One day, you will be able to live again.

Dear readers,

I know this is not my regular upload schedule but I am in robotics right now and I was just inspired to write something. This post is something I needed two months ago, so to anyone going through the terrible storm of chronic illness, or just want to know that things will get better, please keep reading.

I recently came across this picture while looking through my photos:

This was exactly two months ago. Here is a picture that I took today:

When I saw the first picture, I was overwhelmed. I was washed with emotions of remembering a time where I thought my goals for the next year would never come true. In this picture, I was smiling, but my throat itched, my stomach hurt, and I had a heavy, heavy heart. This was towards the end of a seven month journey towards remission. Seven months of pain, broken promises, starvation, tears, and overall brokenness. Everyone kept telling me, “this will get better,” and “you can do this,” but after awhile you don’t listen anymore. The harsh reality of chronic illnesses is that you don’t know when it will stop, and I still don’t know when Crohn’s disease will sneak up behind me again. Little did I know that in a little less than a week, I would have a surgery that would put me in remission.

One day soon, I would be able to live my life again.

If I were told that two months ago, my heart would fill with doubt. I would remember all the doctor’s promises that were broken. But it’s true. Please believe me when I say that one day, you will be able to live your life again.

Today, two months after this picture was taken, I am at my dream school. I play volleyball, like I used to. My biggest problems are drama and parent troubles, not wondering if I will be able to eat tomorrow. I have a life. I have a life. And you will too.

One day, you will be able to live again.

Lainey

If you want to talk, email me at crohnsandcolitisus@gmail.com or DM me through instagram @crohnsandcolitisus

I am here for you. You can do this 💜

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The illusion of me

There is always an illusion
In everybody’s life
But with
IBD
the illusion
Is inside.
You deceive yourself
But you’re still confused
Like a grandma who can’t find her shoes.
You sneaky little girl
Why do you trick yourself?
Why do you let this time pass?
Why do you attack?

The illusion of time.
You get diagnosed
And in no time you will be better.
Until time gets s l o w e r,
Hospital stays get l o n g e r,
And the struggles get h a r d e r.
Then a year has passed
And you’re still not better;
And this is the illusion of time.

The illusion of attack.
She tricks you that
Your body is being attacked
But
Really she is the attacker
Your body is the attacker
You
Are
The
Attacker.
And you can’t stop attacking;
And this is the illusion of attack.

Tick Tock
There’s the time again
Time is getting away
Please
Stop
Attacking.
Your immune system
Will continue to attack
As time passes
Until you aren’t really living anymore.
Your life is attack and defense
A war against yourself,
Caused by yourself,
Every man for himself.
This is war;
This is the illusion of me.

4 OCD Misconceptions

4 Misconceptions about OCD

I have obsessive compulsive disorder. My obsessions are me or my family being murdered, break-ins, etc. Therefore, my compulsions are to check locks, close blinds, etc. Here are some common misconceptions about OCD.

 

  1. “People with OCD are really neat and always wash their hands.”

Most people with OCD fall into one of the following categories: washer, checker, doubter/sinner, counter/arranger, hoarder. However, most people outside of the OCD community only know about the arrangers and the washers. But, no, I am a checker so I am not constantly washing my hands nor am I an arranger so I do not constantly arrange things.

  1. “You’re just a scaredy cat!”

I am constantly checking locks, blinds and doors in order to ensure that I am safe. But I am not just a “scaredy cat.” It is so much more than that. Part of you is constantly telling you that you are unsafe or about to get murdered. And it’s terrifying. A fear is one thing, but a “washer” going a week without showering due to the fear of the germs in the water is an obsession and a mental illness.

  1. “I’m so OCD because I love green markers! Lol!”

OCD affects my life in so many ways so it is offensive when people joke about these things. And, no, I’m not just being a sensitive 2018 gen-z teen. I wouldn’t joke about my bald dad having cancer (even though I recognize that cancer is much more serious than OCD it is just an example), so please don’t joke about your neatness being OCD.

  1. “OCD is a fun trend!”

OCD is a mental illness. This seems obvious, but it seems like so many people don’t recognize that it is a mental illness that can become debilitating if it is not treated. Again, “washers” can go long periods of time without showering due to the germs they are afraid of in the water, “checkers” could stay locked inside their house all day to feel safe, or “arrangers” could find it impossible to focus because they feel the need to fix everything! OCD is serious.

 

Thanks for reading! See you next Monday!

Lainey

Insta: @crohnsandcolitisus

Twitter: @crohnsandcolit2

Fundraiser: http://www.gofundme.com/crohns-and-colitis-us

 

The MAP Vaccine – A Cure for IBD?!

5 things you NEED to know about the MAP vaccine – our biggest lead to curing Crohn’s!

My new posting schedule is once a week – Monday at 8am! Enjoy this article!

  1. First the basics

Johne’s disease is a disease of cattle that is strikingly similar to IBD. It is chronic and sometimes fatal, and it affects the small intestines. Some side effects are diarrhea and weight loss. Johne’s disease is caused by mycobacterium avium, subspecies paratuberculosis, or MAP. Because of its similarities to IBD, scientists began to question if MAP could also be related to IBD, and after their studies, they have concluded that there is a strong association and consistency between the MAP bacteria and crohn’s disease. With this information, scientists are now developing a vaccine that is currently in its early stages. The goal of this vaccine is to eliminate the MAP bacteria and, therefore, cure IBD.

  1. How does MAP spread from cattle to people?

The MAP bacteria is found in cattle. Therefore, the most prominent way that this bacteria is spread is through milk, however, it can also be spread through cattle feces. An estimated 68% to 91% of dairy herds are infected with MAP in the U.S. However, not everyone who comes in contact with the MAP bacteria gets the disease. Age, sex, and genes play a factor in if you will get IBD in result of ingesting the bacteria. Furthermore, studies show that how much of the bacteria that you ingest determines if you will develop ulcerative colitis or crohn’s disease, with crohn’s disease meaning that you ingested a larger amount of the bacteria.

  1. Is dysbiosis a lie?

Remember when your doctor explained to you that your own immune system was attacking “good” bacteria in your intestine, leaving your intestine in the crossfire? That’s called dysbiosis. And this theory that we have believed for so long may be true! Everyone has good bacterias in their intestines. Scientists have believed that IBD was the cause of a hyperactive immune system that attacks the bacteria in your intestines. There is evidence to support this, so there are still a lot of questions as to what is true or false. No one can definitely prove one theory right or wrong just yet.

  1. The damage is done 😦

I’m very sorry to report that even if this vaccine was created tomorrow, it is not expected to fix the inflammation that has already occured. This means that if you already have IBD, whatever inflammation, strictures, or obstructions you already have will have to be treated the old-fashioned way, which many times means infusions or surgery.

  1. What’s our progress right now?

The good news is that this vaccine is being worked on as you read this so don’t lose hope! This vaccine is still in early stages. However, hopefully I have something a lot better to report come 2022.

Thanks for reading!

Lainey

Insta: @crohnsandcolitisus

Twitter: @crohnsandcolit2

Fundraiser: http://www.gofundme.com/crohns-and-colitis-cure

Works Cited

“Crohn’s MAP Vaccine.” Crohn’s MAP Vaccine, http://www.crohnsmapvaccine.com/.

McNees, Adrienne L., et al. “Mycobacterium Paratuberculosis as a Cause of Crohn’s Disease.” Current Neurology and Neuroscience Reports., U.S. National Library of Medicine, 2015, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4894645/.

Pierce, Ellen S. “Ulcerative Colitis and Crohn’s Disease: Is Mycobacterium Avium Subspecies Paratuberculosis the Common Villain?” Current Neurology and Neuroscience Reports., U.S. National Library of Medicine, 2010, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031217/.

Starving for 6 weeks

Can’t eat or on a restrictive diet because of your IBD? I gotchu. I had only liquids for 6 weeks because the doctor said I had to go on gut rest. However, when I looked online to find other people in similar situations, tI couldn’t find anything! Therefore, here is what I did to keep myself sane:

1. Ask your doctor if you can “taste” food

This may sound gross, but when you’re craving delicious food, you won’t care. If your doctor says yes, you could chew your food and spit it out in a cup. I did not have this luxury, but some doctors will allow it.

2.  If you can have liquids, eat…

Watered down oatmeal of different flavors, milkshakes, cream of wheat, and thick gravy soup. Try to push it with mashed potatoes.

3. Ask your family not to eat around you

I absolutely HATED when my family would eat around me, so they were nice enough to basically live off of peanut butter and jelly sandwiches for a month.

4. Think of it as a superpower?

I know, its insulting to think of such a terrible situation as a superpower, but it helped me some. Imagine not having to waste your time eating and being able to be productive all day without worrying about hunger. Thats what you can do! Its not fun, but try to think of it that way.

5. This sucks.

There’s no getting around that not being able to eat sucks. Try to focus on other activities and hobbies that make you feel happy. And if you are at an event, think about celebrating why you’re there instead of the food that you can’t eat. Thats all you can do.

6. It can be done.

People before you have done it before! I met a strong woman via instagram who hadn’t eaten for 5 YEARS! Reach out to people in the community, talk about your struggles, and recognize that YOU ARE STRONG ENOUGH TO DO THIS.

 

Thanks for reading my article! I know how hard not being able to eat can be. Reach out to me if you ever want to talk. I’m here for you.

Lainey

Donate to UNC med: http://www.gofundme.com/crohns-and-colitis-cure

Insta: @crohnsandcolitisus

Twitter: @crohnsandcolit2

I love food. ~ Yours truly

Image result for food

Living on my own with IBD

I am in 9th grade and I go to a boarding school. I only went for a week, and then I was rushed to the hospital. Now I go back on October 1st. However, during that week I learned so much about living basically on my own with a crohnic illness. Here is what I learned.

1. Toilet troubles

I don’t know about you, but I hate having diarrhea when other people are in the bathroom. Therefore, I always scope out bathrooms that are semi hidden or go in the middle of class so that I am not embarrassed.

2. Drink lots of water

I am SO guilty of not drinking enough water. If you really don’t like water like me, try the more “classy” waters and see if you like the taste better. I personally like Core water. Some people prefer Figi or plain ol’ Dasani though. You could also get a water filter if you have a sink in your room. It is worth the money if it makes you drink more water because being hydrated really makes you feel less fatigued.

3. Be open to your teachers and “dorm parents” about your IBD

Doing so will allow them to be understanding when you are getting up in the middle of class or need to go to the nurse. Instead of thinking you are just constantly trying to dodge doing work, they will know what you are going through. Keeping all the adults in your life in the loop will make everyone’s life easier.

4. If you are comfortable with doing so, be open to your friends about your disease, too.

You don’t want the first time your friends hear about your illness to be when you are screaming out in pain. I was open with my friends from the very beginning so they were very understanding when they woke up and I wasn’t there because my mom had to pick me up.

5. Don’t feel pressured into pushing yourself.

If you feel like you shouldn’t go to volleyball practice one day or your worried about pizza Friday, you are probably right. Your body is trying to tell you something. Listen before it’s too late.

Thanks for reading my article! These are just a few things that I learned during my short time at boarding school. I hope I helped!

Lainey

Donate to UNC med: http://www.gofundme.com/crohns-and-colitis-cure

Insta: @crohnsandcolitisus

Twitter: @crohnsandcolit2

Education is not preparation for life, education is life itself. ~ anonymous

Image result for college dorm

IBD’s Secret Sidekick

What could be the relationship between IBD and mental illness? Enjoy and tell me in the comments if you have ever struggled with mental illness and how you are doing on your journey to physical and mental health. Also, please give me ideas for my next post idk what to write about next lol. Follow me on insta @crohnsandcolitisus and donate to my very first fundraiser to UNC Medical School who are trying to find a cure for IBD on my “donate” page! Love you all! Educate. Support. Fight!

According to the US National Library of Medicine National Institutes of Health, about 30% of people with IBD also have anxiety or depression. This means that over ¼ of us in the IBD community are struggling with our mental health and, unfortunately, I am one of them who struggles with anxiety and OCD. Why could this be the case and what can we do to help? Before I share my theories, let me clarify that I was diagnosed with generalized anxiety disorder before my Crohn’s became active. However, I was released from therapy in 7th grade, and then once I went through 6 months of 7 hospitalizations in 8th grade, I had to go back to therapy for generalized anxiety. My GAD had also evolved into compulsions, so I was diagnosed with OCD as well.

Many people have anxiety when thinking or dealing with change and unpredictability, and IBD teaches you to be afraid of the unpredictable. I remember waking up at 3 a.m. and not being able to move and my voice came out as a strained scream. It felt like someone was slicing my insides and the pain lasted for hours before I got admitted into the children’s hospital. This is only one of many examples of when my life was going just fine, and then Crohn’s came out of nowhere and slapped me in the face (or the gut haha). This taught me to always be on edge. To fear the future, the unknown. My anxiety and OCD is very similar. I have anxiety over people breaking in (mostly at night) so I constantly check locks, open and close doors, and close the blinds certain ways. In both my IBD and my anxiety, I am afraid of the unknown. Therefore, IBD may teach people to be afraid of the unknown and, therefore, develop anxiety. If fear of the unknown is why some people with IBD may have anxiety, why would they be struggling with depression?

Depression’s biggest tool is isolation, so what better way to sneak its way into a victim’s life than have an IBD sidekick? Thankfully, I have an amazing support system of family and friends, however, not everyone is so lucky. My IBD has kept me from going to so many birthday parties, dances, and events. This isolated me from my friends and made me feel so distant from everyone at times. If my mom hadn’t stayed with me in the hospital 24/7, it would have given me so much time to think about how alone I was and how sorry I was for myself. The combination of sickness and isolation could have easily turned into depression for me, so it is no surprise that IBD and depression come hand in hand sometimes.

In conclusion, about 30% IBD patients have anxiety and depression and this may be because of the unpredictability and social isolation that comes with IBD. The medical field should screen for mental illness at the time of diagnosis to get patients help sooner. As a community, we should recognize that a lot of us are struggling with mental illness and stay connected with each other and be as understanding as possible. If we stick together, we can show each other that none of us are alone and all of us have someone to lean on. If you have IBD and you feel you may be struggling with mental illness, reach out to a trusted adult or your primary care doctor to get resources. If you are ever thinking about harming yourself or others please call the national suicide prevention lifeline at 1-800-273-8255.

DISCLAIMER: These are my THEORIES! You may have anxiety or depression for a completely different reason or it may not be related to your IBD at all. There are a lot of studies about how many people with IBD have mental illnesses but not many theories online to why this is, so I wanted to put some thought into it.

Educate. Support. Fight.

Lainey ❤

Insta: @crohnsandcolitisus

Donate to UNC Medical Center who is searching for a cure! ANYTHING HELPS!: https://www.gofundme.com/crohns-and-colitis-cure

She was always fighting a battle but her smile would never tell you so. ~ Nikki Rowe