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
Happy Halloween (if you celebrate it) all of my ghouls and ghosts!
First I bring you the creepiest Halloween picture of me ever! I mean, what was my mom thinking with those pink eye sockets!? And the expression on my face…priceless. It makes me laugh every time.
Halloween used to be my favorite holiday up until I started spending them in the hospital. The first holiday I spent in the hospital was Easter when I was about six years old. The Easter bunny came to visit me, he left me with a big basket full of candy, and I was told I couldn’t eat it until I went home since I wasn’t allowed to eat at the time. I still remember the disappointment of being sick and mostly alone in a hospital on a day that was supposed to be anything but that. Now I can check off a long list of holidays that have been spent in the hospital and I hate to admit it, but after it kept happening, the magic of the holidays were lost. Last Christmas I didn’t even put up my Christmas tree…
The last Halloween I had spend in the hospital I was so very disappointed. I was supposed to go to a Halloween party at a friends house and all of my favorite people were going to be there. Instead I got admitted on October 30th (Agh! The day before!) and didn’t come back out again until the end of December. Everyone tried to cheer me up, we decorated my room for Halloween, and we got some silly things to do in my hospital room. But truth be told, I was angry. I was angry that whole year. People would ask me what I was going to be for Halloween and I would snarkily reply; “A hospital patient!,” in a not-so-friendly tone. I’m ashamed to admit that, but at that point almost all of that year had been spent in the hospital. It’s not the actual holiday that gets me down, but the fact that my life gets put on hold. I am laying there with tubes in my body, things being pumped in and out, and everyone else seems to live in ignorant bliss around me. It’s as if time stands still for me but keeps going for everyone else. And if it were just one holiday it wouldn’t be such a big deal, but when special days keep getting missed out on, it starts to take it’s toll.
There came a point when I just stopped looking forward to things. I felt like if I didn’t look forward to them then when they didn’t happen I wouldn’t be as disappointed. This all came from a time period when I didn’t know how I would make it to the next day, let alone the future, so naturally I was depressed. I have since learned a lot about life and disappointment. Disappointment is a part of life just as joy and happiness are. It comes and it goes. Now I just cherish the good days and try to remember when things are bad that they usually get better. What I really know is that we have no control. I have no idea what my life will be like tomorrow so I better enjoy it today. I’m trying to get the magic of life (and the holidays) back.
What would it take for the world to start taking Crohn’s disease and ulcerative colitis seriously?
This was my best friend growing up. She saw me through my awkward pre-teen and teenage years, taught me how to kiss boys, helped me shop for “cool clothes”, and so much more. In my world I was the skinny blonde haired, freckled faced dork from private school, and she was everything opposite of that. You couldn’t find a more mismatched pair, but we were BEST friends. It would be nice to see her today and laugh about old times and create new memories, but we can’t. We can’t because she passed away. My friend lost her life after surgery for her Crohn’s disease.
This week we lost another member of our community. I did not know her personally but she was a member of some of the online groups I belong to. I don’t know full details but Karrie Jacobs died three days ago because of a stricture. This isn’t the first person we have lost online and Jessica isn’t the only close friend I have lost in my life who had Crohn’s disease or ulceative colitis. A friend of mine from camp passed away from Lymphoma cancer. She was on remicade and though they can’t 100% confirm that it was the remicade that gave her the cancer, she was the first one messaging me on facebook when I was deciding whether or not to start it, warning me that she had Lymphoma. A year later another girl from camp passed away from Lymphoma cancer…
This doesn’t even touch on the number of people I know (myself included) who have come close to death but were lucky enough to escape. Friends who have gone septic, friends who have had life threatening infections, etc.
It’s true that most people who are diagnosed with Crohn’s disease or ulcerative colitis are not going to die because of it. But the truth is, some people do. While it was complications of surgery that caused my childhood best friend to pass away, she never would have had that surgery if she didn’t have Crohn’s disease. It was cancer that caused my beautiful friend and co-counselor to pass away, but in my mind I don’t believe she would have gotten that cancer had she not been taking a biologic.
My point. These diseases are serious. This isn’t just a little GI disorder. These diseases are causing major damage to our organs. Patients with IBD can experience bowel perforation, toxic megacolon, malnutrition and malabsorption, fistulas, abscesses, and so on. Not to mention the side-effects of some of the medications we have to take. I don’t write this blog to scare anyone and now that I think of it, it does come off pretty scary. But I really dislike when we are not faced with all the facts. With reality. This is real. We have these diseases and they are serious. It is the loss of patients with IBD that fuels my fire even more to educate the world about Crohn’s disease and ulcerative colitis, and to want to hug you patients tight and support you even more.
I don’t want you to be scared. Don’t be scared. I’m not scared.
I think by sharing our stories we all carry the weight together instead of one person carrying that all by themselves.
Anonymous, asked a question:
Crohn’s disease can affect any part of your digestive tract which includes your mouth and esophagus, so yes, it is a possibility that it could be Crohn’s disease causing you the discomfort. The only way to know for sure is to get it checked out by your doctor. Good luck!
I have Crohn’s (When I’m Gone) The Cup Song!
"And then it just becomes a dark room. And me. And the sound of my IV pump working the poison straight to my veins. The sounds of the nurses voices and the beeps of the IV’s of others here getting chemotherapy or blood transfusions, or something else to "save their lives". I’ve been struggling lately to find my positivity. To tell you that you can do this and that you’re not alone when for some reason I’ve lost my strength and don’t feel like I can do this. Feeling alone. I’ve been struggling to balance my two worlds. To fit in, have fun, smile. To be just like everyone else who is so lucky to have their health. Sometimes I’m just tired. So tired of the sick life. Tired of being different. Sad that I get so sick all just because I tried to have a weekend of fun. And because I did I am paying for it. I’m tired of the fact that unlike most people hospitals are "normal" for me. Being poked or hooked up to IV’s is just a day in the life. I’m tired of being held back, or even worse, having people look at me as weak or different. I don’t want their pity. I want them to believe in me. To realize that the strength I have is admirable. I want their encouragement to accomplish my dreams rather than thinking I can’t because I am sick. I didn’t ask for this. I certainly don’t deserve it. I wan’t to be able to go to work and succeed. Be able to spend time with my friends. Be able to do everything I want to do. I’ll do it. I’ll prove everyone who doubts me wrong. But for now it’s just me, alone in this dark room with my IV. Sometimes I get scared and sometimes I get tired. Behind the smiles and the thumbs up in the pictures is just a girl who breaks down and loses her way. To all of my sick friends out there I just want you to know that you ARE strong. That it’s okay to be angry sometimes. That bad days don’t last forever and that there are good days. Treasure them!"
Another from Instagram. Follow me!
From my instagram. Are you following it?
Posted on World Ostomy Day. I no longer have my ileostomy because I have a j-pouch. But my stoma scar will always be there as a reminder. Love to all my ostomates!
WEGO Health is already accepting nominations for the 2013 Health Activists Awards. Word on the street is that once you’ve been nominated for a certain category that people need to keep nominating you (sort of like voting) to help you get into the finals. If you could take a minute and nominate me for the YouTube or Blog category it would mean the world to me. I would LOVE to be a winner one year. It’s kind of been a goal of mine ever since they started.
Here is the link: http://awards.wegohealth.com/?utm_campaign=awards13&utm_source=twitter&utm_medium=social&utm_content=nominee_notification_a/?utm_campaign=HAAwards+2013&utm_source=twitter&utm_medium=social&utm_content=2202536
Put @Sara_Ringer into the box and click the purple nominate button.
Scroll down and click Best In Show:YouTube
Follow the directions!
THANK YOU from the bottom of my gut!
NEW VIDEO: How to tell others about your disease!
I had an excellent time this weekend meeting new friends and connecting with old ones too at the Gut Together that was put on by thegreatbowelmovement.org
As the year winds down I am winding down on IBD activities and planning for next year. Next year you will most likely find me at Camp Oasis Michigan, Get Your Guts in Gear, a certain retreat to be announced later, and we are possibly going to start planning IBD Prom! I’m sure there will be a few other things here and there too. :)
“Today is the anniversary date of my second major surgery. Five years ago I had emergency surgery because adhesions were strangling my small intestine and created a full blockage. They cut me open through my first incision site. At the same time they took down my temporary ileostomy and I was “good to go” with my jpouch. So! My jpouch has been in operation for five years. I think it deserves cake. I swear its my jpouch that wants the cake, not me. I must oblige. In truth five years ago today was very difficult and things only got worse. But here I am today! Today I stood in front of proctors and took a 3 hour long practical test (and passed!) Today never seemed possible not that long ago!”