**This post is edited. It was originally from the HAWMC (that I never completed) where I was asked to introduce my disease to people who don’t know about it. Updating and sharing again!
1. My name is Sara. I do go by the name Sadie though often now in my real life. It all started at my job where there were 5 other people who had the name Sara. They call me Sadie there which is a nickname of Sara. Now we have six people there with my name! Other names I am commonly referred to are: Ringer, Ringo, Sara Sally Ringo Raphael, and Squirt. You can thank my mom for that last one.
Hello. Here is my face. Now you know what I look like. Well what I look like in bright lights and makeup, anyway.
2. I have Crohn’s disease (i’ll get to that in a bit). I also have a j-pouch, a motility disorder, and autoimmune arthritis. I suppose I could tell you the little things like I currently have a hernia and gallstones but those are just the little details.
3. I work at a salon. And by work, I mean I go there when I am not in the hospital or not out for long periods of time due to my disease. I’m sure you other health activists know how that goes. My boss is amazing for that, and I found a real passion in what I do by chance. I have my disease to thank for that! I do nails and makeup there and it is fan-freaking-tabulous! I also manage the social media of the salon. I’m a hard worker, I always have been and I always will be…unless something is preventing me from doing so.
4. I have an animal problem. No seriously, I am pretty sure if people were not around to stop me that I would have 4 dogs and 7 cats by now. Luckily someone is always there to stop me…most of the time. That is how I wound up with my big German Shepherd dog, Scout. I went to the Humane Society to maaaaaybe get another cat. I felt like my cat, Ludacris, needed a kitty friend so I went there to scope out the felines. I took a wrong turn and wound up near the dogs and that is when I spotted a 7 year old German Shepherd who had bandages on both legs and a head cone. He also came with anxiety meds and prednisone. I came home with him! Oh btw, I have never had a dog of my own before then. There are 3 horses and a donkey for sale right now at the Humane Society…
5. I have an incredible memory. I love to read. I LOVE the Harry Potter series books (movies are okay but the books…omfg) and I am convinced I am in the house of Ravenclaw. If you are rolling your eyes right now then it’s obvious you’re a muggle. Unicorns are fun. I like to eat cake. Sunshine makes me happy. I have the imagination of a 5 year old but at the same time I am a very old soul.
6. I was a dancer for a huge portion of my life and then went on to teach and choreograph. I had competitive dance students that went to local and national dance competitions. Think Dance Moms except I wasn’t a big and mean teacher. I was small and loud! While I worked as a dance teacher I had a second job as a cake decorator. I was the lead cake decorator for many years in the bakery.
7. I am terrible with technology. No for reals you guys. It’s a wonder I know how to operate this blog. I learned how to edit videos in the past year and use the easiest program for everything. I am apparently good at fooling people because everyone thinks I got skillz! Y’all, I can’t even operate my remote control! I still don’t understand google analytics fully and have no idea how many people actually read this blog. I like to stay in the dark and pretend like I get thousands of hits a day. ;)
8. I have a chauffeurs license. I could drive a limousine, taxi, or a small school bus if needed.
9. I love snakes and all cold blooded animals. At one time my brother and I had 15 pet snakes because the snake we had had babies!
10. My favorite kind of food is tied between Thai, Indian, or sushi. I love socks but hate to wear anything on my feet. I have a biggest heart but it’s hard to knock down the walls I’ve built up to get to it. I love laughing, I love to learn, and I really love to travel. I hate cold weather. I don’t understand hatred, violence, or the evils of the world. They can get me pretty down. All I want to do is leave my mark on this world and make it a better place for at least a few people and in return all I require is feeling happy, safe, and content. I never want to stop learning because once you stop learning you stop growing. I also never want to stop teaching. I’m pretty fricken silly most of the time.
Okay, WEGO told me to introduce my health condition to you all. So now here we go for real:
Hi, I’m Sara, and I have Crohn’s Disease. I don’t have any of my large intestine or rectum left (ewwww, she just said rectum!). Did you know you could live without your large intestine? I didn’t until I got sick. Fun fact: Your large intestine and your colon are the same thing. I use the words interchangeably on purpose because of that fact. If you didn’t know before, now you do. I have no colon. I have no large intestine. Same thing. Ba-da-boom, ba-da-bing! <—-I just wanted to say that.
(I like to make IV’s look fashionable. hahaha)
I have a J-Pouch. It’s pretty cool you see, I’m kind of like a marcupial except I don’t carry my babies in my pouch. I carry my…. nope. Not going there. So as I said, I don’t have my colon. Instead the end of my small intestine has been reconstructed and turned into an internal reservoir and is attached to my anus (Crohn’s disease is the sexiest of dem all!) so that I can use the bathroom just like everyone else. To get my j-pouch I had to have two major operations that came with a lot of pain and complications.
A normal persons insides look like this:
Mine look like this:
Like I said, sexiest disease of them all! To read more about my j-pouch and what it is you can read this blog I wrote: http://www.inflamed-and-untamed.com/post/24890754880/what-is-a-j-pouch
*So here is what you need to know about Crohn’s disease. A lot of people have the misconception that it is just like IBS. If I can get you away from one thing it would be this. Crohn’s disease is an inflammatory bowel disease. IBS is Irritable Bowel Syndrome which sucks, but is a much less serious condition. Another misconception is that it has everything to do with stress and diet. Listen peeps, if I could have saved my large intestine by changing my diet and controlling my stress, you better believe I would have. This is an autoimmune disease, just like Lupus, Rheumatoid Arthritis, and all the other autoimmune funtime body games. My disease attacks my digestive system but it also has what are called “extraintestinal manifestations”. Meaning a lot of people with Crohn’s disease also have issues outside of the digestive system like arthritis, eye problems, skin problems, liver problems, and so on. I have arthritis that can often be debilitating. It’s awesome being young and feeling old. No, no it’s not!
Crohn’s disease can attack your mouth, esophagus, stomach, small intestine, large intestine, and rectum (I am finding every excuse to use the word rectum). When I am sick my remaining intestine becomes inflamed and starts bleeding. It’s not uncommon for people with my disease to need blood transfusions from bleeding internally. I have received some blood transfusions myself. This bleeding also causes a person to become anemic which causes extreme fatigue and so on! When my intestine is bleeding and inflamed it hurts to eat. It hurts to eat ANYTHING. Sometimes it even hurts to drink water. I also don’t absorb nutrients well during those times and lose weight rapidly. That also contributes to the major fatigue I often feel.
There have been times when I have not eaten any food by mouth for weeks or months at a time. I am put on something called TPN which is nutrition that is given to you through a PICC line. Sometimes patients are put on this to give the bowel a “rest”. Sometimes patients are put on it because they are not able to absorb nutrients when they are so inflamed inside that their intestine isn’t able to absorb what they are taking in. Sometimes we are put on it because of something called Short Gut, which means that so much of the digestive system has been removed through multiple surgeries that they now don’t have much of it left. There are a number of reasons why Crohn’s disease patients are put on TPN.
Surgeries are something a lot of us are faced with. Sometimes the whole colon has to be removed or sometimes patients have portions of the small and/or large intestine removed. For patients with Crohn’s disease the likelihood of the disease coming back near the portion of digestive tract that was removed is high, therefore multiple surgeries are sometimes required over a lifetime.
(After a surgery)
Some patients experience painful blockages. I have been hospitalized many times for them and have had a surgery to resolve one. Blockages can occur because of something called strictures, which are a narrowing in the digestive system caused by scar tissue. The scar tissue is the result of periods of inflammation and healing over and over which hardens the intestinal wall and it thickens. Blockages can also be caused by adhesions due to surgery and a number of other factors. Sometimes these blockages heal on their own, other times a patient requires hospitalizations for pain medications and fluids or nutrition until it passes, and sometimes surgery is required.
Some patients experience fistulas. This happens when an ulcer in the bowel penetrates through and creates a tunnel from the digestive tract to another area in the body. This tunnel can lead to the skin or to other organs. Sometimes an abscess occurs due to the fistula, which is a very serious infection.
A number of different medications are used to treat Crohn’s disease. I go to the hospital every 7 weeks to get an infusion of a drug called remicade. Remicade is a biologic and works like chemotherapy to suppress the immune system. I also inject myself with methotrexate, which is a chemotherapy that also suppresses the immune system. Because of this I have to be extra cautious around sick people. I also worry about the potential life threatening side-effects of these medications. Steroids are very common in my community, which also have horrible side-effects. Other patients use different types of anti-inflammatory drugs. A lot of times finding the right medication for the patient is a guessing game. We are all a bit different and respond differently to treatments. What is even more confusing is that a medication can work for a patient for a long period of time and then just stop working. Some patients don’t respond to any medications they try, and some patients choose to not take medication at all.
Symptoms vary from patient to patient. The most important thing to understand is that every Crohn’s disease patient is different. Some of us have the disease very mild, others very severe, and everywhere in-between.
You might meet a Crohn’s disease patient who has an ostomy. This is often a life saving surgery where the intestine sticks out of an opening in the abdominal wall called a stoma. The patient has no control over the things that move through their digestive system and therefore a bag has to be attached to the stomach around the stoma to collect waste. This is not gross and these people are not to be feared. Take a look at my sexy friend and fellow Crohn’s disease advocate Jess Grossman who is working so hard to squash ostomy stereotypes. She’s hot and she shits in a bag. So what!
It’s not uncommon to experience anxiety and depression from living with Crohn’s disease. It’s exhausting both physically and mentally! Medications cause changes to our bodies such as weight gain, weight loss, hair loss, moon face, psoriasis, acne, arthritis, and so forth. These changes to our bodies are hard to handle because we have to take the medications and have no control over the effect they have on us. Surgeries alter the way our bodies look and function which is a major adjustment. Frequent hospitalizations and uncertainty in our life plans cause major anxiety and fear of the unknown. We often feel embarrassed of our disease or symptoms and isolate ourselves. When we are bleeding internally or inflamed we become tired and our bodies are working extra hard fighting a disease. That, medications, and other things make life with Crohn’s disease often exhausting. We may cancel plans or seem like hermits at times.
The cool news is some patients respond to treatments or surgeries well and are able to live happy and full lives. Others do not. It’s all a wide range of how the disease will affect a patient. This is just a liiiiiitle bit about life with Crohn’s disease.
That may have all sounded scary and depressing (truth is some of it is) but my disease has taught me a lot of life lessons. All I can do is do my best and keep putting one foot in front of the other. I look at life a lot differently than my peers and I think it’s a blessing. The thing I want most people to know is that I don’t want pity and I don’t want you to be afraid of me. I’m pretty cool - I’m funny, smart, and interesting (hopefully) and I make a pretty great friend. I just also happen to be sick.
So that’s me and my disease. Now I am off to meet all of you!