crohns day

World IBD day 2017 💩

To be honest: I almost forgot about today’s WORLD IBD DAY.
I mean it’s good that my life isn’t just about the daily struggles with Crohn’s disease anymore.

I work. I eat. I run. I travel. I basically live the life I always wished to have and that I though would be impossible.

But still there are moments IBD affects my life even though I’m in remission:
I have to be careful with food especially when eating out. I take my daily medicine and see my GI regularly (including poop samples 💩 that’s one of the IBD specialties). I get sick more frequently than other people do.

For example: Last week I woke up every other hour one night and ended up taking some pain killers…just because I had a Pizza margharita for dinner (normally a relatively safe food when I skip most of the cheese). Or I had to explain why I can’t have ibuprofen or other NSAID when I visited the doctor for a bronchitis with fever.

I try to educate people about IBD with telling my own story when I feel like it and they’re often very interested in it.
Remission is wonderful and I’m grateful for every single day because I haven’t forgotten about all the pain, nausea and troubles I went though the past 9 years.

I hope you’re doing relatively good. Sorry for my absence lately. Hugs xxx

Finally after MONTHS, maybe even years of writers block from being so sick from my Crohn’s disease and being on so many medications that I physically and mentally wasn’t myself (I’m now off all meds after my surgery) , IM FINALLY WRITING AGAIN and it feels so good, my mind is finally back!

My name is Teresa and I am 23 yrs old. I have been battling (relatively unsuccessfully) Crohns for the past 5 yrs. There are a lot of other smaller issues, but they’re not so interesting.

Last fall I had surgery #3 and a temporary colostomy and a diversion were placed. My doctors are in the middle of debating further surgery to remove my gallbladder and the rest of my colon.

Every day is a new new challenge. I am so grateful that I am not in the hospital right now and I’m trying to keep my life as relatively normal as possible.

I am not ashamed of my disease or my ostomy, but I still hide it as much as possible. #NoShameDay is such a beautiful idea! We all have things we hide from the world, but our broken bodies shouldn’t be one of them. We are warriors and our scars should be worn with honor, not dismay.

Was It?

Was it the bread

That got to your head?


Or was it the butter

That made you stutter?


Maybe you think it was the salt

That made it your fault


I know that the berries

Didn’t make you marry


But what was your deal

With the oatmeal?


Was the grapefruit too tart?

Maybe it’s why you had to fart


You gave a nickel

For a fried pickle


Maybe the pie

Was the reason that it felt like you were going to die


I mean the honey

Did seem to taste a little funny


Did the steak

Give you a stomach ache?


Was it the chicken soup

That made you have to go poop?


Or was it the icing on the cake

That made your stomach break?

Remember: Wear purple for World IBD Day, tag me in the post of photos, and you will be included in my blog post for IBD Day! 💜

#PurpleforIBD Today is World IBD Day.

As most of you know I was diagnosed with Crohns when I was 9 years old and I would not be the person I am without my illness. That being said, this same illness wrecks the lives of hundreds of thousands of people between harsh medication, surgeries, medical bills, feelings of isolation, and of course the actual symptoms of the illness. But it can also bring people closer together, make friendships, and start a change. I am Grace, I’m 18 (almost 19, I have an ileostomy, and I have Crohn’s disease. The disease may be invisible but I am not and I’m here to raise awareness. You can too by wearing purple for World IBD Day!

I need IBD Awareness Day because:

  • When I was younger, people wouldn’t come near me because they didn’t want to catch it.
  • Teachers accused me of faking sick just to get out of class because I didn’t look sick.
  • Even after spending 2 months in hospital for a major surgery, my boss told my coworkers I was faking it for attention and that my family was just “babying me”.
  • My “friend” told me I would never go anywhere in life.
  • Family members still tell me I “just need to try harder.”
  • I’ve been told to “stop whining, so many people have it worse.”

I need IBD Awareness because even after having this illness for 10 years, people still don’t understand.

I wasn’t gonna post this at first (because even though I’ve been diagnosed since I was six I’m still not really comfortable talking about it) but I just want to let all my black people with Crohns Disease know that you matter and are represented in this movement. So with this selfie of me getting my Remicade infusion, I’m repping for us… #blackout

10

April 17th is No Shame Day. A day where people like me can talk openly about their disabilities. My name is Brenna and I have Crohns Disease. It’s been 5 years and a crazy journey that started during my freshman year of high school. Crohns is an irritable bowel disease that can affect the entire digestive system. It’s an autoimmune disease where your immune system mistakes your cells for foreign invaders thus causing massive amounts of inflammation and pain. My disease is primarily in my ileum in my small intestine. I now have a build up of inflamed scar tissue, called a stricture, in my intestine so thick that a colonoscopy camera can’t push past it to get a better visual on the rest of my system. I was on remicade for 4 years, until I grew immune and now I’m unmedicated and scared. I worry daily about hospitalization and medical bills. Living this way, I forget almost what it was like pre-disease. I get infections at an alarmingly easy rate because of the immunosuppressive drugs. It makes things like getting my nails done difficult. My weight is all over the place as steroids make me gain and sickness makes me shed all my healthy weight. My skin is definitely changed. I break out and react to things more often, I can also no longer tan as remicade has made me increasingly photosensitive. This disease at times embarrasses me. Makes me feel ugly, unworthy, and like I’m complaining about stuff that doesn’t matter. Some days I feel like I should just “get over it” and push through it like a healthy person. Then the next, I’m in the hospital for a serious obstruction. Many people will look at me and say I’m healthy, but invisible diseases matter. My pain is real and my struggle is real. I used to feel like if I didn’t give off the appearance of a healthy person, no one could love me. Today, I have a fiancé who loves me more than I think I’m worthy of, crohns and all. I’m in college online because it works with my schedule and between my symptoms. One day, I know I’ll find remission and the daily pain will stop. Until then, I’m beautiful and I can take on the world one step at a time.

Having a chronic illness is life-altering, but not life-ending.

We may not die from it, we may continue to live long lives, but they will be vastly changed from anything we ever imagined for ourselves.

We can still have lives though. A diagnosis doesn’t mean your life is over, it simply means your new normal is just beginning. :) Don’t ever give up.

10

What does blackout mean to me?

My name is Twila Amoure and about 3 years ago I was diagnosed with an autoimmune disease and to say things have always been easy since then would be a bold lie. I missed what would have been my senior year of college because I was in the hospital for majority of that school year.  While in the hospital I lost a lot of weight and strength. On top of all that the medicine that I’m on (remicade) has caused my hair to fall out. 

The first black out was around the time I had just gotten discharged from the hospital and I posted a selfie. Back then I was really struggling with how my body looked and honestly I didn’t feel beautiful. But you guys showed me soooooooooooo much love!!!!! seriously!!! not only did Ya’ll show my selfie love but some of you even sent me encouraging words in my ask box. 

So here I am again, giving an update lols. As you can see I’m doing so much better! My hair is growing back, I’m no longer using a walker, and I’m much happier. I even started a youtube channel since then   https://www.youtube.com/channel/UCd3p37ARyRybA7uG4wLdwtg 

(please check it out and subscribe) 


Blackout to me means love and support. Because that’s what ya’ll gave me, love and that’s what ya’ll showed me, support. 

much love from me to all my black brothers and sisters :)