomates,” “Pouchies” tackle the subject?

Personally, I am more of cards on the table right from the very start kind of girl. Living with IBD means that I have limitations; I often don’t feel like going out after being at work all day.

It is small things like this that could affect even the early on stages of dating that I like to get off my chest sooner rather than later. That way, it will soon become clear apparent whether there is any compatibility. These may be small things, but they occur regularly and could present a problem in terms of the outlook for the relationship.

If you want to buy me food, I am well up for that. In fact, you may now be well on your way to becoming my favorite human, but make it a takeaway so I can eat in my PJs at home, OK?

Cinema – no problem! Just make sure you book me an aisle seat so I can escape quickly if the need arises.

Living with a colostomy bag or having hefty scars on your body should not be an issue, but personally I would rather these be known from the start, because you will soon find out whether your could be “Mr. or Mrs. Right” is in fact, “Mr. or Mrs. Shallow,” and nobody should waste time on them.

Of course, I have had my, “Who is going to want me now?!” meltdowns, but I am a great believer in not settling for anything less than you deserve. I can tell you with 100 percent confidence that anybody who is shallow enough not to want you because you have an ileostomy, does not deserve you. You need someone that see’s past that and see’s who you really are and what makes you tick, and that connects with you on a deeper level than, “You have a great butt.”

I once saw an advertisement on Facebook promoting a dating site specifically for people with IBD. My initial reaction was, “Why the hell should I only be allowed to date people with the same disease? That is completely ridiculous, and will just serve as a constant reminder that my body is knackered and on a desperate search not be alone I’ve had to resort to just looking for others with IBD.”

After my initial outburst I began thinking about it more rationally. In no way do I believe that people with IBD should feel they have to date other people with IBD, but it would sure save a lot of explaining. There would be no need for awkward explanations about toilet trips and trying to explain that fatigue is not the same as when you are just tired.

The only thing that bothers me about having a relationship coupled with IBD is that I have an uncontrollable feeling of guilt. Entering into a relationship knowing that I will be sick, moody, and and putting someone else through it, when in reality it’s not their problem, is a great source of guilt. But, if they date you, they date all of you, IBD and everything.

The thing about dating is, there are no rules. I think we’re all just winging it really, but being yourself will mean that you have a clearer image of who can fit in to your life, and more importantly, who will help carry your baggage.

Just keep the faith, and never let anyone make you feel like you aren’t enough, because you are. Don’t settle for second best and go with your gut. (Excuse the pun.)

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Being Judged By Others Who Cannot 'See' My IBD

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Many people nowadays see disability as being in a wheelchair, not having a limb or being deaf or blind. When people look at me they see a young, skinny girl who looks perfectly healthy apart from the pale complexion.

If you saw me at college you’d think I was having a normal day like any other teenager; however, I am far from your average teenager. I have an extreme illness from time to time which means I need to rush to the toilet to sometimes have diarrhea or squirm in pain while keeping a smile on my face. When people hear, smell or see me going into public toilets, they probably think I am hungover. I am not. It is a normal day for me and I am trying to forget people’s opinions as I slam the cubicle door behind me, getting my pants down just in time to relieve myself of the burning need to get rid of the toxic waste in my body. People forget that it’s just a toilet and that’s why they are there. You wouldn’t tell a child to stop (excuse the phrase) “having a poo” if they were desperate. People forget this is my body functioning in its own way in order to survive. The only difference is my day gets harder when I keep running to the toilet and people walk up to me and tell me to be ashamed of myself for using a toilet meant for people with disabilities. I am eligible for a disabled car parking space but without a doubt people would wonder why I would be allowed that.

Many people are so judgmental nowadays and I struggle to try to brush it off. Sometimes I get cramps when I get upset about what they could possibly be thinking when I leave the public cubicle. My overall appearance probably doesn’t help since I have ombre hair and wear a lot of make-up. People think it’s OK to stare me down as I walk out of the ladies’ room. I don’t enjoy attention, in case you haven’t guessed.

The only thing that keeps me going is knowing I am not alone, and I have learned recently that I am not. Mental health definitely becomes a challenge when you have a chronic illness like this. You struggle to cope so much that you hurt yourself by eating something you shouldn’t and so it leads to another day in pain because you wanted a little sweet taste of the past. I am still trying to find foods that will agree with my stomach so I can feel happy with myself for making it work rather than giving up and splurging on chocolate. The worst thing I can eat is chocolate and damn, I miss it.

One of the hardest parts of having a invisible illness is when people think they understand what you are going through. “You should try not to stay out of college because that isn’t good for finding jobs and things like that.” You think I don’t know that? I lost a job to this disease. I hate it when people think their opinion matters in the grand scheme of my life – my life is none of their business! Think twice before you speak about something you know nothing about.

The questions people should be asking nowadays are things like, “Do you feel well enough to leave the house with a friend or family member?” Most of the time the answer is yes, but some days I lie on the couch and run to the toilet constantly. One thing I never get tired of is food and the constant need to consume. I feel better when I can motivate myself to walk to Morrison’s because they have the toilet signs that say, “Not every disability is visible.” Then I can go buy food to take back home and stop at a local café to calm myself down and pick my energy back up for the short walk home.

Having this illness is frustrating as someone who used to be into athletics and staying well. I have always loved sports and I wish people could see that people are the way they are, but that doesn’t mean they were always the same person they are now. Why do people have to make up a story in their head and confront a stranger with their opinion on what they think is happening? It upsets me that people don’t think about what a person might be going through. I’m an approachable person who will happily show you my IBD card and my radar key. Don’t judge me – underneath the face of a young woman is someone who is sick but also a fighter.

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