Inflamed and Untamed

**ETA: After writing this blog I realize it’s all ovah the place! What’s new. ;)

What is going on in this head of mine?

I’ve never claimed my coping mechanisms were healthy but they served a purpose. I have learned how to bury feelings and abolish emotion so fast that it’s almost frightening. I can become mechanical and non-feeling in a blink of an eye, resulting in a hardened person. I don’t like saying that. It makes me feel bad. It makes it sound like I don’t care about anything or anyone which is the furthest thing from the truth. I have a heart that is so big and cares so much for others but when it comes to me and my life and how I deal with things I have watched myself push everything away at times.  The walls I have built up have hurt others. Friends don’t understand me when I go through phases where I seem to drop off of the earth. They take offense to my lack of phone calls or lack of communication. Romantic relationships have suffered because I push everyone away from me at times. I don’t want to talk, I don’t want to open up, I just want to deal on my own. Give me space and i’ll be back… 

I might seem cold and dark and unfeeling but the truth is that during those times I am suffering a lot. I need the patience and understanding of my loved ones. I need to trust that they will still be there when I come out of this. It isn’t that I want to be like this, but for some reason this is who I have become. 

MECHANICAL: Before I had to learn to deal with the trauma IBD would place on me I had to learn how to deal with other less than pleasant events in my life. As a child your brain isn’t fully developed. You are learning and growing and the environment around you plays a huge role in how you adapt. My world was chaos. It was scary and unsafe and I had no way of learning trust. The people who were supposed to protect me and keep me safe from the world were making it unsafe and scary. As a result I went through a lot of things to cope, but in the end I learned how to depend on myself and how to NOT feel. It was easier than feeling. Throughout this I was also growing up sick and through the things I have faced with my disease over my lifetime I have had to become mechanical in a way to deal with them. 

You become robotic (and by you I mean me). When I was marked for where my ostomy would be it was like a dream. It was almost like it wasn’t happening or never happened. I could stare down at the dot on my stomach written in marker marking the spot where my stoma would be, but for some reason I got through surgery mechanically. I went through a lot of surgeries, procedures, complications, transfusions, etc. mechanically because if I let myself feel what was happening I would have lost my marbles. You know that quote that goes something like,

 you never know how strong you are until the only choice you have is to be strong?

It’s like that. There was no other choice, I had to go through these things, and so to get through them my brain has been trained to think it’s no big deal. I can bury down emotion and feelings so deep it’s scary, but they don’t stay buried forever… 

That brings me to the point of this post. Recently I have been having flashbacks (welcome to the crazy head of Sara Ringer). These have been of both things that have happened to me regarding my disease and regarding other things in my life. A couple weeks ago it happened twice on my drive to work and the last time resulted in me crying hysterically and having to call in for that day. That in itself is a HUGE deal to me, because I NEVER let people see me like that. Yet I found myself on the phone crying to our office manager (and one of my best friends) telling her I couldn’t work. 

PTSD is the real deal in my opinion. There has been a lot of talk about it in regards to the IBD community but even with the recent talk I still don’t think there is enough out there about it. Some people like to say it’s PTSD and others will argue that PTSD is only reserved for those who fought for our country. Either way I argue that if you’re not dealing with something now, you’re going to be dealing with it later. I also argue that going through traumatic events like surgeries, long hospital stays, or serious changes to your health qualifies as trauma. 

Here is where I can get into how crazy I am, but I’ll spare you the details. The flashbacks, the triggers that set me off, the things I avoid, etc. What I want to stress is that mental health is just as important as physical health. We have to take care of our whole bodies. I wish certain doctors acknowledged this more. In the hospital I have many triggers and if I explain them to my doctor it is as though I am looked at like I came from outer space. It’s horrible to be made to feel crazier than you already feel inside. My stays in the hospital could be so much better if my anxieties were realized and I was given the help I need. 

May is Mental Health Awareness Month. Last week I took myself to a new doctor to get help for the recent happenings in my head. When I lost my health insurance last fall I also stopped taking my anxiety medications because I couldn’t pay for them. Unfortunately I still had to pay $100 out of pocket for the new medications I am on now, but they have set me up with a patient advocate to get working on getting my insurance back. Having anxiety or depression does not mean you are weak. Having a serious disease and going through what you go through means you are strong! And you are even stronger when you can acknowledge you need help. 

As for me? I am working on undoing the hardened person I have become. It’s not that I don’t want to feel, it’s that I can’t. I certainly don’t want to build up walls or push people away or deal with life on my own. One trauma after another and I am always on edge…

What is PTSD: Post-traumatic Stress Disorder (PTSD) is an anxiety disorder that can occur after you have been through a traumatic event. A traumatic event is something horrible and scary that you see or that happens to you. During this type of event, you think that your life or others’ lives are in danger. You may feel afraid or feel that you have no control over what is happening.

Anyone who has gone through a life-threatening event can develop PTSD. (from http://www.brainlinemilitary.org/content/2008/07/ptsd-fact-sheet-frequently-asked-questions.html?gclid=CIbtlf-oibcCFaNhMgodCS0A9Q)

Symptoms of PTSD:http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/what-are-the-symptoms-of-ptsd.shtml

Love love love my new buttons! Such an amazing birthday present from a wonderful friend! :) 

So you have Crohn’s disease or you have ulcerative colitis.  When I tell people the physical things I have gone through they are shocked.  The blood transfusions, the IV feedings, the surgeries, hospitalizations, etc., all seem brutal, and they are.  But the physical things for me are so much easier than what the disease has actually done to me as a person.

Do you agree? 

Take for instance surgery. Many of us have had complete intestines removed or even more than that.  Some of us less. The physical part of my surgeries were grueling.  The first surgery alone to remove my entire large intestine and rectum which was so diseased.  But then to take my small intestine and reconstruct it and attach it to a different area of my body.  And then to create an ostomy by attaching another part of my small intestine to an opening in my stomach. THAT was a lot to handle. Waking up with a wound half the size of my torso and also an ostomy bag attached to my stomach…

The physical wounds heal.They heal a lot faster than the emotional wounds. The pain goes away. It is how the brain psycologically handles having an ostomy or jpouch that is harder. My body looked different. It behaved different. Do we hate it? Do we love it? Will someone love us? Will life always be this way? 

Think about medications. It’s easy to swallow a pill. It’s not that hard to sit for 2 hours with an IV in my arm while I receive an infusion.  Hell, even injecting myself with medication isn’t that bad.  But what medications do to us is where it hurts. I take remicade. People can get lymphoma from remicade! People risk getting serious infections from it. My immune system is suppressed, I must be careful around sick people. That makes me feel “different”. Methotrexate can cause all sorts of nasty things to happen.  It’s freaking chemotherapy! What about the prednisone almost all of us have taken? It’s the weight gain, the insomnia, the moon face, acne, joint pain, hair loss, infections, cancer, etc. that we have gotten or can get that is the real hard part about taking medication.  

Don’t get me wrong, the physical part of this disease is beyond awful, there is no denying that. But the lasting impact it has on who we are as people can sometimes be harder to heal from.  I like to think that I am a strong person.  I think that in spite of all that I have been through and will go through that I have managed to find all the positive in this that I can.  In a lot of ways I have learned to like myself more because of my disease.  But now, as a leader of this community and interacting with so many of you on a daily basis, I see patterns.  I hear the same stories over and over of fear, embarrassment, pain, depression, and anxiety.  I don’t often get emails about the physical stuff.  I get emails from lonely people who need someone to listen to them.  Someone to understand. You are tired, but you are not just tired from the physical.  You are mentally exhausted.  You are living the lives of people with a chronic illness and that takes a lot out of you that no one in your lives can understand unless they have been through it themselves.  

There is a silver lining to all of this but the difficult parts should not be ignored.  The difficult parts are why we are all here. This blog exists because I know that there are others out there who need support. It is here so that you don’t have to feel so alone and it is here to help me too.  

There are those of us who have grown up with this who have never learned how to grow into real independent adults. 

There are kids who are too sick to go to school. Their friends tease them and ask them questions because they miss so much or because their face is puffy from steroids.  

There are teens in high school and young adults in college who have been forced to grow up too soon. Worrying about things that young people shouldn’t be worried about. 

There are boyfriends and girlfriends fighting with each other and husbands and wives divorcing.  Parents who are struggling financially and children feeling like guilty burdens.  

We worry for what the future has in store. We have anxiety that spirals out of control. We wonder if anyone will accept us for who we are.  We hope our friends don’t forget about us when we are constantly cancelling plans or are away in the hospital.  We go through depression. We face crippling anxiety. We isolate ourselves. We battle self-esteem demons when our bodies drastically change due to surgery, medications, weight fluctuations, or a combination of all three. 

And this is only touching the surface on all the things that you or I have felt.  And though that all just sounded like a bunch of negativity it’s real. You might not be going through this right now but you probably have in the past or will again in the future.  We have all been scared. 

I can only be real with you.  I have said from the beginning that I am honest and real.  Therefore it isn’t positive all the time because I’d be a liar if I said I haven’t struggled with all the same things you struggle with.  I am positive no doubt, but I am also real. And being real means telling you that these things affect me too.  That even with as positive and self-assured as I am that I still go through this.  

What do you think about all this? Is the physical harder than the other stuff? Or is everything else where the real pain lies? 

“Can i get an amen?!” 

Yes, I did in fact just quote Ru Paul.  Actually, I just quoted her for a second time.  If you were part of Tuesday’s IBD chat then you already heard me quote her.

In honor of this months big holiday, my birthday,…just kidding (no i’m not) Valentine’s Day, I am talking love, sex, and relationships just like I did last year.  And once again I am starting with self love.  This is where it starts people! It sounds pretty simple right? Love yourself first so that you have love to give to others.  

Why? And how does this relate to us specifically? 

Self hate is a nasty thing.  And as a person living with Crohn’s disease or ulcerative colitis it’s very easy (too easy) to let it destroy your self-confidence. Medication can cause weight gain, moon face, acne, and other unwanted side-effects.  Mal-absorption or being under nourished can cause extreme weight loss among other unwanted things.  Insides that are bleeding and scarred and full of inflammation cause all of the symptoms of IBD that we are familiar with.  Surgery that forever alters the look of your body and the way it functions.  The tornado that sweeps through life at times and causes loss of friendships, family strife, school problems, job loss, and debt, making us feel worthless and hopeless.  

Are you feeling down yet? Yeah, me too.  All of the above listed and more creates and internal negative dialogue.  And that negative internal talk can destroy us.  We start to loathe ourselves and if we let that go untreated it affects all of our relationships.  We don’t date or put ourselves out there for fear of rejection, or if we do date we tell ourselves that we are not worthy of someone we would like to be with so we settle for bad relationships we don’t want to be in. Or we settle for whoever will take us because we are too afraid to step out of our comfort box and meet someone new and see how they will handle our disease.  It’s not just dating that this affects.  It affects ALL relationships.  Our family, our friendships, our co-workers or classmates.  The way we feel about ourselves plays a huge role in how we treat ourselves and more importantly how we let others treat us.  

I’ve been there. I’ve gone through some pretty terrible times where I absolutely despised myself.  It’s an ugly place to be and since I was so upset with myself and my life I took that anger and hatred out on others.  See! I couldn’t love others or give them the love that they deserved because I didn’t love myself. And loving myself now is always something that I have to work hard on. It’s something I am always practicing.  

I’ve been trying to give you all a boost of confidence lately.  My last video was all about that and in this weeks chat we talked about relationships specifically.  Especially being a person who has undergone ostomy or j-pouch surgery and dating.  There is so much fear about how another person will respond to you. Fear about when to bring your disease up.  Fear about how to get out of the house and do anything because it’s been so long.  Fear about friends who will leave.  Fear about answering the “get to know you” questions because it’s hard to explain to someone new that you don’t work or you have all this debt or you live with your parents, etc.  

There is so much fear. 

I get it. 

But I want to tell you to not give up.  It starts with you.  Put your best foot forward.  I’m not just Sara who has medical debt and never went back to teach and hasn’t worked a lot in the past 5 years and moves in and out of her parents house.  I am funny.  I am really intelligent.  I am artistic and creative and soooo much more than my disease.  I am going to lead with that.  Show people your confidence.  If you are confident in yourself that instills confidence in the way the other person feels about you.  If you act like you’re embarrassed of your disease and that your ostomy (if you have one) or whatever is gross and unacceptable then you are practically telling the other person to feel that way about it too. 

Love yourselves my friends.  You are better than you think you are.  You deserve more than that.

You better werk! 

Hello beautifuls, 

Check out the interview below that I did for Sarah who writes the blog My Jouney With Crohn’s, that you can find here: http://www.myjourneywithcrohns.com/2013/01/interview-with-sara-founder-of.html#

Thanks Sarah for interviewing me and good luck with all that you are doing in our community!!

In anger this morning I immediately picked up my phone and knew exactly who I had to text about the new ad campaign by the CCFA. If there was one friend who would be on the same wavelength as I am, I knew it would be Marisa. 

Marisa and I have been deeply affected by our lives with Crohn’s disease or ulcerative colitis. It has in every way shaped every single area of our lives. It in every way is living life with a traumatic chronic disease. This doesn’t mean that we don’t view ourselves as strong females and that we are just sitting back and feeling sorry for ourselves.  But we cannot deny that our relationships, self-esteem, family, money, careers, choices, mental battles, etc. have not been governed by IBD.  How could they not? Because of the suffering we have gone through, we WANT people to understand how serious this disease is. It’s important to us to feel validated and it’s important that REAL awareness exists.  

To me, I think these ads are a step backward. They show different people in a bathroom stall with a silly little saying about IBD. What this does is fuels the already huge rumor that IBD and IBS are the same things, or at least very similar.  It makes it seem yet again that IBD is just like a tummy ache, food poisoning  or the flu. That we simply spend more time in the bathroom than most and probably have to watch what we eat. *anger face*

Is any awareness better than no awareness?  I have seen so many comments recently that “any awareness is better than no awareness” or something similar.  I disagree.  Hear me out on this - I would rather have no awareness than awareness that leads me down a path of struggling to make people understand that this disease isn’t the same thing as IBS. It’s not the same as a tummy ache. This just feeds those rumors and makes people who don’t know or understand what Crohn’s disease or ulcerative colitis is think that all we do is spend time in the bathroom. I think this is wrong awareness and leads us backward rather than forward. And to me, the bathroom stall thing doesn’t relate to my life at all.  I don’t spend any more time in the bathroom now than a healthy person does. What I do deal with is a motility disorder. I deal with life without a large intestine. I deal with intestinal blockages, bleeding ulcers, damaging inflammation, strictures, infusions of medications, malabsorption, rapid weight loss, terrible pain, arthritis, etc. 

Why do people take cancer seriously? Because they do a good job of showing the realities. Let’s get REAL.  Why can’t we show ads with patients who have Crohn’s disease or ulcerative colitis hooked up to an IV getting an infusion? Giving themselves a shot? Holding the many pills they have to swallow in a days time? Going in to have all or portions of their bowels removed? With an NG tube down their nose and into their stomachs? Emaciated with weight loss? Puffed up on prednisone? With an ostomy bag? With a central line in? “Eating” intravenous food? What about the many other areas of the body that Crohn’s disease and ulcerative colitis affect? Show pictures of mouth ulcers or what happens to the upper GI system. The often crippling arthritis that comes along with it for so many of us. There is just so much more that needs to be said. Instead of a picture of a different character each time in a bathroom stall let’s have a different picture each time of the different realities of life with Crohn’s disease or ulcerative colitis. Then people will know, then people will take it seriously, and then people will want to donate their time and money to help support us. 

Those things would make people think twice about what these diseases actually are. That would raise some real awareness. That would make people understand that this is a serious autoimmune disease that is often debilitating.  It’s not just a bride who is sitting in the bathroom stall because she has a case of the shits. That bride is in there because she has damaging inflammation present in her bowel that is probably accompanied by bleeding ulcers.  She’s probably in excruciating pain and could be filling that toilet bowl up with blood.  She could be too tired to walk down the aisle because of months of bleeding causing her to become anemic and weak.  Perhaps her hair is falling out from malnutrition and medication so she doesn’t look her best and feels unconfident on her wedding day.  Maybe she was worried about how she would look in her dress because steroids have caused her to gain weight all year.  She could be anxious to go on her honeymoon because she fears being away from her doctors and support system while she is sick.  Maybe she has an ostomy and is embarrassed about having sex on her wedding night? THAT is the real story.  

I know that a lot of you disagree with my opinion and I get that.  I love the CCFA, I really do.  I get that for a lot of you this ad is something you feel is a step in the right direction. I can see the marketing behind it and all that jazz, but to me I just do not like it. I went to my friends who I know have suffered as much as I have with this disease and asked them their opinion on it too and they feel the same way as I do.  I’ve been talking to Marisa and Jaime all morning about this and what we wish would have been different. I wonder how many others out there who have gone through so much are angered that their disease has been trivialized to a bathroom stall. The bathroom stall doesn’t even depict all of our stories, it leaves many of us out. So in a way I get where you all come from but in so many ways I do not. 

Find out what Marisa feels about it here: http://keepingthingsinsideisbadformyhealth.wordpress.com/2013/01/10/we-react-to-the-new-ccfa-ad-campaign/

End rant. 

It started with happiness. With energy. With relief. 

I remember sitting in my hospital bed and for the first time in many months feeling relief. I was hooked to a pain pump of dilaudid and for the first time in months I wasn’t in pain. I recall laughing and conversing with the people that came to visit me in my hospital room dropping off gifts for me to spend my time on. Coloring books, crayons, puzzles. In a way I regressed back into a child. I was scared, weak, tiny, and in this big place where finally people were there to take care of me. I could breathe a sigh of relief. I would sit in my hospital bed and color pictures or play with play-doh as if I were a child passing the time, and I was glad to have nurses and doctors trying to make me better. Things are going to be okay I thought. 

It was all fake. The new “energy” that I felt was just high doses of steroids being given to me through my IV. It was the three blood transfusions I had received since I had lost so much blood by then. It was the IV nutrition trying to replenish the lost nutrients. In truth I wasn’t getting better. The steroids were not working, the transfusions didn’t really raise my blood levels, and the TPN feedings were…well, at least they were helping a bit. But no matter, I was happy there in the beginning. I was hooked up to this and that and things were going in and out of my body and just for once it felt good to have more than just myself taking care of me. 

The months prior to those six months I had barely held on. My life was stolen from me. I am in every way a driven, motivated, competitive person in a teeny little blonde girls body. If I am told that I can’t, I do everything to prove that I will. So when my sickness caused me to fail the whole semester, quit my job, and move back into my parents house I was devastated. 

Why did I have 3 blood transfusions? Because every day, without fail, I would stand up from the toilet and stare at a bowl full of blood. A clear sign that my large intestine was bleeding so bad and was so inflamed.  The blood loss caused me to be anemic and extremely weak and tired which resulted in my fun life dwindling down to laying in bed and making trips to either the bathroom or the kitchen. The pain was pain that I never knew could exist and it was there every single day. I was so tired of the pain, and from the pain. I was also going to the bathroom on average 15-20 times a day but at my worst I counted 52 times.  52 times in a day that I stared at my blood loss staring back at me. During the night I would experience high fevers and usually after making several trips to the bathroom I would come back to my bed freezing cold and sit there and convulse because the pain and the fever made that happen.  Once I finally fell asleep I would get night sweats that were so bad it was as though someone had thrown a bucket of water in my bed from sweating out the fever. Then I would wake up the next day and do it all over again. The medications that were not working, the pain, the fevers, the shaking, the laying around watching my life go by. 

I was 95 pounds. I was bleeding internally. I was in excruciating pain.  I had fevers. I couldn’t walk sometimes from the arthritis that often comes with IBD. I was having accidents. 

That, for a young girl was terrible. To me it was the end of the world. I couldn’t tell anyone. HOW could I tell them that blood was coming out of me when I used the bathroom? How could I tell them about the pain, the fevers, the accidents, the medications, etc? I was so embarrassed and so alone. I was so so so alone. 

And ashamed. That too. I don’t know why I felt ashamed, but I did. 

Sick. Embarrassed. Isolated. Disgusted. Ugly. Scared. Alone. Ashamed.  That is what I was. I was no longer a college student on my way to becoming a teacher. No longer a driven, smart, successful young woman. No longer a talented dancer. No longer pretty. I was nothing in my eyes if I had this disease. 

So after months and months of being sick and all these failed medications I was hospitalized.  And in the beginning I was okay, until the strong IV steroids were not helping, my white blood cells were still too high and my blood levels still too low. They say, it’s time to talk to a surgeon Sara…

Enter Doctor F. He explains to me my options as far as surgery. I had three and they all involved removal of my large intestine. Either take out the large intestine and rectum and go for a permanent ostomy, take out the large intestine and connect the small intestine to the rectum, or take out the large intestine and rectum and create a ileo-pouch (j-pouch) out of the small bowel and connect it to the anus.  Option 3 was the winner. Doctor F explains what life should be like after surgery. I am told things like since you have ulcerative colitis (I didn’t. I was misdiagnosed and actually have Crohn’s disease but they didn’t know that back then) that you will no longer have to take medications anymore. You will no longer have to worry about being sick like this. You will live a good life. You should feel better as soon as you wake up from surgery like most patients do. They stop feeling sick, they are relieved because the diseased organ is gone. 

Fast forward a month later. I didn’t get out of the hospital in a weeks time like I was supposed to. I didn’t feel better like I was supposed to. I had this ostomy bag now. I could see my small intestine, right there! Right there sticking out of my stomach. My insides were sticking out of me and I at first didn’t know how to adjust. I went through a little depression, panic about what clothes I would wear, thoughts about my future that was now sure to be lonely because no one would ever love me like this.  It seemed as though nothing was going the way it was supposed to go. My ostomy output was so fast and liquid some nights that I literally had to set my alarm clock on the hour to wake up and empty the bag or it would burst. My family was falling apart. My brother was away, my mom was trying to hold it together and visit me but all I could do was yell at her because I was depressed and angry and took it all out on her. My sister was young and scared and wouldn’t come visit me and my dad was away for long periods of time working. In some ways it brought all of us closer together, but in so many other ways it drove us to our limits. Illness hurts family in so many ways. 

I was supposed to be getting better but my pain was worse. It was scaring me because it was even worse than before I had surgery and this time pain medication hardly helped. I needed a break from the pain so badly because it was keeping me up at night and causing me things mentally that I don’t even know if I can ever explain. All I remember is just wanting out. Wanting to have a test where they would put me to sleep so I could escape, wanting another surgery so that I could have anesthesia and be knocked out, wanting to die. I just wanted it to end so badly and sometimes I wished for death. I wasn’t supposed to have my 2nd surgery to take down my ostomy and start using my j-pouch for three months but I was progressively getting worse. I was back on IV feedings and in constant pain. Soon I was in even worse pain and was constantly throwing up large volumes of bile. It was decided by my surgeon that we had to get me into surgery to fix the problem and that we would take down my ostomy then to see if maybe I would do better without it and just start using my j-pouch early.  

So around month 2 in the hospital I had my second surgery where we found that adhesions were strangling my small bowel and that was causing the extreme pain and constant vomiting of bile.  Again I was told that things would get better now and I lied to myself and tried to believe that it was going to get better. Doctor F tells me that most of his patients who have a j-pouch go to the bathroom a lot more in the beginning. He says to me that my body will take awhile to adjust and that I can expect to use the bathroom about 7-9 times a day and maybe even 1-2 times at night. Me? I don’t go to the bathroom at all. For days I can only just hardly use the bathroom or on a good day I go 2-3 times. This has doctor F stumped and we discover that I have a motility disorder. Then he says we will try a catheter and see if that helps drain my j-pouch because I must be getting backed up. 

So now I am around 90 pounds and I have a tube coming out of my behind. Because of said tube I had to wear a hospital gown with no underwear on because how can you wear underwear over a large tube? Nurses had to empty the waste that the catheter collected. I was mortified. My dignity near gone. The pain? The pain was still there. 

Month three. One day I am laying in my bed with my mom by my side and I start convulsing out of control. In no time nurses were being rushed into my room and I was being covered in an ice blanket. I wake up 3 days later in the ICU not remembering what happened in-between.  Turns out I had spiked a fever of 105 or 106 and was rushed to the ICU because I had a terrible blood infection from my central line. 

Month four. My tooth chips. The first of many due to years of malnutrition, steroids, and vomiting taking it’s toll on my teeth.  I lay in bed running my fingers through my hair pulling out clumps. It’s mechanical. I don’t even care, I do it to pass time. I throw the hair balls on the floor and admire how much is there. I have been wearing adult diapers at night because my body was not used to missing it’s large intestine and it didn’t know how to work. I was so weak and in pain that someone else always had to clean me up and put me back to bed.

Month five: Someone had been doing everything for me for a long time by then. I was showered, dressed, and cleaned by a nurse or a loved one. I wasn’t eating at all but still being fed through my IV. My family eats Thanksgiving dinner in the hospital cafeteria while I watch them because I am still unable to eat. To make matters worse in my family my uncle had recently been diagnosed with brain cancer and had brain surgery and was put down the hall from me in the hospital.  I hardly turned on the lights anymore in my hospital room, I was so depressed. I was tired of the doctors, nurses, and hospital staff waking me up at all hours to draw blood or do vitals when I had just finally caught a wink of sleep. I was tired of the pain and the way that this shook my family and friends. I told everyone to stop visiting me and was a jerk to anyone who did. I was just scared. Scared that I would never get better and that the rest of my life was going to be this way. I knew that I couldn’t live like that. I couldn’t take the pain for much longer. Nurses started to try and cheer me up by doing my hair and makeup or pushing me in a wheelchair around the hospital. 

Month six. Month six not much happened. They were trying to get me off IV feedings and off pain medication. I was working with a pain management specialist and really just existing in the hospital for the TPN and the pain meds. My days consisted of someone pushing me around in a wheelchair or me wandering around by myself.  It was December and my room was ready for Christmas and then…I went home. 

I went home and I got worse. I lost more weight and I slept for hours and I still wore adult diapers at night. But over time I steadily got better. That is a small part of what my six months were like. I don’t know if I have ever described them besides just saying I was in the hospital for six months. I try not to scare others who are going to have surgery but I do want someone out there that has a lot of complications to know that they are not alone. During all of this I didn’t have friends like I do today who have Crohn’s disease or ulcerative colitis. I didn’t know anyone and I was so embarrassed about all of this that I lived it by myself. That is something I try to prevent for all of you. I don’t have a nice ending for this blog, I am tired and need some sleep. 

Goodnight my strong friends. 

December 22nd. It’s one of those dates. We all have them, dates that we remember. Anniversaries, birthdays, deaths…

I remember a lot of dates that relate to my health. I’m sure you do as well. December 22nd was the date that I was finally released from the hospital after six months. I remember it very well, this time I could tell something was different. This time I was going home and it was going to be for good. Before that I had been there six months. I did get discharged a handful of times but came back within a day or two, or a few days tops. This time I knew that I wasn’t coming back, but that didn’t mean things got immediately better. I didn’t come back, well at least not for almost a year.

I believe I shared this photo before. I don’t have many from around that time because I avoided cameras so I end up having to share the same photos over and over. This is probably one of the worst pictures taken of me. My hair had been falling out for months in the hospital that it got so thin that all I could do with it was stick it in a pony tail. My skin was pale and though you can’t tell, I was very underweight. 

You know how certain memories just stand out more vividly than others? This one is one of those. I can recall scents, clothes I was wearing, even thoughts that I had. I can put myself right back in “her” body. By her, I mean me, but I am no longer the person that I was then. I for some reason don’t even feel connected to her because that whole time was so traumatic for me that I think I have somehow tried to block it or escape…the mind is a tricky thing in the way that it protects itself. 

Anyway, I was so weak. Packing up my hospital room was almost too much. Just typing that amazes me. That standing up and gathering the things in my room was such a hard task. But I remember it, and it was. Plus, I was gathering six months of stuffed animals, coloring books, magazines, games, etc. that people had brought me as gifts that I hardly even touched while I was there.  I felt scared to step out into the real world without the hospital…I actually felt safe (or something) there. So there I was all of 80-something pounds trying to pack my things and thinking about life. What would it be like now? I was still so sick. I was still in so much pain. I had just come off intravenous feedings after months of being fed through IV and would have to actually eat real food. Scary. After my surgeries I didn’t have it so easy with my j-pouch (obvs. six months in the hospital tells you that! haha) and I was experiencing incontinence at night almost every night. I was skinny and in pain and worst of all, having to tell my mom what kind of adult diapers I want her to buy me. If this doesn’t take you to low of all lows, I don’t know what will. If that doesn’t make you feel ugly and attractive, congratulations to you, but it sure made me feel that way. 

It was Christmas time and I had decorations all over my hospital room. I had gifts that hospital staff had given to me. I had become used to my routine of walking down to the gift store where I would buy a few mini reeses peanut butter cups and that was all I would eat for the day. Now it was time to leave. I remember the walk to the front where I was being picked up and how it was the first time I had felt cold air that whole year. It was snowing, there were people out there, this was life. It was going on all this time while I had been in that building. That felt strange. It felt strange that I had entered the hospital in early July when it was summer and I was leaving when it was snowing. How did this happen? How was this my life? How did six months go by and all I did was suffer the entire time? 

What now? 

What do I do with all this medical debt? Will I go back to school and become a teacher? What if my body never starts working right? What if I am always in this pain? The pain! I am so tired of the pain. 

December 22nd I got out. I lost more weight because I didn’t have my IV nutrition keeping me hanging on and I was throwing up a lot of what I ate. I slept hours upon hours because my body was so weak and tired from all it had been through and really needed the rest to recover. My hair was thin and hardly there and I had no color to my skin.  I tried so hard to go out with friends but would be in so much pain that I would have to leave or I would get sick and throw up. 

Somehow though after about another month I started being able to eat more and I grew strength back steadily. I learned how to use the muscles in my body again to climb stairs and have the strength to take showers and get ready. Within 3 months I found a part time job where I work now. Those people never knew where I just came from. I didn’t have this blog and I had never been to camp oasis. I started a new life and I moved on. In a way December 22nd is like a birthday. It’s like a new beginning. It’s to me, the day my life began.

“Remember when you were younger and the only thing you could eat was white rice but you made me sneak you to Dairy Queen to get you a strawberry shortcake?” 

That was what my 86 year old beautiful grandma said to me a couple weeks ago as we sat next to each other eating strawberry Belgium waffles. White rice. It was what my doctors told me to eat. Silly right? 

Okay you guys, I have a confession to make. Every time I read a blog of someone who has Crohn’s disease or ulcerative colitis and they are sharing a recipe and calling it a “Crohn’s recipe” or telling people what is “safe” to eat, I roll my eyes. I know I am not the only IBD activist who has this reaction. For me personally, I think it’s completely silly. There are a few reasons I don’t talk about food on my blog or in my videos.

1. I came here to do something different. There are plenty of sources out there who talk about food. You can go there and read about it. But I can give you something here that you can’t get anywhere else (I hope). At least in my videos anyway…*crosses fingers*

2. I don’t get this whole “safe” business. I’m sorry, but to me it comes down to a matter of severity of the disease. Did that food really put you into remission or are you just in remission because the inflammation turned off? Is your case of IBD less severe? Some people just have a very mild case and chalk up their remission to the foods they eat. I wish it had been that easy for me. There have been times when I wasn’t eating a thing for months but being fed TPN. If it were a matter of what I was putting into my body wouldn’t it stop if I were not even eating!? The fact of the matter is my Crohn’s disease (your Crohn’s disease or UC) is an auto-immune disease. Our bodies are in a way attacking themselves by attacking our insides with damaging inflammation. Bleeding open wounds plague my insides. A tomato ain’t gonna turn that off people! If it would I wouldn’t take the medications that I am on. 

3. I’ve tried it. I bought the SCD book years and years ago. Years before I ever had surgery or was ever online doing my thang. It says in one of the first chapters that if it doesn’t work for you in X amount of time then it probably will not work for you. It didn’t.  I have tried vegetarian diets, vegan diets, gluten free, etc. But when it comes down to it I need medication to try and control things. And believe me, I am ALL for doing it the natural route first. And if you keep reading I will explain that. 

4. I am weary of people telling me they “cured” an incurable disease. 

5. Restriction. A lot of those diets involve me thinking about food or restricting myself in ways that are not mentally healthy to who I am personally. 

6. What works for one person does not work for another. Just like medication. IBD varies from person to person which is why remicade (or any other medication) can work for one person and not for another. Finding the right combination of foods is just like finding the right combination of medication. 

7. In a flare-up everything hurts! Bleeding ulcers and inflammation HURTS. Anything passing through that hurts. Narrow portions of bowel can cause pain when food moves through. Lots of things involving IBD can cause pain because of eating. Therefore is it that specific food bothering you or is everything bothering you? Or are softer foods easier to digest, etc? Is it a mechanical problem (strictures, obstruction) or physical problem (active disease)?

8. I am and have always been all for natural health. I gave up meat as a kid. I juice foods currently because I know it’s beneficial. I take vitamins and supplements and make sure to get whole foods in my diet. This isn’t because I think it’s “safe”. It isn’t because I think it will “cure” me. I would still do these things even if I didn’t have Crohn’s disease. I do think that all of these things have an impact on overall health and can be beneficial but I do not think they can cure you. I take anti-inflammatory supplements and eat a variety of foods. Yet still, here I am typing this with no colon. 

9. I don’t blog about it because people tend to feel so passionately about it one way or another. I don’t want to deal with the back and forth of people telling me what is right or wrong when it comes to food. I am a live and let live type of person, and I try to keep an open mind. If what you are doing is working for you then I think that is excellent.  However, I get so tired of the messages and emails I get telling me I should really eat this or that or asking if I have tried this or that. I don’t want this to be a place of argument but rather a place of support and education. I educate you on what I can, and what I can’t (or don’t want to) educate you on is what you should eat. To me it has nothing to do with food. 

So yeah. That my friends is why I do not talk about food. There is so much misunderstanding out there on what Crohn’s disease and ulcerative colitis is. If it were as simple as food I wouldn’t be here writing this blog. I wouldn’t do my videos. I would have never lost my large intestine and I wouldn’t take medication that costs more than I make during the years I am sick. That doesn’t mean that I think you shouldn’t look into food yourself. I did. I tried all sorts of things. I am just not the person to be blogging about it - other people can and do.

Hellooooo everyone!

It’s day 12 of the 12 Days of Holiday’s Giveaway and I am sad to see it end but happy to get back to my normal blogging. Since these prizes are going up so late today you will have until tomorrow at noon to enter to win. The prizes for day 12 are excellent!

1. One winner will receive a giveaway from Forvia! I’m not exactly sure what they will be sending you (love surprises!) but I know it will be worth it. I use Forvia myself and I am really happy with them all around. They have a helpful and friendly staff who goes beyond the call of duty to answer questions for you promptly. They are easy to contact and super swift at sending things out. I especially love their chewable supplements and how everything is made for people like us in mind. They also have been so kind in working with what I do on Inflamed & Untamed so please check them out and like them on facebook, follow them on twitter, and learn about all they have to offer us. 

2. One winner will receive a mini spray from Poo-Pourri and jewelry from Siobhan Harris! 

3. One winner will receive an IBD & Ostomy Awareness ribbon. 

4. One winner will receive a custom Inflamed & Untamed glass ribbon made by Jen Doolan! 

5. One winner will receive an awareness bracelet from Maggie of Let’s Talk IBD!! 

To Enter: PLEASE check out the links below and learn about all the amazing people, companies, and organizations who made todays gifts possible.  They are all each doing their own thing in the IBD community. :) Like them on facebook, follow them on twitter, all that jazz! Then message me with ENTER ME DAY 12 and include your name and email address.  You must include both of those to win a prize!!  

Today’s Links:

Ostomy and IBD Awareness Ribbon on facebook: https://www.facebook.com/pages/IBD-Ostomy-Awareness-Ribbon/113140238765866?fref=ts

Ostomy and IBD Awareness Ribbon on facebook website: http://www.ibdandostomyawarenessribbon.bbnow.org/

Poo-pourri website: http://poopourri.com/

Poo-pourri on facebook: https://www.facebook.com/poopourriworks?fref=ts

Poo-pourri on twitter: https://twitter.com/poopourri1

Maggie’s YouTube channel: http://www.youtube.com/user/LetsTalkIBD

Let’s Talk IBD Facebook: https://www.facebook.com/pages/Lets-Talk-IBD/173363562736069

Mayslove Etsy store: http://www.etsy.com/shop/mayslove

Forvia on facebook: https://www.facebook.com/pages/Forvia/178874062144888?fref=ts

Forvia on twitter: https://twitter.com/ForviaVitamin

Forvia website: http://www.inovera.com/

**Let me know if you’d like to email Jen or Siobhan and I can give you their contact info.

Good luck everyone! 

The winners of day 11 were: Jenna Renee Delbalso who won the Poo-Pourri Santa Giftset, Debra Biesczad who won the glass ribbon, and Tonya Dove Hamman who won the awareness ribbon! 

Jingle Jingle!

The winners from day 9 are Kenda Robin who won the ostomy wrap from Awestomy and Debbi Leahy DeChellis who won the awareness ribbon! Congratulations. :) 

Here are the prizes for today! 

1. Mug and “Tummy Tea” 

Don’t let this picture fool you. This isn’t the exact mug (the one I have is red and has a different design and is taller) I just needed a picture. One winner will get a holiday mug from me full of yummy tummy friendly teas and a holiday card. :) 

2. A second winner will win a Had A Shiny Nose Giftset donated from Maggie Baldwin of Let’s Talk IBD. Comes with a “Sandy Santa” exfoliating body scrub with Brazilian orange oil, Olive Branch shower gel, and Mr Punch soap. To view the kit you can check out this link here

3. IBD & Ostomy Awareness Ribbon! 

About the ribbon via their facebook page: 

A new awareness ribbon is poised to be pinned on lapels to raise awareness for the estimated 1.4 million Americans living with Crohn’s disease or ulcerative colitis, known as Inflammatory Bowel Disease (IBD), and the estimated 600,000-750,000 Americans who have undergone ostomy surgery due to colorectal, bladder cancer, IBD, or birth defects; 75,000 new procedures are performed annually.

To Enter: Message me with ENTER ME DAY 10 and include your name and email address. Be the kind readers I know that I have by being thankful to the lovely people who have made this giveaway possible by donating. 

Today’s Links

Ostomy and IBD Awareness Ribbon on facebook: https://www.facebook.com/pages/IBD-Ostomy-Awareness-Ribbon/113140238765866?fref=ts

Ostomy and IBD Awareness Ribbon on facebook website: http://www.ibdandostomyawarenessribbon.bbnow.org/

Maggie’s YouTube channel: http://www.youtube.com/user/LetsTalkIBD

Let’s Talk IBD Facebook: https://www.facebook.com/pages/Lets-Talk-IBD/173363562736069

Mayslove Etsy store: http://www.etsy.com/shop/mayslove

*Also a special thanks to Samantha who made the teas, mug, and ribbons I have been giving away possible. 

The winner of the Ask Me About My Crohn’s Disease hoodie from day 8 is Ariel McCollum! The winner of the dream catcher and the IBD and Ostomy Awareness Ribbon is Louise Bailey! Congratulations to the both of you. :) 

Here are the prizes for day 9!

1. One female ostomate will win this ostomy wrap from Awestomy and a holiday card from me!  

2. One winner will receive an awareness ribbon from IBD & Ostomy Awareness and a holiday card from me! 

To enter: Start by visiting the links below and liking them on facebook. Remember to show gratitude to all of the great people/orgs/companies who have donated and made this giveaway possible and so awesome! Tell them Sara from Inflamed & Untamed sent you. ;) After that message me with your name and your email address and type enter me day 9. 

**Important for today! If you are a female ostomate please specify in your message. I want the ostomy wrap to go to someone who actually has an ostomy. You will not be entered for the wrap unless you specify. 

Today’s links

Awestomy facebook: https://www.facebook.com/awestomy

 Awestomy website: http://www.awestomy.com/

IBD & Ostomy Awareness Ribbon on facebook: https://www.facebook.com/pages/IBD-Ostomy-Awareness-Ribbon/113140238765866?fref=ts

IBD & Ostomy Awareness Ribbon on facebook website: http://www.ibdandostomyawarenessribbon.bbnow.org/

Hi everyone, 

The winner of the prizes for day 7 are Lucy James who won the Poo-Pourri Santa sprays and Cassandra Chambers Wagner who won the dish cloths and the mini poo-pourri spray. Congratulations!! 

The prizes for today are: 

1. One winner will win a Ask Me About My Crohn’s Disease hoodie from The Great Bowel Movement. 

Here is a little bit about GBM from their facebook page: 

Mission To bring awareness to the 1.4 million Americans who have Crohn’s disease and Colitis by offering resources and apparel to invite conversations about IBD and ostomy. By bringing patients’ stories to light and spreading knowledge of the IBD experience, we are all able to become “Poster Children” for our diseases, and spread awareness through telling our personal stories, educating others, and showing confidence despite chronic illness. Company Overview The Great Bowel Movement offers tools, resources, and apparel to empower those affected by IBD to invite conversations, and use their personal stories of dealing with IBD as a means to spread awareness. GBM also works to empower patients to become more accepting of their diseases and through this, become open and inspire others.

2. One winner will receive a dream catcher created by Ariel McCollum. Ariel also lives with Crohn’s disease and is an ostomate! I have enjoyed getting to know her through my blogging and facebook page and watching her become more and more confident as a woman living with an ostomy. Ariel is Native American and smudges the dream catchers she makes (like a blessing). I even have one that she sent to me earlier this year hanging in my bedroom. 

3. That winner will also receive an IBD and Ostomy Awareness Ribbon! About the ribbon via their facebook page: 

A new awareness ribbon is poised to be pinned on lapels to raise awareness for the estimated 1.4 million Americans living with Crohn’s disease or ulcerative colitis, known as Inflammatory Bowel Disease (IBD), and the estimated 600,000-750,000 Americans who have undergone ostomy surgery due to colorectal, bladder cancer, IBD, or birth defects; 75,000 new procedures are performed annually.

4. Both winners receive a holiday card from me. :) 

To win: Start by looking at the links below and support these people/organizations by liking them on facebook, checking out their websites, and even ordering from them. Be thankful for their generosity and donating to our giveaway to make it possible! 

Then message me and type, ENTER ME DAY 8 and include your name AND email address. You must do both of those things to be entered. Good luck!

Today’s links: 

The Great Bowel Movement website: http://thegreatbowelmovement.org/

The Great Bowel Movement facebook: https://www.facebook.com/TheGreatBM

The Great Bowel Movement twitter: https://twitter.com/TheGreatBM

Ostomy and IBD Awareness Ribbon on facebook: https://www.facebook.com/pages/IBD-Ostomy-Awareness-Ribbon/113140238765866?fref=ts

Ostomy and IBD Awareness Ribbon on facebook website: http://www.ibdandostomyawarenessribbon.bbnow.org/