People With IBD Deserve to Be Cured, Not 'Managed'

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As is often the case when you have a chronic illness, people assume that once you’re receiving treatment for your condition, you are on the mend.

I have inflammatory bowel disease, a chronic and recurring condition. I was diagnosed 10 years ago and have only ever been medication-free for a few months at a time, usually following surgery. Contrary to popular belief, taking medication doesn’t mean that I now feel well. The medications themselves often have side effects of their own, that you may even find you need more medication to treat! So the circle continues… IBD presents itself in numerous different ways, and differs from person to person, so while one individual may find that their symptoms are easily managed with medication, another may spend years going from treatment option to treatment option, and ultimately find that there is nothing to alleviate all of their symptoms.

Many charities exist for people with Crohn’s and ulcerative colitis and they cover a wide range of offerings between them, from raising awareness to personal grants and funding medical research to ultimately find a cure. I am very active within the IBD community and often contribute to groups, as well as running #IBDSuperHeroes, which is predominantly a fundraising campaign to find a cure but also focuses on raising awareness of IBD amongst the masses.

It is important to help those with no knowledge of IBD gain a better understanding of the condition, but you will often find that if it doesn’t directly affect someone, they have very little interest in being educated about it. I would love for the world to understand that IBD has many extra-intestinal manifestations, and is not just a disease that revolves around stomach cramps and toilet trips. Joint pain and fatigue are a major struggle for me on a daily basis, regardless of whether I am having stomach related flare symptoms. I consider my IBD to be managed, in the sense that I “manage.” I work 30 hours a week, my bills are paid, my dogs are fed and generally my house doesn’t resemble a pigsty too much. The reality is, I don’t have much of a social life because more often than not, I am asleep!

It has become clear during the last few years that many people who fundraise for Crohn’s and colitis charities often don’t actually know where their money goes. They assume that fundraising generally means that they are contributing to finding a cure for their condition, when in reality, I discovered that one large charity in the UK actually only invested a small percentage of donations in 2015 to research. I would advise anyone, looking to do some fundraising, to research a few charities in advance, and see which best align with their end goal.

Ultimately, my wish is for a cure. When we get there (I say “when” because I believe it to be true), the need for awareness-raising will be non-existent. For me and many others I know, a cure will not make us better — it certainly will not return my colon — but knowing that future generations will at some point not have to suffer the way that I and the people I have come to know have is where my end goal lies.

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Why I'm Talking About My Worst Day for IBD Awareness

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My worst day with IBD:

It is 2014, the day before surgery to get my ostomy – one of my next three J-Pouch surgeries. It’s late. I should be resting but I can’t. I’ve been up all night crying on the bathroom floor. It’s dark. Don’t get me wrong, I’m sure my apartment is well-lit, every light in the house is on, but I fear I’m losing consciousness.

You see, for the law week I’ve had a fever. I’ve been bleeding – I’m always bleeding. I live in pain but today the pain is much worse; this week the pain has been much worse. I know what it is: I have an infection. I’ve been on a high dose of steroids and my immune system has been greatly compromised. I barely recognize the face I see in the mirror.

I’m not telling my surgeon. I’m not telling my doctors. It’s late. I’m bleeding. I’m tired of bleeding. If I go to the hospital tonight, they won’t let me have surgery tomorrow morning. Surgery is my only escape from this life. It’s late. I’m bleeding. Hours pass, it’s getting hot. Should I call my grandma? No. She’ll take me to the hospital. I can’t go back there. Not before surgery.

It’s late. I’m bleeding. I take a shower, but suddenly I’m dizzy. I can barely stand up by myself. I decide to sit down in the tub and let the water cover my body.

It’s late. I’m bleeding. Dry tears stamped to my face as I pray to God to take the pain away because I cannot miss surgery tomorrow.

It’s late. I’m still bleeding. I try to go to bed but I’m hurting too bad. By this point I can barely sit and now I’m leaking. I get to the hospital. I’m taken back fast. The nurse lets me know they’ll have to sedate me for the procedure and suggests I call my family. I call my grandmother and tell her, “Grandma, I’m at Carolina Medical, the nurses want you here…” The nurse cuts me off. “Did you say Carolina Medical? Honey, you’re at Presbyterian.”

What happened after that is fuzzy. My surgeon came in the next day to visit my room, sat down in the rocking chair, looked me in my eyes and said, “You know I can’t operate, right?” I cried the rest of the day.

Let’s raise awareness and cure IBD.

#WorldIBDDay #Crohns #Colitis #UlcerativeColitis #Spoonie #InflammatoryBowelDisease

Follow this journey on More Spoons.

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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.

Follow this journey on Social Media, IBD and Me.

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