#flashbackfriday An Ariel view of part of EMU’s campus.
Coming across this picture just made me think of some of the most difficult times in my life. If you look to the top middle of this picture you will see a cluster of 3 tall brown and tan buildings. One of those was the dorm that I lived in while I was dying.
No really, that wasn’t just a dramatic statement. This was all before this blog existed. The Sara that you know today was a very alone Sara back then. I didn’t know anyone else in my life who had Crohn’s disease or ulcerative colitis and I didn’t go on the internet looking. Facebook pages and blogs about IBD were few and far between and not all that great if you could find one. I was embarrassed and trying to hide my disease from everyone, I felt like I was carrying around this big secret and I was scared to show my true self. Everything became lies or trying to cover things up. I had stopped going to the majority of my classes but I didn’t want to tell anyone. I thought about the money it cost for that semester and how I just stopped going to the classes so I would fail them, ruin my GPA, and be put on academic probation. I didn’t want my parents to know and I didn’t want my friends, who were so smart, to know that I was a failure. I was in a relationship and because most of my nights were plagued by severe pain and because at this time I still had my large intestine that was bleeding so bad I spent most of my time in the bathroom losing blood, all I did was wish that I had my dorm room to myself. Get out. I want to be alone. I don’t want anyone around me. A lot of fighting occured.
I experienced things about my disease so embarrassing that I would never speak a word of it to anyone. Everything was me - going through so much - and going through it alone because I didn’t want anyone to know. The isolation that I put myself through back then is a huge part of why I created this blog. I wanted to help others who knew what that felt like so that they wouldn’t have to go through it alone. How I wish I had a blog like this to read back then.
I still do not understand how I managed to make it to the end of winter semester that year. I didn’t make it… I slowly stopped going to my classes. The only class I did go to was a class that I was taking for fun and filled one of my requirements - tap class. I went because I loved it and because the teacher often had me teach the class when she could not be there. It was difficult just to make the walk from my dorm to that class on the other side of campus. I stopped spending so much time with my friends and usually the only time I would see them anymore was Tuesday nights where we all held a position for a campus organization.
I was on high doses of prednisone, taking a ton of asocol, and the worst, I had to do mesalamine enemas at night. Winter semester ended in May and not even two months later I was hospitalized and having my surgeries. I received blood transfusions right away, even higher doses of steroids through IV, I was put on TPN and total bowel rest, and then my first surgery came. How I even managed to stick around EMU at all is still a mystery to me. I was so sick, I knew I was sick, but I had no idea I was that close to the edge.
When I “flashback” to my time spent at EMU I think about how it wasn’t really that long ago, but I have changed so much. I am here, I have a voice, I can now talk about it. So much of the burden of living with this disease has been lifted because I found my voice and I share it with you. I have made friends on the internet and in real life who get it, and that is what gets me through this.
Do you crave salt? If I could salt this blog I would!
One of the most awkward situations for me when I am eating in front of others is the salt shaker. Speaking of salt shakers I am obsessed with pep art. Google it!
I salt my pizza, my soup, my fruit, my cottage cheese, MY CHEESE. You name it, I salt it.
One of my best friends in this whole world sent me this text a few days ago. She also has a j-pouch and she experiences the same cravings for salt, delicious delicious salt. Same with Marisa who most of you know, who lives with an ostomy and shares our affection for the tasty white crystals sent from heaven. In fact, most of my friends living without their colons crave salt. I have even called some of you my “salt sisters” - you know who you are. ;)
Why do we crave salt? We all know we can live without our large intestine (aka colon) because here I sit writing this to you without it. The small intestine is responsible for absorbing the majority of our nutrients and then once everything enters the large intestine it absorbs water, sodium, and some fat soluable vitimins. Basically the colon absorbs water and some electrolytes from remaining indigestible food and then turns it into waste to be discarded, well, do I really need to tell you how?
Dehydration and electrolytes: Those of us missing our colons are at risk for dehydration and electrolyte imbalance but so are many of you who still have your colons but experience dehydration and electrolyte imbalance because of Crohn’s disease or ulcerative colitis. This can occur because of malabsorption, diarrhea, vomiting, and some medications.
Electrolytes are in the blood, urine, and body fluids and you get them through the food you eat and the fluids you drink. Calcium, potassium, chlorine, phosphate, magnesium, and sodium are all electrolytes. Electrolytes can become too low when the amount of water in your body changes - which can happen because of dehydration. Those of us missing our colons or with compromised digestive systems are at risk for dehydration and therefore electrolyte imbalance.
Why are these electrolytes important? Well, they’re not just important, they are vital! Did you know that death can result from a severe electrolyte imbalance? Our bodies need to keep fluid levels from varying too much to function properly and sodium is a key electrolyte regarding our fluids.
The good news: For most people the amount of salt I eat would not be a good thing, but lucky me - my doctors have said, “Hey girl, hey! You keep that salt intake just the way it is!” Okay, they didn’t use the phrase hey girl, hey!
But because dehydration is something I experience often I am able to keep enjoying all my salty foods. I once was told after my millionth or so very low blood pressure reading that I should eat more salt and I just sat there laughing to myself thinking if you only knew how much salt I already eat…
So keep those fluids and electrolytes in balance. There are even drinks out there with electrolytes in them. I once knew a doctor who prescribed pickle juice.
If there is a heaven and heaven is healthy, and there is a hell and hell is the hospital, I feel like I'm stuck in purgatory right now.
Konichiwa my blueberries,
It is time to continue the story of my most recent hospitalization. If you missed the first three parts just scroll down. Since I just posted my video on doing TPN from home I thought now would be the perfect time to talk more about that and recovery at home in general. Plus I’ve included loads of pictures!
I have been on TPN many times throughout the years and TPN is used for many different reasons. It is used for patients with short gut who are unable to absorb most of their nutrients through eating, it can be used for patients who have Crohn’s disease of the small bowel and are also unable to absorb enough nutrients. It can be used for patients with IBD who need to rest the bowel. Ulceration and inflammation can be very painful and often irritated by anything passing through, so sometimes a patient is put on total bowel rest and uses TPN for a short time. Some patients with a fistula will need to use TPN while it heals and some patients with strictures or blockages are also put on TPN. Many patients with motility disorders use TPN as well as patients with cancer and patients with other diseases or disorders. These are just some of the reasons that a patient would need TPN.
Some people will be on TPN permanently and others are able to come off of it, and some use TPN as their only means of nutrition and others use it along with eating by mouth or with tube feedings. The main thing to understand is that TPN is receiving nutrition through your veins when you are unable to eat or cannot sustain yourself through eating alone.
My IV pole from when I was in the hospital. The white bag is what a bag of TPN looks like that has lipids in it. A TPN bag without lipids is usually yellow.
I have been on TPN many times for different reasons. The first time I was put on it was a hospitalization before my first surgery. I was so very sick and my large intestine was bleeding so much that I got multiple blood transfusions right away. Everything hurt, I was losing a ton of weight, and it was decided to put me on TPN to give my digestive system a rest and see if that would not only reduce the pain but also give it a chance to heal. No luck.
I’ve been put on TPN before major surgery when I’ve been very sick and underweight to help me go through major surgery in a healthier condition. Your body needs all the strength it can get when recovering from surgery.
I have been put on TPN because I have Crohn’s disease in the small bowel. The majority of your nutrients are absorbed in the small bowel but when disease is active, especially in the ileum (which is my j-pouch now), malabsorption can occur. I have lost weight very rapidly because of malabsorption due to active disease and then I am put on TPN.
Most recently I have been on TPN because on top of Crohn’s disease I also have a motility disorder.
This is not TPN, it is a tube feed system. Read on!
In the hospital after a few weeks of TPN and after some recovery from my surgery and once I was done with antibiotics from the infection I got, the only thing holding me back was that I was unable to eat.
Because I have a motility disorder I have these issues quite often and have had to be hospitalized because of them a few times. Motility disorders are even more misunderstood than IBD is, and they seem to act with no rhyme or reason. There are also very few treatment options and treatment usually revolves around symptom management. Often TPN, fluids, pain medication, and NG tubes. Motility diseases and disorders can occur at any age and can give you problems all of the time or come and go. Many patients who have motility disorders are not able to eat by mouth permanently. Others are able to, and everywhere in between. Often patients use tube feeding if there is any motility at all in the digestive tract because it is safer than TPN and better for you. I could write a book on this but if you are interested in more, I have some links I can provide for you with more information.
My IV pole when I was on both TPN and tube feeds.
While I was in the hospital and on TPN we were trying to get me to be able to eat so I could go home. But anything I ate caused me immediate pain, severe abdominal distention, nausea, and often vomiting. The easiest way I can describe it to you is like my system just sort of shuts down. So we decided to do a trial period with an NJ tube (a tube that goes in through your nose and you swallow down into the beginning portion of the small intestine). If the tube feedings with the NJ tube went well then I would have a small operation to have a GJ tube placed - a tube that goes into your abdomen and directly into the small bowel. The picture above are my tube feed bags hanging from my IV pole.
So I had the NJ tube inserted and we started the trial period of tube feeds with it to see if I would tolerate that, and if I did I would have the GJ tube put in. But…I didn’t tolerate it. Even at a very slow rate of 10ml per hour it caused me nausea and since my stomach wasn’t emptying (or at least not how it should) once I had a certain amount of the formula in me I would throw it up. The nausea was the worst part. The tube feeding made me feel so horrible that I laid there in bed the entire time feeling like I couldn’t even lift my head off the pillow or I was going to be sick. I was miserable and lucky for me I have one of the best nurses in the world and she stopped the feedings and told the doctors that she wouldn’t even run them anymore because I was feeling so awful. Thanks, Amie!
Just a random picture of my PICC after it was put in.
So the tube feedings didn’t work and it was back to TPN. In order for my specific insurance to approve going home on TPN they need proof that I was unable to eat anything by mouth. Lucky for me I have years of documentation from 2 different hospitals about having a motility disorder, and we had even shown them that we tried tube feeding but that failed. Eventually my insurance approved me to go home on TPN and a week after that I was set free!
Just hanging out in the hospital one of my last days.
Casually lounging. haha
And so my TPN from home adventure began. This was only 2 hours after I had gotten home. A big van pulled up in my driveway and delivered me a small refrigerator, TPN bags for the week, and a ton of medical supplies. Soon it seemed like my home was feeling more like a hospital than my safe haven.
I wasn’t expecting it, but being attached to an IV pole at home caused me a lot of anxiety. There is something about being reminded that you are sick at home that just didn’t sit right with me this time. More on that later!
A bunch of paper work to read over.
Thanks insurance!!! I mean $450 is just pocket change. ;)
The inside of my new fridge that is now full of TPN bags and additives.
And here I am looking like a terrible mess on night one of my infusions. I was freezing cold at home, my clothes were all too big, and I hadn’t showered in over a week. Off to a good start!
Recovery at home the first week was exhausting. My first shower I was so weak that I sat down in the tub for most of it and just let the water fall on me. That is sad now that I think of it. I never even realize how these things are not normal and I get sad sometimes when I think of myself being that weak and that sick. No one should have to suffer like this.
Excuse the..uh…bathing suit but there was a day that I tried to clean my room and was putting my summer clothes away that I tried on my bathing suit and I often take pictures of my body at different sizes throughout the year. Now I am 10 pounds of fat larger. lol
I came home at 100 pounds even. I was tired, underweight, and so exhausted. One day I went to Target (Not alone, I was driven to Target) and had to go sit down in the food court area because walking around was too much.
I was also freezing cold all of the time from being underweight, no matter what I could not get warm. I even ended up buying a heated mattress cover so that my bed would be warm because no matter how many blankets I used I was shivering at night. It’s like a giant heating pad for your mattress. Best purchase ever!
The night time in general was awful. I couldn’t sleep. Something about being hooked up to my TPN at home caused me anxiety, I was cold, I was underweight and wherever my knee and ankle bones touched when I layed down hurt. I would end up falling asleep between 5-8 in the morning and then getting up a few hours later.
But then! Miracles. I was able to start eating small amounts with no pain. I was gaining my strength back steadily and able to do more. I’m stubborn. I fully admit that. I hate being held back and I am determined to get back to normal. There was even a good week and a half that I totally cheated and took myself off TPN because I was eating everything in site and gaining so much weight.
In truth it’s only been a month that I have been out of the hospital. It’s been up and down. I have had very good days and I have had my bad days. For about 2 weeks now I have been back to where everything I swallow causes me a ton of pain. You’d think that would be enough to stop me from trying to eat but I keep torturing myself. I just got off the phone with the home care team this morning and I am going back to just doing TPN and not eating to see if that helps. It’s so difficult for me. I’m not hungry but I just miss food. The delicious taste of food.
Now my world feels like it’s in limbo. If there is a heaven and heaven is healthy, and there is a hell and hell is the hospital, I feel like I’m stuck in purgatory right now.
There is so much to tell and this story is so long but I will end it here. Until next time…
Vote for me? I love what I do helping patients with chronic illness, more specifically patients who have Crohn’s disease or ulcerative colitis. I’ve been nominated (click to see for what) and I would be honored to have your vote. With it I will be granted a wish, something to help me do what I do better. I know just what I will do with that wish. Please help me out! Click the link and then “like” my picture. By liking my picture you are giving me your vote. Thanks so much!
This is the picture over there that you would want to “like” if you want to vote for me.
1. While you’re there like TGBM’s facebook page if you haven’t already. Trust me, they’re worth it.
2. The winners wishes are granted with a percentage of funds the GMB raises during this quarter. Where does this money come from? Sales from their awesome shirts! Quick,click the link below and go buy some! The more they raise, the more they help people in our community doing great things. It’s a win/win! You look rad in your shirt and they help deserving people. http://thegreatbowelmovement.org/ibd-tshirts/
I have some upcoming events that I would like to tell you about because if I will be in your area we may have the chance of meeting up or you can sign up for some of these events with me. I also need to put it out there due to recent events that I never travel alone, I will always be accompanied, and I only attend events to make friendships and absolutely nothing more. Ever. Period. If I have ever mentioned to you that you cannot meet me you will be asked to leave and escorted out of the event.
Phew! Now that that’s over (awkward) let’s get on with the fun.
CHICAGO: I will be attending Digestive Disease Week on May 3rd and 4th. Digestive Disease Week® (DDW) is the largest and most prestigious meeting in the world for the GI professional. Every year it attracts approximately 15,000 physicians, researchers and academics from around the world. Janssen, Pharmaceutical company of Johnson & Johnson is bringing me and many other of your favorite internet IBD advocates together for some exciting things during DDW. Once I have more of a schedule I will be able to tell you if we can meet somewhere in the city for lunch or coffee. Sounds fun right?!
NEW YORK: I will be in New Rochelle, New York for the 3rd Annual Climb for Crohn’s and Colitis on May 17. Come hang out with me there!
MICHIGAN: If you are a former or current camper or counselor of Camp Oasis (or possible future camper) attend the reunion on April 26th! Take Steps is June 21 and Gut Girl may just show up, and Camp Oasis Michigan is in July.
I think some of Gut Girl’s outfit melted in my trunk during camp.
OHIO: I will be participating in Get Your Guts In Gear August 16-17. Come ride or come crew!
Stay tuned. There is talk of Florida and Tennessee in the works and who knows what else will happen. For more information on any of these events please contact me!
Coping and Recovering from Surgery for Crohn's disease or Ulcerative Colitis
It was recently heavily requested that I do a post about recovering from surgery at home/ways to cope. Understand that the way you recover/cope may be very different from how I do. It may also depend on the type of surgery you had. Recovering from j-pouch surgery is going to be different than adjusting to living with an ostomy, which will be different from recovering from a resection, a strictureplasty, etc. And no two people are the same so two people who had the exact same surgery could recover very differently. With that said here are some things that I think may help;
1. Expect a variety of emotions: You may feel angry, fearful, sad, resentment, etc. All of your feelings are valid feelings to have and I think it is important to recognize them and let yourself feel them so that you can get to a point of moving past the more negative ones. You might wonder what your body is going to work like, look like, if life will ever be “normal” again, and so much more. These are thoughts that almost all of us have. Expect to feel a lot of things as your body recovers and you adjust to life after surgery.
2. Team Work Makes the Dream Work: You may want to push everyone away (I have done it) when things are going terrible but the best thing you can do for yourself is let others in. Find others who have gone through it so you guys can vent/offer advice/laugh and cry together. Some of the things that help me most are text messaging or emailing a friend who is in a similar situation so we can talk it out. If you don’t have friends with IBD consider searching online for support pages. It also helps to get involved in person. Some of my favorite events have been Camp Oasis, Get Your Guts in Gear, and smaller events arranged my us bloggers or smaller foundations. Now I have a team of best friends who have Crohn’s disease or ulcerative colitis and it has been the most helpful thing for when I am feeling alone and like the “normal people” just don’t understand.
3. Don’t be afraid to ask for help: If you feel like you just can’t shake depression or anxiety then take it a step further than finding friends with IBD and get yourself a doctor who can help you. There are now mental health experts who specialize in chronic illness that you can see. Ask your doctor for a referral and remember there is nothing wrong with needing help.
4. Take it Easy: This is advice I need to take myself. Don’t expect to come home and feel like you used to. Allow yourself time to rest, take it slow, don’t push yourself.
5. Hobbies: Recovering from surgery often means being out of school or work for a long period of time. It can feel very isolating when everyone else you know is at work and at school. Sometimes I feel like I am going to go crazy if I have to spend another day alone for hours stuck in bed or on my couch doing nothing with no one else around. Find hobbies that you used to love or pick up some new ones that are easy on the body. Arts and crafts, buying new stationary and sending snail mail, a game on your computer or phone, taking daily walks, reading, movies, etc. This will keep you busy and help those lonely long hours pass by more quickly.
6. Get Outside: For real. You have no idea how much this will help you feel refreshed and a little better about things. If you have the strength to drive I have always liked taking small drives with the music up and the windows down if I can. I also really enjoy nature and some of my best ideas have come when I am outside just taking a walk. If I am really sick I will just sit on my porch or have a loved one drive me around just to get out of the house. You need to get out!
* Reality: Coping with surgery is different for everyone. If you have been really sick and had major surgery that has changed your life there are going to be many thoughts, fears, and emotions. Sometimes recovering and coping is temporary and eventually you will get back to normal life. Sometimes life changes for good. After my surgeries life never went back to what I thought it was going to be. Not only did my body work different and look different but I never was able to get back to school, pursue the career I wanted, and just everything changed. I have been going in and out of the hospital since and I had to make adjustments to my life. It didn’t happen overnight and it took me a lot of getting past anger and resentment and sometimes I still get very angry and resentful. Eventually I found a new career that works with the life I have now, I met my very best friends, and life went on. The most helpful thing for me is having a support system, friends I have in life who have this disease to talk to. It’s hard because life will never be the same and that is difficult for anyone to swallow but I don’t want to live my life angry and I take advantage of any time that I feel decent enough to really enjoy life. There are also those of us out there who have surgery and go on to live in remission ever since and there are people out there where surgery was the best thing for them and they go back to doing everything they used to do. You never know what your story will be!
I know I should be finishing my hospital story but that will have to come later since I still can’t put it into words.
If, like me, your disease has ever been severe, you have probably thought about death. I don’t want to die, I picture myself living a long long life. Us Ringer’s are stubborn that way. My Great Grandma lived past 100 and my Grandma right now is awesome at … 90 something? P.S. My Grandma is on facebook and types in all caps SO SHE CAN SEE THE FONT BETTER SO IT ALWAYS LOOKS LIKE SHE’S YELLING. Oh Gram!
If I were to die someday soon I feel like I have accomplished at least some good things while I have been here. I don’t know what I want my legacy to be or what I want to be remembered for, I just know that I don’t want to go through life just working some job and going through the motions of day to day life. I want to LIVE! I want to laugh, take chances, learn, leave an impression…you get the idea.
Anyway, back to death! You know how I like to pick really uplifting topics to blog about. ;)
I’ve come frighteningly close to death too many times, more than anyone my age should have to come. When I first started dealing with things more severe I didn’t even know how sick I was. I let myself lose (everyone learn the difference between lose and loose please and thank you) so much blood and get so bad that when I finally decided to go to the hospital I was given blood transfusions and a bunch of other stuff to get me to a much healthier point. Over the years through having my surgeries and going through so much I have thought about death a number of times. This last time though really struck me, I guess because it came out of nowhere. It came on a normal day when I was at work and planning on going to dance class later and next thing I knew I was having emergency surgery to keep me alive.
Out of freaking nowhere! Wait. I’m not ready! I can’t die now my house isn’t clean. What about my blog? Who will be in charge of my funeral? Oh it’s funny what you think about when things like this happen. Do you guys have a plan? I’ve always thought about it, have always been meaning to do something about it, but I never have. When you are married they look to the spouse to handle those things but if you’re not married they will most likely look to the parents next. And though I know my parents love me very much in their own way, I don’t think they would really know what I want when I die. I don’t know that their vision of a funeral for me would be my vision. Of course I want to make everyone happy, after all a funeral is more for the living than it is for the dead. On the off chance that I’m around to haunt my funeral I want to enjoy it!
Anyway, I have some paperwork at home and I’m going to write down some things that I have in mind. Not only about when I die but for who gets to make the decisions if I can’t and whatnot. I also need to leave my passwords with someone so that you my friends will always know what is happening even if I can’t tell you myself. <3
#GetYourBellyOut? Taking invisible illness and showing it's visible parts.
It has been asked of me numerous times to participate in #GetYourBellyOut on twitter. But before I do anything as an advocate I like to think about it. I represent myself and I like to represent myself in ways that I am completely comfortable with, but I also represent this community. Because I’ve been asked so many times, I will repost the pictures that I’ve already taken throughout this blog. Which is a crazy bunch of belly pictures! I have to admit that I don’t have any pictures from my time with my ostomy. I wouldn’t let anyone take pictures and I was so sick then that taking pictures was the last thing on my mind. Now I wish I had.
So why haven’t I done it yet? It’s simple really. Y’all have seen my belly probably more than you’ve wanted to! I already have a bunch of pictures on this blog of my stomach in numerous conditions. You can see it bandaged up right after surgery, with staples in it, when my scar is healing, when my scar is healed, when I have a blockage, when I gain weight, and when I lose weight, etc. Are you sick of seeing it yet? haha
Simply, I haven’t posted pictures because I already have and because I don’t feel like taking a new one.
1. I started posting pictures of my stomach years ago to teach you all that you have nothing to be ashamed of. If I am confident in my scars then maybe I could inspire you to be too. So if this hashtag inspires you to post pictures of your stomachs then that is awesome! Go for it. Especially if you haven’t before. There is something liberating about just letting it go. It’s like you’re saying, “Hey world, these are my battle scars because I’ve been through something big!”
2. If it spreads awareness that people who have Crohn’s disease and ulcerative colitis go through very serious things resulting in major surgery. Having to have entire organs removed or parts of organs removed or having them repaired numerous times because of a disease that causes so much damage is better awareness than something that gives the wrong impression.
So enjoy the repost of belly pics. I hope that over the years I have shown in my own way how serious this disease is, and also have inspired people to be more confident in themselves.
This is about what my current condition is. Still red but healing well.
And lastly a belly picture before my surgeries ever happened. Back when my stomach actually had muscle! lol
A blog without images feels strange to me. However I have no images that pertain to this blog so I shall share pictures I’ve taken throughout the past week. Enjoy.
(My friend Sarah spotted this on the train from Colorado to Michigan.)
I have opened my blog countless times over the last week or so and have gotten so overwhelmed that I just can’t write.
(My dog is crazy and sleeps with his paw in his mouth. My cat creeps. My phone takes blurry photos.)
So I kind of just want to let you know that I’m here and fill you in on what I am feeling. I still have to finish my hospital story (which I will at some point) but there is also a ton of other stuff I want to say.
1. I’ve wanted to write a book about IBD for a long time now. But the way my crazy mind works is I JUST HAVE SO MUCH TO SAY that one book will not cut it! Oh no - I must write a memoir about my life with Crohn’s disease. But I also want to write a book geared towards pre-teen/teen girls about growing up with IBD. Then that makes me want to write a book to parents of kids with IBD or at least include a section about that in previous mentioned book. I just want to help and I have so much to say and that’s where it gets too overwhelming and I don’t even start. I’ve been doing this for YEARS. Literally I have been trying to write a book for such a long time. Would you even read it? I hope so. :)
(Here is MY FACE)
2. I don’t know if I make a difference anymore. This thought comes to me from time to time. I sit here and wonder if I have blogged about it all? This blog once started as me sharing my own story, and it’s still mostly that, but as more people started to read this I have also just wanted to educate and so much more. But there are so many times I wonder when this will come to an end. I can’t be here 20 years down the road blogging about my life with Crohn’s disease can I? I wonder if I still make a difference and if I am helping.
3. Sometimes the opposite of that happens and I have SO many topics I want to talk about I don’t know where to begin…so I don’t begin.
(The ad’s at the end of BuzzFeed tell me to go to Hogwarts. It’s like they know…)
4. Life feels overwhelming right now. January - March 11th I was in the hospital and everything has piled up while I checked out for awhile. Real life things like finances, laundry, my house that needs some real spring cleaning. And also emails, messages, snail mail, etc. that I need to respond to. It just feels like so much that I don’t know how to start. It feels like even if I do start that I will never come close to finishing. And I know that I just need to start and that doing anything is better than doing nothing.
So my days start off with me thinking about what I should do. Should I start my thank you cards to all the lovely people who sent something to my PO Box or helped me out financially or should I start my laundry because omg Sara you need to do laundry! Then I think maybe you should start writing that book you’ve always wanted to write but when I think about writing a book that sounds like a crazy task to take on. So then I open up my blog and think about writing a blog but realize I have so much to say but does anyone want to hear it? Or maybe I should make myself look presentable and make a YouTube video. But on what?! And then I just get lost in hours and hours of BuzzFeed. Dammit BuzzFeed, you are like a black hole.
P.S. Who can go from 100 pounds to a lot more than that in a week?
I should start by asking you to forgive me for what I am about to say.
I don’t know where to turn or what to do really. I don’t want to be one of those people. But here I am. I feel dirty.
Ehhhh… I’m just going to leave this here. I’m not going to spread it around the internet but if you happen upon this, I’m asking for help. I’m about to lose where I live because of being in the hospital. I live in a small house with one other person. She owns the house and she is a very good friend for letting me live here with what little I contribute. She works two jobs for her house and I work my job…but I just sat in the hospital for two months and I am unable to get back to work right now and well,
our house is about to be put into foreclosure. We have less than 2 weeks to come up with $1800. To some that may not be a lot, to others it is. To me it is. I feel like crap because this is my fault. It would be better if I could take care of my share and every time I offer to move out and go back to living with my parents I get told I can stay.
I haven’t broken down and cried now for 2 months. I went through this whole hospitalization with a strong face on and maybe that was my way of protecting myself. I’ve been mad, I’ve been angry, I’ve been scared for my life, but I haven’t just broken down and really processed what has happened up until now. I hate it. It’s so unfair. I can’t believe what I have just been through, what I am going through, and how awful it is to not be able to afford living. I honestly feel worthless. I know I am not but I feel it at the moment.
Anyway, if you can help, if you want to help, please help. I could never repay you but the gratitude I would have in my heart would be enormous for whatever it is you could do. I have a paypal, and on this blog in the upper left corner is a +About. (its not where it says About Me but to the very left). If you scroll down there is a donate button.
That is all I will say about this. I hate that I am even posting this. I just don’t know what else to do and this house is one of the first places I have felt at home.
There are always parts of my hospital stays that I don’t remember. I have bits and pieces but trying to remember is like trying to put a puzzle together that doesn’t have all the parts. So I can only share with you what I remember of this, and I may be off on a few of the details.
Somewhere along the line I developed a high fever. High fevers of course are usually a sign of infection. That led to drawing blood from my PICC line and also drawing blood from a seperate location in case the PICC was the source of infection. As I said in my previous post and in posts before that, it’s not an easy thing poking me. Finding a vein in a task is itself so it took a few people and then the stat nurse came.
Not only did I have a high fever but my white blood cell count was off and I had tachycardia. Tachycardia is a high heart rate. Your heart rate should be about between 70-100, over 100 is bad news. I was consistently in the 120’s and up to the 140’s. As I said my memory of everything is a little off because two months in the hospital…well the days just seem to run together. All I know is that there was talk of me being septic, fear of an infection in my PICC line, and some confusion. It seems as though every doctor I asked had a different opinion on the sepsis or whether or not I was septic or something like that, and I guess there is a scale to determine how septic you are? Anyhow I felt awful through all of this and a nice course (by nice I mean awful) of IV flagyl and vancomycin was started.
Flagyl has always made me feel terribly sick and when the vanco was started I had an immediate reaction to it. Luckily my friend Nadia was staying with me that night and I found the words to ask her to go get my nurse because something was wrong. Anyway it was stopped right away and then I did what I always do and I turned to you guys. This time I texted my friend Beth who was also in the hospital the whole time I was so we shared texts daily about how miserable we were. She told me she had the same reaction to vanco and mentioned something about running it slower. So from then on I was on 2 weeks of IV vanco with a dose of IV benedryl before the vanco was started and we ran it at a much slower rate and that seemed to work so I didn’t have a reaction to it.
Oh, I forgot to mention that I had been moved to the 2nd floor. At least I think I was on the 2nd floor when that happened. The 2nd floor is the cardiac floor and with my high heart rate I was told that I had to be moved there because the nurses were specially trained to administer certain kind of medications that I may need in case my heart rate got too high. Awesome that isn’t scary or anything.
Those couple of weeks I was really worried about the sepsis, the antibiotics, and my heart rate. I was also dealing with little to no motility in my intestine which was causing me horrible nausea and vomiting. More on that later! I did come back from the 2nd floor a few days later. My heart rate was still high like it was but I guess maybe stable enough to not need those medications? I don’t know really why it was decided I could go back.
But the scariest thing of all was the night I got moved to the 2nd floor. It was the middle of the night and I was in a deep sleep and medicated and woke up to voices. I opened my eyes and I had two doctors standing over me saying things but I wasn’t awake yet to understand what was going on. Because I was wearing a heart rate monitor and they had noticed my heart rate being too high they came into my room to tell me that I needed to be moved. They also said that in the x-ray I had that day that I had so much air and fluid trapped in my body that it was pushing my diaphram up and my diaphram was pushing on my lungs and kind of deflating them. They told me I would need a new NG tube right away to decompress me and have my lungs expand like they should. But since they had just woke me up from a deep sleep and I was so confused all I could say was that I didn’t need an NG tube. I said this because a few days earlier an NG tube was left as an option for me because I kept throwing up and was nauseous. So they told me if I wanted I could have another NG tube to help alleviate that. Of course I chose not to.
So when these doctors woke me up I thought they were talking about that and I kept saying that no I didn’t want an NG tube and that the doctors told me it was my choice. Apparently that upset one of them and he went on to yell at me about how sick I was and that by looking at me and looking at how distended my stomach was that I needed this NG tube and I didn’t have a choice and my x-ray was explained but all I could understand was “collapsed lungs” and that made me think I had a pneumothorax.
Once I woke up and could understand a bit more I asked the nicer doctor to explain everything to me again and that is when I found out about how high my heart rate was and what my x-ray showed and why I needed an NG tube. So late at night I got myself my 2nd NG tube of my stay.
Looking annoyed with my new NG tube in.
So yeah, that was my next two weeks. I should also mention that the vancomycin made me crazy. I’ve never experienced anything like it in my life but it caused me such confusion. I couldn’t understand where I was at times, couldn’t talk to people right, couldn’t make sense of things, and at other times I would say the craziest of things that I didn’t remember later. I hated it.
Do you ever think about what really goes on during surgery? The positions your body must be in to access certain parts of your body or just that your body is exposed in general and then you have to face the people who saw you in those positions. Also I’m pretty sure you must be naked during surgery or at least really exposed, so who dresses you after? And how hard is it to dress a person who has been put to sleep? All of a sudden you’re awake and in recovery and you have clothes on. Yep, these are the things that run through my mind. I got complimented on my semi-colon tattoo though. haha
So my story left off with me getting through surgery and being brought to my room.
I posted most of my hospital pictures on my personal facebook. I hesitate because lets be honest, I look awful. The ONLY reason I do post them is because people need to see. Our efforts to get people to take Crohn’s disease or ulcerative colitis seriously are hindered if all we do are show pictures of us doing excellent. Yes it’s nice you climbed that mountain or ran that marathon. But WHY? Why did you run that marathon? Because you’ve been here. You’ve suffered too. I love seeing those pictures, they make me happy. I also think these pictures have their place too. This is reality, and that is why I share. For all the people that tell us we don’t look sick. Well, no, maybe we always don’t. But we are, and sometimes we do. I have lost about 10 pounds from when this was taken but in this picture I appear pretty puffy. Probably from the air the put in you during surgery.
To be honest I don’t really remember much of that first day. I don’t remember who all was there but I know I had people who love me with me. I came out of surgery with an NG tube in which was a blessing. My surgeon asked if I wanted it to be put in during surgery and hell-fu*!&ing-yeah I did! If I can avoid being awake while an NG tube is inserted that’s a win in my book. So I woke up with an NG tube in but no catheter. That first day all I remember is the pain I had of having to get out of bed to go to the bathroom. I was so scared because I remember how hard it was during my first surgery after I had my large intestine removed. It’s just so crazy to be cut open, have your intestine taken out of your body, untwisted, and then put back in, then have your body stapled back up.
I couldn’t see my scar because of the bandages but I was happy I made it through with no ostomy. J-pouch still there and still lookin’ good. As good as a j-pouch can look I guess.
The first few days I wasn’t very independent. Getting up meant calling for help to have the NG tube disconnected from suction and then help just to stand on my own two feet. Did I mention the pain? I did, but I’m mentioning it again because OW! Just to stand was a slow process.
My friends at family members had fun at my expense. Sharing with me things I said or what I do during my sleep when I am on pain medication. I even sent this text!
And a lot of other texts very similar to this one. hahaha
I do know on the first day I got my PICC line placed. I was so happy that my surgeon, who knew nothing about me, took my word and granted my wish of giving me a PICC line as soon as possible. I also explained to him my dysmotility problem and some other health history and was very pleased that he listened and let me be a part of the decision making process. And because of my dysmotility TPN was started right away. This also made me happy because IV’s are not even an option for me anymore. I hardly have the veins for them, they always blow, and it takes numerous pokes and usually a stat nurse to get one started only to have it blow not long after. It’s a huge source of anxiety for me.
Then… all of a sudden I couldn’t pee. I mean we scanned my bladder and a ridiculous amount of urine was trapped in me. 1.2 liters to be exact! So guess what I got? A cath, and was it easy? Oh no, why would anything be easy for me? For some reason what is usually a simple process turned into two people staring closely at my lady bits that hadn’t been showered or shaved trying to get this cathedar to go in. The first attempt failed so we gave me a break and tried again later. Again it took a long time, pain, and bleeding, but most of all embarrassment. I cried. I cried of embarrassment and just felt like all the dignity I had left was gone. And believe me, after the things I have been through in this lifetime I didn’t even think I had any dignity left. But I found myself crying after enduring two people working for a long time trying to get me cathed. And a few days later I wound up with a UTI. Joy!
And then there was my scar. I had never had a scar that was raised like this so I was frightened that it would heal like that.
However it looks like this right now. Once the redness and bloating goes away I think it will be just fine.
Have I ever told you how sexy I am with tape on my nose? Here I am walking one of the first days there. I got my catheter, my PCA pump, fluids, TPN, extra electrolytes, and the regular pump traveling around with me.
And really those were my first few days. Things didn’t start getting worse until a week or so later. At first it was just generally recovering from surgery.
Stay tuned for:
Septic and antibiotics
Tachycardia and floor 2 plus a rude awakening and new NG tube
Well that sure is a happy little title to start us off. Leave it to me!
We all know our days are numbered. We know that anything can happen at any time. But normally we don’t go around thinking about that. At least most people don’t.
I am going to share with you the past two months but this is going to have to be broken up into a few different blogs. This is the story of why I had surgery.
I woke up one Wednesday morning in January and got ready for work. I was excited because I had dance class that evening once I got out of work and had really been looking forward to going.
Everything about the day was as it usually is. I made my coffee, I got ready for work, and I drove there. All feeling fine. I got into work and kind of felt bad, had a little pain, but nothing I couldn’t handle. I am used to this after all. So I start my first client at noon who was in for a pedicure. As soon as I sat down to start I was in terrible pain. I tried to keep going but the pain got worse and worse.
Now let me tell you, I can handle pain. I am no sissy when it comes to pain so I was bound and determined to get through this pedicure. But this pain was probably the worst pain I have felt to date. So I made up an excuse and told my client that I needed to go grab a different tool that I left in my manicure station and I walked out of the pedicure room and straight into the office where my friend Sarah who is the operations manager was. I told her that I didn’t know what to do, I was crying, and getting so hot and flush that I was certain I was about to throw up right there in her office. So the office is where I remained while Sarah went to find someone who could finish the pedicure I had just started (how humiliating). As I was in the office I tried sitting down, standing up, leaning against the desk, ANYTHING just to get in some sort of comfortable position but the pain was relentless.
And then we were off. Sarah grabbed my coat and my belongings and she drove me to the hospital. Of course me being me I tried to talk myself out of going into the emergency room. ”I think i’m better (meanwhile dying)”, “I think this will pass”, “It’s probably nothing so we can go home”, but in the end I knew that I had never felt pain like this and knew that I needed to go to the hospital. The only thing that I could think to tell Sarah was “It feels like an emergency in me”. And an emergency it was. And poor Sarah, I hate that I had to put her through that. Me in her car squirming all around and yelping in pain. She did good.
To make this story a little shorter I’m not going to go into all the details of triage and what not but lets just say that normally I get rushed in right away based on my history, but this time we had to wait. Ironic because this time was the first time I needed surgery right away. Of course I didn’t know that at the time.
Anyway, I end up on a stretcher in the hallway because they were over crowded, I finally got pain medication and that really helped. Cool I thought, it’s probably no big deal, maybe a partial blockage or something. After my x-rays some dumb doctor told us that it didn’t look too bad and that they didn’t even know if they’d keep me over night but she would have the surgery team come see me and evaluate whether or not I needed a CT scan. More pain meds, finally got moved into a room, and I was doing swell (I thought).
I took this picture while in the ER. Still not knowing how bad things were.
I told my friend Sarah to go home and I just hung out in that room until it was decided I needed a CT scan so I drank the contrast and had a CT scan. That was when Kathi, the woman I take clogging classes with, showed up. I texted her earlier in the day to let her know I wouldn’t make the class but she decided to come see me at the hospital once class was over. I am so thankful she did…
As she got there the surgery team came in with the results of my CT scan. “You need surgery right now”. This can’t be right. Are you sure? Can we wait until morning just to see if it’s nothing?”
But Dr. Eggenberger, a surgeon I hadn’t met before, explained to me that once the colon is removed there is really only one artery that supplies oxygen and blood flow to the bowel. My bowel had twisted around that artery cutting off the blood and oxygen and if we didn’t operate then the bowel would go necrotic and I would die. Or I would end up losing 90% of my bowel…which sounds pretty much like you’re going to die to me. I was scared. Dr. Flanagan had done my first two major surgeries and him and I had developed a really good relationship. I trusted him and he knew me and my health and my hospitalizations were easy because of him. If I needed something he got it for me. He did everything he could to make my hospital stays more comfortable for me. But Dr. Flanagan has retired and now I had to trust this new doctor who I hadn’t met before but I had no other choice. (But he’s great and I like him a lot).
I started crying and was so scared that I would lose my j-pouch and wake up with an ostomy and I just was not prepared for that. I was so glad Kathi was there because otherwise I would have been completely alone. At this point it was pretty late and I had no time to call people to let them know what was going on. I quickly called my mom’s cell phone and said something like “Hi mom and dad, I’m going into surgery right now. But don’t worry everything will be fine and I will call you when I can.” I knew they would never make it. They live an hour away from the hospital and it was late and they were probably asleep.
Before I knew it I was being wheeled to surgery prep, signed some papers, talked to the anesthesiologist, and that is about all i remember until waking up….
And then I was awake. I was in recovery and had the sweetest nurse there working hard to get my pain under control. Pain control is something that is tricky with me. It happened after my first two surgeries too. But eventually I was stable enough and was brought to a room.
The technical term for what happened is called a volvulus. I hadn’t even heard of that before. See, even I am learning new things. It was an open surgery and while he was in he got rid of some adhesions too. All I remember was asking everyone if I had an ostomy and what happened during the surgery. Is it fixed? Would I be okay?
It’s scary how life can be going just fine and in the blink of an eye it changes. I could have died. Had the pain not been that bad I probably wouldn’t have gone into the hospital. I HATE going to the hospital so I usually try to avoid it. If I had let it go any longer my bowel would have turned necrotic and then what? Out of nowhere, that day I could have died.
I just don’t like this. This feeling of not being able to trust my own body. I am scared to do anything right now. I kept thinking “what if it was my dance classes and somehow my bowel twisted because of that?” Or what did I do to make this happen. I know that it wasn’t anything I did really. That when the colon is missing the small bowel kind of just does it’s own thing without the large bowel there to hold it up. Your intestines are constantly moving and mine just decided to be a jerk. I can’t trust it. I have come close to losing my life so many times now. I’m too young for that.
I’m in the hospital again. A week so far. I had emergency surgery a week ago. It still hasn’t hit me. This really doesn’t seem real and I’m just putting on the strongest face I can muster and trying to get through this because that is all I can do right? I think if I allow myself to think too much about what has happened that it would ruin me. It’s things like this that are so crazy. You just never know what tomorrow has in store for you. Anyway, I’m back at my favorite hospital, St. Joseph Mercy Ann Arbor and I have some of the best people taking care of me. I have so much to say but that will have to come in time. Just wanted to let you know where I’ve been.
For those of you who came, THANK YOU! I was so proud of you girls for chatting with me. I expected a lot of dead air and everyone being afraid to talk but you all were so amazing! I loved all the questions that were coming in. I couldn’t keep up! You deserve the biggest hugs and pats on the back ever! <3
Sooo…here is where I tell you I’m an idiot. I thought I would be able to go back to that page page later and see all your questions and respond to them but I can’t. Or at least I can’t figure out how to yet. :( I don’t want you to feel like I am ignoring ya. So we can do two things:
1. We can do another PJ Party again where I will answer more questions.
2. Message me your questions and I will respond in a blog.
For all of you beautiful girls who attended, what did you think? Your feedback will help me for future things like this. Did you like it? Should I do it again? Did you feel like this helped you in any way? What would you like to see done differently?
I am listening my little muchachas! I love you all soooo much and I am supporting each one of you as we go through life with chronic illness together. You are NEVER alone!
I left the hospital after six months on December 22nd and a few days later it was time to celebrate Christmas. When I left I had only been off TPN for two days. Prior to that it had been months since I had been eating real food except for a few mini Reeses Peanut Butter Cups I would buy at the hospital gift shop as part of my daily routine. In fact, they wanted to send me home on TPN but i had no health insurance and there was no way my family could afford that. So I was sent home to learn how to eat and I was sent home on subutex, a drug normally given to addicts to wean them off and help with withdrawal. That earned me an alert in my files and during an ER trip later on I was refused pain medication and told I was a drug addict until my surgeon showed up to yell at them and have them treat me and remove that from my file.
Don’t even get me started on what six months in a hospital with no heath insurance does to you…
Everything felt different coming home. I was different. Six months is a long time but in a way it’s also not very much time at all. Not enough time to wrap your head around an ostomy, a j-pouch, what surgery does, and everything else that had happened. So while my hospitalization felt like it was forever, in the grand scheme of things not enough time had passed for me to adjust to my new body and my new life. In fact, I didn’t know what life would be like at all.
I didn’t feel like I was part of the festivities at all that holiday season. My mom asked me what I wanted for Christmas and I didn’t know what to tell her. “Clothes I guess”. I needed clothes to fit my new body. I hadn’t put on makeup for about 8 months, I hadn’t styled my hair in just as long. I lived in hospital gowns and sometimes pajamas.
It was a little after Christmas that I took this picture. As you can see my room was decorated for Christmas. Indicated my the reindeer on the door handle. lol
My hair had almost all fallen out and my skin was ghostly white. My body underweight and my skin as pale as a ghost. I forgot what it was like to feel pretty. I forgot what it was like to be normal. To just do very “normal people” things like have routine. Get up, shower, get ready, to go a job or to school, come home and do things. It had been so long.
I was gross.
My mom took me to the mall to look for some things to wear and to my surprise I couldn’t find any jeans that fit until we went into American Eagle Outfitters where they sell size 00. I put them on and they were still baggy but we went with those. I got a pair in 00 and a pair in 0. After that we went to Forver21 where I found long john style pajama pants that were gray with little blue hearts on them. These would be nice to keep me warm and they’re cute. So we got those too. After that we found some sweaters and called it a day. For the next few months any time I needed to wear real clothes I would wear my double zero jeans with the long john pajama pants under them to help hold them up.
Christmas morning came and we were going to my Uncle Tim’s house to see all of my dads side of the family. Today I was going to wear real clothes! I was going to try and do my hair and my makeup.
I went. It was different. I kept thinking about everything I had been through. Weird thoughts like;
This is my first Christmas without a large intestine.
Can I even eat any of this without a colon?
What do people without colons eat?
The whole thing just ended up being a strange day. I enjoyed time with my sister and my cousins but I was so exhausted. This is the most I had done in so long and I hadn’t really been sleeping for months. My Aunt and Uncle ended up offering their guest bedroom to me where I went and fell asleep until my family was ready to leave.
Those were my exact thoughts when I walked out of the hospital on December 22nd after my six month hospital stay. I’m going to start telling the rest of my story here so I have to go back a few years. I want to share with you all what life was like after that hospitalization so prepare for the next series of blogs to be a bit of story sharing.
It was July 6th when I was admitted to the hospital and December 22nd when I left. In so many ways it felt like an eternity and yet at the same time it felt as if time stood still.
When time stands still.
July. I had high hopes of going to see fireworks a few days before for the 4th of July but wasn’t able to make it. At this point I was no longer living. Let me say that I use the word living differently than just meaning: being alive. Living to me is something more then breathing air in and out. It is more than just existing. Living requires quality of life. I was not living back then, I was just alive. No firework shows, no anything. I actually couldn’t walk very well because steroids (or arthritis) (or arthritis from steroids) had caused my ankles to swell and hurt. Arthritis back then was something new to me. It was one of those things I had read about when researching my disease. I knew it could happen but it always felt like I was reading a fictional story and not real life things that could actually happen to me when I’d read those websites. These patients with their arthritis and their severe disease and their surgeries and such. That wasn’t me. I wasn’t that bad. But now I was. I WAS that bad! And that summer was the summer arthritis and I met for the first time. To this day my ankles have never swollen so bad. I couldn’t walk, I cried just to get up, and it took me awhile to get going. Not that I was going anywhere…the only place I was going those days were to and from the bathroom. In and out. In and out. I’d spend my nights like this in the worst pain ever crying even more when I’d see how much blood I was losing. I’d collapse in my bed and shiver from the high fevers. The fevers, the pain, the blood loss, the trips to the bathroom, and the medications that were failing me. That was my life. My existence.
My friend Steve came to visit me one day that summer and we took a walk down my street and I could barely walk. He helped me around as we talked about how sick I had gotten. Steve used to be my workout buddy. We were always in the gym and he used to come up to the dance studio to watch me dance. Now I couldn’t walk. I was embarrassed but I also knew that out of everyone, if he saw me like this, then he could validate for sure that this wasn’t good. Then one day I was crying so hard because my ankles hurt so bad that I was holding onto the railing of the stairs slowly lowering each foot making my way down the stairs to the kitchen. My mom insisted we go to the ER. For weeks she had been pleading with me to go in. Looking back I don’t know what took me so long. But we have this funny way of tricking ourselves into thinking we are not “sick enough” for the hospital. Just wait a little longer…maybe the medication will start working…what will they do anyway?…last time I was in they just sent me home on higher doses of steroids…
But this day I agreed. I couldn’t do it anymore. I still didn’t go in ever thinking that this was the day that would lead to the biggest changes in my life. I wasn’t prepared! I had no idea! I REALLY had no idea just how critically sick I was. So we drove to the ER and I thought I would be coming home a few hours later. I didn’t even know what to say when I showed up.
"Uhhh well. I can’t walk."
"I also have ulcerative colitis (still had the wrong diagnosis back then)"
Once I saw a doctor before they really assessed what was going on they gave me a vicodin for the pain in my ankles (this was also before I had built up a high tolerance to pain medication) and it actually worked. My ankles felt better. Cool! I could walk. I thought I was going home.
But no. They wanted to run some tests on my legs. They wanted to do an ultrasound and check for blood clots and in the meantime they would take my blood and whatnot. And that is when everything changed. They drew my blood and I became much more of a priority to them after that. My white blood cells were crazy high, my blood levels too low. I was going to be admitted.
Still I didn’t think it would turn into six months. I didn’t know that my colon was about to come out! In a short amount of time I was hooked up to an IV where my steroids were transferred from oral to intravenous and the dosage was increased. Not long after that I was given a PCA pump for pain. My very first ever pain pump and OMG THIS IS WHAT I HAD BEEN MISSING OUT ON! For the first time in MONTHS my pain felt better. That night was the first night in I couldn’t remember how long that I didn’t have the pain that I usually had. Not long after that I received blood transfusions to try and get my blood levels up but they didn’t budge. Then they decided to take me off of all food and liquid and see if complete bowel rest would help at all so I was given a PICC line and put on TPN. All of this was new to me back then.
The higher doses of steroids were not helping, the TPN wasn’t helping, and they couldn’t even complete a colonoscopy because the inflammation was so bad that the procedure was too risky. Surgery. I needed surgery. Before I knew it I was talking to a surgeon, meeting an ostomy nurse, getting more blood transfusions so that I’d go into surgery with enough blood, and then I was waking up without a large intestine and with an ostomy.
It all happened so fast. And then you know how the rest of it went. Six months. My world became the hospital. It became the 4 walls of my hospital room and it revolved around being a patient. My world stopped. Time stood still. Yet out there people were living. My friends had all gone back to school to start the fall semester. People were doing things and I wasn’t. Summer ended, Fall came and went, and then it was winter. I left and it was snowing. I hadn’t really been outside in months. Last time I was out here it was warm and sunny.
How did this happen? How did this time pass for everyone else and my time stood still? Christmas was in three days and people had their gifts and they had their trees up and… life! Life was going on out here.
Do you guys ever feel like that? Friends stop calling because life just keeps going on and people keep on living while sickness has stolen your time?
We don't even realize how sick we are until we have no other choice!
I just have so much to say I don’t know where to begin. It’s not typical that I come here to blog and don’t have the words. I usually know what I want to talk about or am able to eloquently write a blog post that makes sense and gets my point across.
Today my brain is as much a mess as my body. Just… I don’t know how I’m doing it. It’s crazy isn’t it? How strong we are without even knowing it. I think back to the months before my surgeries and I was still going to work, still going to classes, still the Vice President of a student org, in a relationship, and trying to have a social life. I did this through excruciating pain, through such low hemoglobin I needed blood transfusions. I did it through blood loss and fevers and taking all these crazy medications. I pushed and pushed up until my body completely gave out and then I had to quit school and work. To this day I have no idea how I did it. I think somehow we don’t even realize how sick we are until we have no other choice. Until it gets so bad that you can’t do anything.
This is how I am feeling right how. I don’t know how it got this way and so fast. The hardest part is right now I just need someone to talk to. Usually I am here to provide a place for all of you - through my videos and my words I want you to know that you are never alone. Whether it’s just reading what I have to say or listening to me talk but never interacting with me, or if it’s sending me an email or message and actually interacting with me. I just want you to have an outlet, a place to get it all out and to not feel alone. Sometimes I forget that this is MY outlet too. And so here I am just writing to you. You don’t have to say a thing back, I just want to talk.
I.don’t.feel.good. I just know something is off, something is not right, but what is it? I’m not losing blood (that I can tell, unless it’s occult blood). I’m not in a ton of abdominal pain. These two things confuse me. They make me wonder if my Crohn’s is the culprit or something else. But then again since the removal of my colon this is how my disease operates. It’s not the insane amount of blood loss and the pain that makes you think you are dying that lands me in the hospital. It usually starts with fatigue. Fatigue so bad that right before I end up in the hospital I have to steady myself with the walls as I walk down the hallway to the bathroom or to my bedroom because if I don’t I just might fall. I tend to get dizzy and fatigued to the point that I can only lay on the couch and get up to get to the bathroom and when I do get up I am so weak that I need to steady myself. Then I start losing weight rapidly which contributes to the fatigue and the dizzyness. The weight loss is a sign that my Crohn’s is active and when I go in there is inflammation and ulceration everywhere. Which indeed means I actually am bleeding internally, I’m just not seeing it. The weight loss happens because I am unable to absorb nutrients due to the inflammation and ulceration in my intestine. Towards the end I also get really crazy hand and foot cramps that actually get so tight that I am unable to unlock my hands or feet and not only does that make me look crazy but it also HURTS. That is when I need to go immediately to the hospital because my electrolytes have gotten so out of whack that I need an IV to fix them. These are how my flare ups have been over the past 5 years. The pain is there, oh yes. The pain is there. But I always feel like I’ve been through worse so no big deal. Sad that you get used to certain things.
My good days have been few and far between and that makes me want to cry. This brings me to another thing I’ve been thinking about. I’ve been thinking about what my life looks like on social media. My instagram pictures show me happy, smiling, stylish, doing things. My facebook pics are the same. But that is everyone. Everyone looks better on social media. We post pictures of trips we take, our outfits of the day, the food we ate, what we bought. Not a lot of us post the reality of what our lives are actually like.
Truth. I give myself two hours to get ready. It takes me that long because I am so tired and have so much trouble with it that I need the extra time. Then I head to work where it’s getting harder and harder to make it through. I sit here tonight feeling so nauseous that I am afraid I’m about to get sick. Then I fear for tomorrow and what that brings and if I will feel worse and how I will get through it and when I will reach my breaking point. I am having so much trouble getting up in the morning and my body hurts so bad. This time of year my arthritis is worse because of the weather but it just feels extra bad right now. That also makes me think I’m in a bad flare up because generally my arthritis flares with my Crohn’s disease.
I look at my calendar and panic. I work Thursday (today), Friday, Saturday, Sunday, and Monday. Tomorrow is Christmas shopping, Saturday is a Camp Oasis counselor holiday reunion, Sunday is a white elephant party, Monday is bar night with some co-workers. I have a feeling I will not make it to any of those extra obligations and if I do it’s just more places where I will be wearing a fake smile. I cancelled two appointments I had yesterday and only made it to a dance class (YES!) because it was later in the evening and because I really really wanted to try it out.
I just can’t do this anymore. I hate to believe that I am this young and my body feels like it does. I want to have the energy of normal people. Going to work shouldn’t be this hard. It shouldn’t be hard at all. Doing extra things should not be difficult. I can’t even make people in my life understand this. Saying “I’m exhausted” isn’t easily understood because they associate it to what they feel like when they are tired. But this isn’t your average tired.
All I want to do is cry. I’m not usually like this. I am usually strong and positive. I just hate this so much at times. On top of the exhaustion, pain, and arthritis I have a cold that I can’t rid myself of because I don’t have the immune system. I need a break. I want a damn break.
Tomorrow I will get up and I know it will be a struggle. I know I will wake to terrible joint pain because I sleep and my body stiffens up and when I wake up I just hurt. I will then take my two hours to try and make myself look like your average glamorous salon girl. Then I will put on my smile and I will give my clients a damn good service and I will love every second of it despite the way I feel. I will love them for giving me a few hours that isn’t focused on this. Then I will go home and I will feel this way all over again.
I’m sorry you guys. I know that you look to me to be positive but you also trust me because I am real. And everyone, EVERYONE, isn’t positive all the time. And that is okay. I will be okay.
Just here to ruffle all your feathers again and this time I’m talking about the CCFA. The Crohn’s & Colitis Foundation of America.
So there’s been a ton of hate going around about the CCFA. Hate posts, revolts, look-at-me-and-my-ccfa-hate-letter, yada yada yada and I keep getting tagged in it like somehow you borrowed my brain and know what i’m thinking up inside of it, and decided that I agree with your CCFA hatred too, and then you post it and I’m all tagged up in that.
Lookie here. We all have opinions and we all feel entitled to them, and the world would be pretty boring if we all agreed with each other all the time. So cool, you have your opinion, and I have mine, and lets all live like little peaceful dolphins and unicorns sliding down rainbows.
So where do I stand? I DON’T hate the CCFA. I do hate the Escape the Stall Campaign, like many of you do too. Even with hearing and understanding why it was chosen, I still hate it. BUT I haven’t forgotten all of the good that the CCFA has done for us too. See, they can’t be perfect. They will never make everyone happy all of the time, that just isn’t possible. Right now I am making some of you guys upset because as an IBD Activist I can’t please everyone. You will disagree with me at times. A National Organization certainly will upset people.
Everyone hating on awareness week. WE WOULDN’T HAVE AWARENESS WEEK without the CCFA. They were the ones who got that passed by the US Senate. Not you. They did that work and because of that we all came together for a week and spread more awareness than most of you did in an entire year. Instead of focusing on small things you dislike about the CCFA that week focus on the fact that we have awareness week at all. They reached out to Frank and the rest of the Round Table to work with us and while maybe they didn’t do it exactly like we wanted them to, it was a step in the right direction. And they helped us promote it, and … well, we have to see the good in the bad. Who knows, maybe one day the President of the CCFA himself will join us for a Round Table. Mr. CCFA President dude sir, you are cordially invited to host an IBD Round Table with us.
They were around long before we were. They are a National Organization. They were one of the only sources of information about Crohn’s disease and ulcerative colitis around before we showed up. They were a resource for lost and scared patients looking for help. THEY started Camp Oasis which is what helped ME turn into who I am today.
Chances are if you’re taking a newer medication that helped put you in and keep you in remission, they probably helped make that happen.
Clinical Trial you say? I bet they helped fund that.
Running a National Organization is hard and it can’t be done perfectly. There is a lot of money involved and a lot of politics involved. While I completely agree with a lot of your thoughts and opinions, I certainly don’t hate the CCFA. Rather than revolting against them, maybe we can work with them. Yes I don’t like certain things they do but I think the only way to change that is to work together. Lives have been changed for the better because of Camp Oasis, Team Challenge, Take Steps, support groups, awareness week, new medications, education, etc. We can’t forget that.
I’m not trying to upset anyone, really. I just wanted to vocalize my opinion and have been thinking about writing this for awhile. I will continue to be me. To share my story of what this disease is like. The good, the bad, and the ugly.
Come hang out with me on Friday, January 3, 2014 at 7:30 PM EST
I’m inviting you to a pajama party in my room! What does that mean exactly? I will be broadcasting live from my room and you get to watch and type in your questions that I will answer while we are hanging out.
Put on your comfiest pajama’s, make yourself a warm delicious drink, and chat with me! I’ll be live and you’ll have an opportunity to ask me questions. This chat is geared towards teen and young adult girls living with Crohn’s disease or ulcerative colitis. We will talk school, relationships, makeup, hair, body image, growing up, etc. Don’t hold back, ask me any question. It’s going to be a ton of fun. Love you girls!
Please visit the link below and let me know you’re attending. If you scroll down a little you’ll see the event. This will not take place unless there is enough interest.
The Differences Between Crohn's Disease and Ulcerative Colitis
Last night during the IBD Round Table I did a little explaining about the differences between ulcerative colitis and Crohn’s disease. I just want to MAKE SURE you understand that these are not the only differences between these two inflammatory bowel diseases. I didn’t throw in everything.
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. ;)
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.
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.
IBD (Crohn's disease and ulcerative colitis) Awareness Week
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!
You Can't Judge How Sick A Person Is By Appearance!
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.
"I Am Sadie" How an Alter Ego Sometimes Gets Me Through The Day
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.
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.
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.
Tis the Season for Anxiety (Sick Co-Workers, Worry, Etc.)
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.
What the world knows about Crohn's disease and ulcerative colitis...
"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.
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 have a question about chron's disease, besides the stomach pain is there any way that it could affect my throat? lately for months on end i have been having throat discomfort and mucus that won't go away, no matter how much i take meds for it?
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!