I have a feeling I’m going to spark up some anger with this one. Don’t worry, I can take it.
There are two things I set out to do when I decided to become an IBD Activist;
1. Do my best to help others not have to go through the things I went through. Feeling alone, feeling ashamed, and being so isolated. Through my videos and my blogs I wanted others to hear me and feel comforted, to shake their heads “YES!” because they had been there too, and to relate to them because for so long I felt like no one in the world ever got what I was going through. Through my voice I wanted to tell your stories.
2. To raise proper and real awareness. I hated the myths and misconceptions out there about Crohn’s disease and ulcerative colitis. That people think IBS and IBD are the same thing. That people think these diseases are comparable to food poisoning or the flu. That people had never even heard of them. That people think that a simple diet change could cure me. Etc, etc, etc!!! So I shared my story, and I shared all the horrifying facts, so that people’s eyes started to open and ears started to listen to about what IBD really is. It is imperative to me that I spread information as correctly as possible.
Those are my two goals. I’m an advocate who wants to be real, to be relatable, and to help you all while I educate people about Crohn’s disease and ulcerative colitis along the way.
Here is where I make most of you angry… brace yourself
I fucking hate purple ribbons. You know why? Because someone just made up that purple was the color of IBD Awareness. It isn’t. It only is if you think it is. And butterflies? Where the fuck did butterflies come from? How the hell is this helping anyone? Dude, don’t get mad at me. I promise you I am not the only IBD advocate who feels this way. Chances are the other pages and blogs you see who don’t share purple shit feel this way too. I know because we privately vent about purple butterflies. ;)
Purple is the color of a whole bunch of things. See wikipedia. You know if Wiki says it’s true then it is. :p http://en.wikipedia.org/wiki/Purple_ribbon
Look. I’m not bashing you if you wear purple or like purple ribbons or want to share purple things you made, or have a tattoo of a purple ribbon with a butterfly. If it helps you personally, then I am for it. If it has meaning to you personally, then to each their own. It’s just not my style. I’m not that type of advocate. What you will see from me is real awareness. Stories. Pictures. Facts. That is the kind of advocate I am.
There are only a few colored ribbons that are easily recognized for a certain condition. For instance, everyone out there knows that a pink ribbon = breast cancer. But chances are you walk around with a purple shirt and purple hair and a purple butterfly necklace and whatever other purple shit you find and no one will know what it means. And it isn’t just the color of IBD, it’s the color of a ton of other conditions. As far as i’m concerned if we don’t have a color of our own (I pick chartreuse) then we don’t have a color at all.
I feel the same way about October and breast cancer month. Don’t get me wrong, a lot of good is done that month and to raise awareness. But as many people out there that are doing good, there are just as many who simply put on a pink shirt. Companies that wore pink but didn’t even make a donation. The month becomes so pink washed that the real reason it all got started gets lost.
Anyway, I had to let it out. I’m sorry. My apologies to purple ribbon lovers everywhere. You do know that I love you right?
*ETA: I also hate the term “crohnies” and hate poop jokes. I suck.
Please watch, please help me, and please share!
Tis the Season! I’m all about paying it forward and doing random acts of kindness. This year I am calling on you guys to help me out because this is near and dear to my heart and I think it will touch you too.
Dan is a guy who comes to the infusion center where I get my remicade infusions. Each Wednesday he buys the patients who are getting infusions, their loved ones, and the nurses a starbucks drink. He does this with his own money and spends about $200 on Starbucks EACH WEEK.
As a patient I know much that random act of kindness can brighten a patients day. Many of those people are receiving chemotherapy, blood transfusions, remicade, and other life saving medications. A simple act of having someone buy you a coffee drink can turn your day around. Dan is a true Day Maker!
As a patient, I want to give back to him. I will be collecting money to purchase a large Starbucks gift card to give to Dan. Please help me out in doing this. Let’s make Dan’s day, since he helps so many others.
I am dedicating all my posts on instagram this week to IBD Awareness. You can follow me here: http://instagram.com/sdringer
Here is an example of types of things you will see;
First up is weight and appearance. Because of my Crohn’s disease my weight is constantly up and down. This year alone my lowest recorded weight was 102 and my highest was 115. My ultimate lowest was 82 pounds at 5’5”. Medications can cause a person who has Crohn’s disease or ulcerative colitis’s weight to fluctuate a ton. Especially steroids which can cause massive amounts of weight gain out of a persons control. For me, I am missing my entire large intestine and my other intestine is diseased. When it is full of bleeding open wounds I do not absorb a lot of nutrients. Not only does this cause rapid weight loss but also depletes me of vital nutrients. There are even more factors that cause a patients weight to fluctuate. Surgery, strictures, and more. I have often been fed intravenously, most recently this summer. What we’d like you to know: weight doesn’t mean a thing when it comes to health. A person can be extremely sick no matter what their weight. We’d also like you to know how hard this is on our self esteem and body image. For both men and women with Crohn’s disease or ulcerative colitis. In fact, I am currently struggling with body image.
Well, another awareness week is here.
Maybe you’ve noticed that I haven’t changed my facebook profile picture. Haven’t designed some unique cover photo or posted a bunch of statuses about my Crohn’s disease. There are no purple ribbons a plenty and no funny memes. Do I suck as an advocate? I hope your answer is no. (But I do hate purple ribbons. I know, I’m sorry).
See, the thing about me is that I make awareness something I do all the time. In fact, I consider it a 2nd job to run this blog, my YouTube page, guest blog, do the Round Table, Camp Oasis, GYGIG, and the many other events, activities, fund raisers, etc. that I do. It’s my life. Awareness for me doesn’t just occur this week, but every week.
I do however have some things planned for this week. Stay tuned for some videos you can share with others, a special Round Table, and more!
For all of you who are spreading awareness for the first time, congrats! Remember to double check the facts that you are posting. ;) Much love and support from me to you!
This is probably the last photo taken of me with a colon. Do the rest of you no-large-intestine people do that too? Every picture I look at I think; “Oh, I had my colon then!” or “That was after I had my colon removed.”
I was going through old photos today and came across this one. It was taken at my very sickest….yet I don’t look a bit sick. Also, this was before I ever worked in the beauty industry. Believe it or not, I wasn’t a makeup wearing, hair doing, fashionable girl.
Anyway, about this photo. I was on very high doses of steroids for months when this was taken. I was also taking 14 asocol a day, had to do mesalamine enemas every night, which at the time was so embarrassing that I would have never told a soul. I was so very sad at this time in my life and going through so much both physically and psychologically. I actually was convinced I was dying. My medications were not working, not even the high doses of steroids made any difference at all. The day this photo was taken was the only day I had ventured out of my house in months.
During this time I was losing so much blood that in less than a month from the time this picture was taken I would receive 3 blood transfusions. The pain that I experienced every day was so intense, so awful, that I was certain I was going to die. Every night I thought that it was going to be the night where my intestine finally perforated and I would be a gonner. The pain felt like my insides were shredding up and falling apart. In a way they kind of were. Once my large intestine was actually removed my surgeon expressed that if we had kept it in much longer it would have been bad news.
Because of the inflammation and the ulcers (remember ulcers = open wounds. Ouch!) my colon could not perform it’s job properly. Our colons are there to absorb water and turn waste into a solid mass. Yeah…tell a bleeding swollen organ to do that! As you can imagine, it couldn’t. So that left me a prisoner of the bathroom. Every day was 20 + times I visited the bathroom and at most I counted 52 times. Of course most days I didn’t count. Worse, I couldn’t trust my body anymore. It was out of my control, I learned that when I started having accidents. I was terrified to go anywhere, embarrassed, ashamed, and therefore I isolated myself. My days were lonely and sad and the life I used to know was gone. I was in my early twenties, a college student, active and vibrant…before all of this.
I failed the semester. I skipped most classes but didn’t tell anyone because I thought they’d think I was a failure. I hid my disease from my closest college friends. I would have NEVER told them I had accidents, or that I was bleeding so much that when I used the restroom all I saw in the toilet was red. When this picture was taken I had already quit my job, already moved back in with my parents, and was in a relationship that was nothing but fighting because of my health. I had no health insurance so my parents had to pay for my very expensive medications which led to me feeling immensely guilty. I saw the fear in my mothers eyes every day when she’d watch me walk around the house hunched over in pain. My time was spent in bed, in pain, sweating out high fevers - a sign of a very sick body.
LOOKS DON’T MATTER! You cannot tell how sick someone is by looking at them. For anyone looking at this picture they would see that I was out and about, enjoying the sun, and hanging out with friends. I don’t appear unhealthy at all. My weight is of normal weight even though I was hardly eating, but steroids kept me looking fine. This picture is just one moment out of my life. But if you snapped a picture a few hours later there would be a different story. Why is it that people only associate sick with a frail skeletal looking person? You never know what is going on in a persons life and you certainly can’t tell based on their appearance. It’s the same meaning behind “Don’t judge a book by it’s cover”.
Less than a month after that photo was taken I began my six month journey in the hospital. A person does not receive blood transfusions, high doses of IV steroids, a pain pump, intravenous nutrition, 2 surgeries, antibiotics, and more for no reason. I hid it from everyone. Only my family knew just how sick I was. But to anyone else, they would have never known. It doesn’t matter if a person looks sick or not. They could very well be very sick.
** Written for all the people who tell us “But you don’t look sick!” or express that they are so happy we are healthy when they see us because our appearance seems healthy. Nothing gets under our skin more because we think “if you only knew”. It minimizes our daily struggles when you base how we are feeling off of how we appear.
This is going to sound crazy. I realize this.
After reading it you’re probably going to think “she’s nuts!” I’m okay with it.
There is something about having a chronic illness that changes your identity, especially when you are in the thick of it. When you are at your worst and your life revolves around doctors appointments, hospitalizations, surgery, medications, and everything “sick” related, it’s hard not to let it take over who you are. When I was at my personal worst I had to quit school, quit my job, move back in with my parents, and fight to just exist. I lost the title of student, employee, tenant, and even friend or girlfriend. There was a point where I had little quality of life and that was when I was admitted for blood transfusions, intravenous feeding, and eventually two surgeries resulting in the loss of an organ. My life became nothing but fighting for life and it revolved around my disease. As I got better things started falling back into place. I found a new job, I moved back out, I started new hobbies and activities. I can now call myself a co-worker, employee, camp counselor, blogger, advocate, friend, and more. But that doesn’t mean that I am like any regular person out there who doesn’t have a chronic illness. I am sick, and because there is no cure for my disease I will forever be different.
It’s difficult at times to not let it consume me, but when I am “Sadie” I don’t have to be the sick girl. It all started at work…
I work with six, yes SIX, girls who are named Sarah. (I am the only one who doesn’t spell it with an H on the end). Because we have so many people who share my name it can make it difficult for clients to book appointments and it confuses the front desk trying to figure out which Sara a tip belongs to or which Sara a client wants to see. Because of that I decided to go by a nickname. Since Sadie and Sally are nicknames of Sara, I decided to go by Sadie at work. All my clients know me as Sadie, most of my co-workers know me as Sadie, and the name is starting to carry over into other friendships.
To me Sadie is who I am at work. I get to forget about who I am at home, and sometimes that is just what I need. Sadie can be anything I want her to be. She is confident, fierce, and she knows the in’s and out’s of the beauty industry. It sounds silly, but my nickname helps me. I work in the beauty industry and sometimes that is hard. It’s hard when my arms are bruised and scarred from IV’s and PICC lines. When my weight goes way up and down from medications or absorption problems, etc. But going to work in the beauty industry forces me to do things I wouldn’t do very often otherwise like do my hair, put on makeup, and dress to impress. For so long I was so sick that taking a shower would be the only thing I could do in a day.
Whenever I am feeling down and sad about what is going on in my life and I am leaving for work I look in the mirror and I say to myself “I am Sadie”. That is when I leave Sara at home and I turn into someone who doesn’t have to be “sick” for a little while.
Sharing a personal experience with you guys about a hard time a few years ago when I spent a lot of holidays in the hospital. But Thanksgiving sticks out in my mind in particular. I was down to 90 pounds, on TPN, and my parents had to eat the hospital cafeteria food as their Thanksgiving dinner. I felt guilt, and so much more. Watch the video to hear the whole story!
Thanksgiving is next week if you live in America. I just wanted to say thanks to all of you!!
NEW VIDEO: Thoughts and Opinions on Drinking Alcohol with Crohn’s Disease or Ulcerative Colitis
**Please note that these are just my own opinions. Everyone will have their own opinions and they may differ from mine and in my happy little heart I am here to accept you no matter what your opinion. But I will not tolerate you leaving mean or combative comments toward me or any other person on this channel. So discuss away, but do so like the grown up people I know you can be.
New Video: Do You Mourn for Your Old Life? Or Do You Celebrate Your New Life?
One thing I’ve found myself doing over the course of many years was wishing that “I could go back”. I think a lot of you do that too. Once you’ve been diagnosed with a chronic illness or once you’ve been though something very traumatic you find yourself wishing you could go back to the life you had before it ever happened. Does this sound like you? What about you…do you mourn for your old life or do you celebrate the life that you have now?
This isn’t some ‘Look at Me’ selfie. This is for my girls (or boys…maybe I inspire men?), especially my young girls who are so hung up on body image. First of all, we’re all going to get old one day. Our bodies are going to age, time keeps on moving on, and our youth isn’t forever. So if there is nothing beautiful about you except your outside appearance then good luck being an ugly person. This is for all my people who have felt upset over medication, surgery, or whatever changed them that wasn’t under their control. There was a time, years before this photo was taken, that I had a very physically fit body. I spent my entire life in the dance studio and then at the gym working for something, yet I never found myself attractive. No matter how much muscle, no matter what new ability, it was never “perfect” so it was never enough. I was…ugly on the inside. During a six month hospital stay I had dropped down to 82 pounds at 5’5” and hadn’t used my muscles in so long that when I got out I couldn’t even walk up the stairs. An entire lifetime of dance and working out was wiped away in 6 months and I was angry. As you can see, I don’t have the body I used to. I have surgery scars, I lived with a temporary ostomy for awhile, and my weight has been all over the place. All of this being out of my control. The funny thing is, is that I love my appearance so much more. I think the worst is when you are put on a medication that makes you gain a ton of weight, or you get so sick that you lose a ton of weight, or you have to go through a major surgery that drastically changes the way your body looks and functions. I truly felt like my body was being violated, I can’t think of a more appropriate word this second. Just so you younger girls know - a surgery scar(s) isn’t the end of the world. None of this is. I can’t lie, I still hate the ups and downs, the things I can’t control, but I see myself as stronger and more beautiful than I was when I was working for “perfect”. No one has ever left me because of my scars, I was in a relationship through all of my surgeries (even when I had my ostomy), and I have had people find me perfectly attractive just the way that I am and someone will see that in you too. Even more important is that you see it in yourself.
"You don’t look sick"
Why does someone have to look sick to be sick? This is Alex. She is only 20 years old and is currently in hospice living the last days of her life BECAUSE OF CROHN’S DISEASE.
Before I go any further I just want to take a moment to share with you her fundraising page and ask you to visit it. Donate to her family if you can, they are being forced out of their home and that is the last thing this family and this girl needs during the last days of her life. She needs our love and support and they need a miracle. http://www.youcaring.com/medical-fundraiser/beautiful-beyond-the-pain/104060
With that said, this story hits me really really hard right now. Perhaps because Alex is a fellow Camp Oasis counselor. Even though she does Camp Oasis Georgia, and I do Camp Oasis Michigan, I feel like we are all one big family. Perhaps this story hits me so hard because I read it two days after the two year anniversary of losing my friend Katie, who was my co-counselor at Camp Oasis. Right now I have a close friend in the hospital (love you Mally!) and I just had a close friend get out of the hospital (love you too Beth!), and maybe it hits hard because it seems like I am seeing these stories all too often.
This could be me, it could be any one of us.
And when I look at the pictures of Alex who looks young and beautiful and vibrant, I can’t help but think that she has probably been told the words “You don’t look sick” too. Invisible illness is real. A person may look fine on the outside but their insides do not match. To all of you reading this that do not live with a chronic illness yourself, please know that. I lost a friend just months after she danced with me, sang with me, and gave herself to sick kids who needed us, with me.
I titled this blog Gaining Another Angel, but to be honest I don’t know what I think about what happens after life. I know what i’d like to think.
To sweet Alex, you are making a difference right now. 20 years is not that long but you are not going without a purpose. Right now everyone in our Crohn’s disease and ulcerative colitis community is holding each other a little tighter and we are working even harder to get the word out. We are sharing your story so that more people know just what IBD can do! I wish you peace and comfort in your last days and hopefully some laughs too. Camp Oasis Georgia will now have an angel just like our camp does. Say hello to Katie and Jessica for me. <3
**I just want all my readers to know that we can’t let this scare us. We have to be strong. Look life in the face and take it on, you can do it! I don’t know how many days I will have here on earth (no one does) but you better believe I’m gonna werk werk werk (that’s my inner drag queen speaking) until the day that I die.
One of my biggest fears is set back. I’ve been caught in the vicious cycle of:
get my life on track
go to the hospital
start all over again
It seems every time I take a step forward that I have to take two steps back. So when I do get back to the place where life seems to be normal(ish) and I’m working and doin’ my thang, I live in fear that I am about to get sick and get hospitalized and then have to start over again. There is nothing I hate more. Okay, that’s a lie. I’m sure I could find plenty of things I hate more but you get what I’m saying.
Lately I’ve been pretty anxious and it’s causing me to not be able to sleep. This isn’t a constant theme in my life- I go through phases where I’m fine and live with no fear and seemingly have my shit together. But there are other times where I’m just afraid and the littlest things keep me up all night. The anxiety spirals from one thing to every other thing in my life.
So I work with people, and I love it. But people get sick, and tis the season. My co-workers have been coming to work with strep throat, viral infections, and whatever else and I get scared. I hate it. I hate that getting infusions lowers my immune system tremendously and that I have to fear the people around me. Normal people don’t have to worry about this because they have immune systems that haven’t been lowered to nothing by medication and they don’t have autoimmune diseases where their bodies are out to get them, so even if they do catch something they probably have the ability to fight it off. But if we catch something it could really set us back. If I catch whatever is going around I might not be able to fight it off, but even worse a simple cold could turn into pneumonia or something worse.
This really has to do with my fear of being put back in the hospital. I don’t have the mental strength right now to handle another hospital stay. I think I used it all up earlier this year when I was in the hospital. And maybe a bigger underlying fear is being out of work. I hate that a hospitalization makes me look unreliable as an employee. Who can count on me if they think I am so unpredictable at work? I hate that so much. That isn’t ME, that’s my disease. I am a hard worker. I am reliable and driven and I love life. But my disease has other plans for me and it causes me to be unpredictable. :( I just want to be looked at as a hard worker with a ton of drive and passion, because that is who I am.
So lately when my co-workers have been showing up all around me sick I freak out. And it’s not a good feeling. There are just so many things to think about…
I’m so tired of moving forward and then being set back. I know I have incredible strength and I hope I never reach my breaking point.
"Oh, I know someone with Crohn’s disease!"
I hear that more often today, but then it’s usually followed by a sentence that shows me just how much the person does not understand;
"So you can’t eat gluten?"
Even more misunderstood is ulcerative colitis. Most people haven’t even heard of ulcerative colitis, and the ones who have, really have no idea.
And when we get smart and use the acronym IBD it really throws them for a loop. Why is it that IBD automatically seems to switch to IBS in a person’s head? They are two entirely different things. A whole different playing field. That would be like saying hockey and curling are the same thing. Sure they have some similarities (both played on ice, both a sport) but they are actually quite different. Curling isn’t a sport and hockey is amazing because Red Wings! ;) Oh dear, I’ve gotten off track…
What I’m trying to say is what does the world know about IBD? What does it actually think we are dealing with here?
Then insert the stupid commercials we see on TV from pharmaceutical companies and the stupid (in some people’s opinions) ad campaigns that trivialize things. It is no wonder people confuse Crohn’s disease and ulcerative colitis with something like IBS. All of these things make it look like our only problem is a little tummy pain and the bathroom.
But what strikes me as even more odd, is how much actual patients don’t understand about their disease. I frequent quite a few support groups and pages on facebook and I’ve been really astounded at what I have been reading lately. Patients who have been living with this disease for years who can’t accurately explain their disease. People who are blindly believing doctors who clearly are not doing them right. Believe me, not all doctors are created equal. I have read from one person that Crohn’s disease is located in the small bowel only. I have read from another person stating that she has Crohn’s colitis but has symptoms in her small bowel. I have read from people who have said they have both types of inflammatory bowel diseases. It goes on and on and I watch people state their opinions and what they believe to be true and it seems that so many people are misinformed.
I beg you guys to educate yourselves if you haven’t already. It is SO important to know what is going on in your own body because that will benefit you your entire life when it comes to your treatment plan and for working with your doctors. But equally important, we need to understand what IBD is so that we can accurately advocate. You may not think it’s important, but even when a best friend, relative, or stranger asks you about your disease, you are the one giving that person the knowledge of what Crohn’s disease and ulcerative colitis is. If you don’t know, how will they know?
What happens if:
Your cousin asks you about Crohn’s disease and you tell them wrong information or you minimize the disease.
Your cousin tells every other cousin in your family. And you have a big family (50 cousins). She tells each cousin “you get tummy aches and just take some medication.”
Each cousin tells a friend about you. Now that is 100 people that think it’s no big deal….
So maybe that doesn’t sound so bad. That’s just you! But lets say that there is another person out there who has ulcerative colitis and he is telling a friend that the disease just makes him have to watch what he eats and he cured himself with *insert random fake cure*. That friend is so impressed that he does a speech for his science class about his friend who cured himself of ulcerative colitis by taking *something stupid*. There were 35 people in that class who were so impressed that they go out and tell their groups of friends, and those friends tell friends, and so on.
Now we have 100 people who think Crohn’s disease isn’t a big deal and however many people who think that you can cure ulcerative colitis. And that is only because of two peoples misinformation. Now think about how many people we are misinforming about IBD when so many of us don’t have the facts. It’s hard enough when we have stupid commercials portraying us as idiots walking around in circles looking for a bathroom and ads that show pictures of bathroom stalls. What about the blood loss, blood transfusions, hospitalizations, major surgeries, dramatic life changes, the financial burden, our self-esteem, body image, harsh medications, side-effects, arthritis, anemia, strictures, fistulas….I could go on forever….
THIS is why we need to start with educating ourselves. WE are the best tools for getting the word out. WE are what will make Crohn’s disease and ulcerative colitis not only a disease that people have heard about before, but a disease that is taken seriously. And once people really know what these diseases are about, then we gain more awareness, more funds, better treatments, and who knows…
So spread information! Spread it accurately! Start with educating yourself first. And that doesn’t mean just reading what is going around on the internet from patients, because as awesome as those people are, they might not have the correct information. So read those pages, but read other more credible sources too. If you combine real information with your own personal experiences then you are on your way to being a great advocate!
I say this with love for each and every one of you. You guys are my people, my family.
**And a word on the bathroom: I have severe Crohn’s disease, yet 90% of it does not involve the bathroom. I don’t even think about the bathroom and I use the bathroom not much more than the average person. However my disease is still considered severe (obviously, I’ve had surgery to remove an entire organ). What I do think about is my j-pouch and if it will ever fail me. I deal with dramatic weight loss and severe malnutrition and malabsorption when my disease is active because it’s located in the small bowel. I think about my missing colon and how I need to stay on top of electrolytes and hydration. I deal with pain, internal bleeding, and fatigue I have a hard time explaining because it’s so awful some days. I have intestinal dysmotility that may or may not have been caused by the disease itself or by surgery. I have arthritis that really affects me almost daily. I visit the hospital often for my infusions. I think about ALL the things that are not physical symptoms, but sometimes hurt me more like: where I am financially, medical debt, the toll it’s taken on my relationships, how it’s changed me, where I am at in life, body image, etc. None of these things have anything to do with me running to a bathroom. And for the people who have ostomies, how can they relate? IBD (Crohn’s disease and ulcerative colitis) is different for everyone. While many patients are currently dealing with the constant trips to and from the bathroom, so many others are not. There is such a wide range of challenges we face and these diseases are a big deal.
We are so often frustrated by how much the people in our lives just don’t understand. But they will never understand more if we don’t help that along. And they certainly will not understand if we ourselves are not educated.
All my love to you guys,
P.S. Link to the awful Humira commercial. WHAT IF your symptoms are caused by underlying damaging inflammation? Such a joke. Of course inflammation is causing it! http://www.youtube.com/watch?v=FEEEC4ZBIO4