You must be the change you want to see in the world. - Mahatma Gandhi



RIP Grandma Lewis

 I know that I haven't posted since August, but things have been more than a little crazy. For one, I started nursing school; yes, me, nursing school! Two, my grandma passed away last Monday on Labor Day; so between school and grieving, things have been a bit rough. However, I'm not on here to ask for pity because I've lost a loved one. Everyone does, and in this case, a huge weight and overwhelming calm has came upon our family because my grandma is no longer suffering. She's an angel in Heaven, who's earned her wings, and is protecting my family right now.

As most of you know, my goal/dream in life is to be a nurse. I want to help others who have IBD and are struggling physically, emotionally, and mentally. I've been there, and I'm willing to admit that IBD has had the best of me at one time; you can even ask my doctor. I was afraid of dying. I was afraid of the pain. I was afraid of being completely exposed physically and emotionally to, at the time, people whom I saw as strangers. I hated being in a hospital and the thought of even another stay, overwhelmed me and brought fear into my soul. It's hard to be 17 and hiding a disease from people because it's just that embarrassing. It was even worse when I went away to college, would use the bathroom in my suite, and the girls on my floor could smell it in the hallway. Then, they'd make comments like, "What died on our floor," "My goodness, who did that come out of," and the worst, "Whoever smells like that has a problem and needs help." I was already getting help. I spent a lot of time happy at school, but when I was sick, I was sad, terrified, embarrassed, and depressed. I wasn't attending classes, leaving my dorm room, or enjoying my late teenage years because of Crohn's disease. Guess what was winning...Crohn's disease, and it was only winning because I was letting it.

Here's the thing, you're only as strong as you let yourself be, and you'll only get as far as you allow yourself to go. I wasn't going anywhere. I wanted to start school again. I wanted to work, but I was terrified of failing school and not being able to show up for work because I couldn't leave the bathroom. Let alone, not to mention, the many times I was at work or school, and I couldn't leave the bathroom. Yes, it's embarrassing and tormenting and devastating, but we ONLY see it that way because we allow IBD to control our lives. Once we've taken control and shown IBD that OUR life is OUR life, is when the disease begins to really break down, and you feel healthy enough to do what you want and strive for your dreams.



A few days before the start of nursing school



As I've mentioned before, I have an amazing support system that have encouraged me to overcome Crohn's and fight for my dreams. Honestly, the thought of urine, stool, blood, needles, open wounds, etc. scared the hell out of me. I hated the smell of a hospital facility; it wasn't that of cleanliness but disease, to me at least. I was actually going for a major in Children's Ministry and minor in Child Psychology before I became very ill in the fall of 2007. After hundreds of IVs, nasty nurses, uncontrollable vomiting and bowel movements, hundreds of injections, only God knows how many colonoscopies and endoscopies, and meeting patients that weren't going to get out of the hospital alive (Sorry to put it so bluntly), I decided, with prayer, that nursing is my calling. It took over 4 years, but I am currently in school to get my ASN. I couldn't be happier or more proud of myself. I could have let Crohn's stop me, drop out of school permenently, and just work a menial job the rest of my life. However, that wasn't an option for me, nor is it an option for anyone with IBD or an ostomy because if we give up, we're allowing the disease to win. It doesn't deserve that attention; it deserves a good kick in the ass while we're saying, "Take that! You no longer control me!"

I understand that a lot of you are still struggling with IBD, deciding on having a bowel resection, an ostomy placement, a J-Pouch, K-Pouch, etc. I challenge you to make your decision based on your support system, what you think is best for you, and where you want to go in life. You won't get there if you don't choose to take action. Trust me, it won't be easy, and you'll go through some really tough times and make some very hard decisions. Don't worry, it'll be worth it!



Ready for orientation



You won't get anywhere in this world without fighting for what you believe in, and I believe in fighting for a cure for IBD, fighting for hospital and community education, and fighting for our lives. I wouldn't be here today if it weren't for my team of doctors, surgeons, family, and friends. My doctors gave me the opportunities to choose alternative medicinal routes each time another drug didn't work. My surgical team made sure I was comfortable and well-taken care of after surgery. My friends and family stood by my side the entire time, encouraging me to be okay with my disease and surgery.

I'll tell you something that is close to my heart. I still get angry that I lost a lot of my life to Crohn's. I hold a lot of anger, sometimes, because I missed a lot of average teenage, young adult life changes, but I am also thankful that Crohn's has given me the opportunity to grow spiritually and more maturally (Is that a word?) than others my age. Life isn't easy, and mine has been far from easy; yet, I've fought and fought and fought to get where I want to be. Like Gandhi said, "You must be the change you want to see in the world." Well, I want to see a change in IBD, ostomy education, and by becoming a nurse, I plan on being that change.

Don't fear your dreams because of your disease. Embrace you disease, fight it, go for your goals, and then look IBD in the face and say, "I've won, not you."

I can say that I've won. I've beat Crohn's. I may still have it even though I have a permanent ileostomy, may still take Humira, but I feel better now than I've ever been. My life isn't defined by my disease. My life is defined by my goals and dreams; which I plan on completing. 

Until next time...

Be comfortable. Be sexy. Be you.

I cannot forget my mother, she is my bridge. - Renita Weems




My mom

  I can, honestly, say that I wasn't anything near the perfect child. My mom and I didn't exactly get along in high school, and unfortunately, I know that I put her through hell, caused her unnecessary worry, and wasn't nearly as respectful as I should have been towards the wonderful lady who brought me into this world. I guess, I'm more than sorry for how I treated her when I was a teenager and going through my rebel stage, thinking I was in charge of my life, and had the mindset that nothing could ever happen to me. I was the epitome of the typical teenage brat...LOL! I guess it's a bit funny now, but at the time, I know it was far from funny for my mom. I was sneaking out, experimenting with drugs, drinking, having sex, and was totally oblivious to the consequences of the choices I was making. Sadly, I learned the hard way what it truly means to accept and feel a mother's love, and I wouldn't go back for the world.

I was 16 years old, dating a complete loser, and dealing with a difficult relationship with my dad. My mom took the brunt of all my anger. The relationship I was in was anything but healthy. I was physically abused, mentally abused, emotionally abused, and cheated on. My mom saw right through him and warned me that I was better than what I thought I deserved, but I didn't think so. Sooner, rather than later, I hit rock bottom. I thought I was pregnant, wanted to end the relationship, was furious with my dad because I didn't think he was being the dad I needed, and disappointed in myself because I had allowed myself to stumble for so long. To me, suicide was the only option.



I wouldn't call it luck because having great parents isn't luck, it's what parents are suppose to be. My mom saw me hitting rock bottom, recognized the signs, heard the fear in my voice, knew I wasn't afraid to attempt suicide, and contacted my dad, who ended up calling the police. I was angry at the time because I hated myself, my dad, my brother, and my mom for getting involved. I was 16, and it was my life, who cared what I did with it? They did.

I ended up in the local ER and being admitted to a behavorial facility for children, teens, and adults with mental problems, drug problems, and suicidal attempts or threats. Over 3 weeks, I was able to concentrate solely on myself and began to realize that everything my mom had been doing for me and trying to do for me over the past year had been out of love. You know what I told her when she committed me, "I hate you, and I will never speak to you again." I can only imagine how deep my words cut her heart. She had given birth to me, raised me, protected me, and loved me through good and bad, and I had told her that I hated her. I'll be honest, that is something I will regret until my dying day, even though she is well aware that I didn't mean it.




"Whether our relationship is strained or very hostile or amiable, we need our

mother to conjugate our history, validate our femaleness and guide our way."

-Victoria Seevada





After I was discharged from the behavorial center, I got involved in a local church, was baptized, and decided that the life I was previously living was not for me. It wasn't who I really was, and I was letting everyone down, including myself. I started attending church on a regular basis, had regular counsoling appointments, and began participating in the youth group. I was beginning to feel like me again, the person I was before all the drama, disrespectful attitude, and suicide attempt. My mom supported my decision to get involved even though she isn't a believer in organized religion.

About a year and a half after being discharged from the behavorial center and preparing for a week long retreat in the Smokey Mountains with my youth group, I was diagnosed with Crohn's disease. I remember my first colonoscopy like it was yesterday. I awoke during the procedure screaming in pain. The doctor informed my mom and I that I had Crohn's disease and would need to begin medications and change my diet, a small packet he handed my mom listed foods that I could and could not eat.

My first hospitalization was, unfortunately, on my mom's birthday. She didn't think twice. She took me to the emergency room and stayed with my thoughout all the bloodwork and tests that lead up to my being admitted for a little over a week. She was there every night after work. I don't think I've ever told her, but I was scared and her prescence provided a peacefulness that calmed my nerves. Knowing she was with me made it that much easier to fight my disease.

My second hospitalization was by far the scariest event of my life. I was over 2 hours away from home, had fallen very ill to what I thought was mono. I was unable to walk, eat, or even functon normally. I was too weak to sleep on my top bunk in my dorm room; so I made a bed on the floor, where I spent my day watching Disney movies while my roommate was at class. If I went anywhere, it was to use the bathroom or sit in the shower under scalding hot water for what seemed like hours, bawling my eyes out the whole time. After a trip to the university health center, I was informed that my hemoglobin count was severely low and that I'd have to leave campus because I was too much of a liability. My mom left work to come get me; she drove over 4 hours round trip to take me to our local hospital for treatment. After a terrifying experience with morphine, upsetting a doctor because I refused a rectal exam, and being told I'd be admitted for a blood transfusion, I was transported to a room where I distinctly remember grabbing my mom's hand while tears filled my eyes and saying, "I'm scared." Although I knew she was too, she stayed strong, squeezed my hand and said, "It's going to be okay."



My mom and I at Christmas, 2011



That was the beginning of a very long, stressful, and frightening journey of hospitalizations and hospitalizations. For seven years, my mom didn't use one vacation day for herself. She used every single vacation day and some sick days to spend weeks with me in the hospital. She'd sleep on hard chairs, eat unedible hospital food, and go days without changing her clothes...all for me.

Even though I was 18, my mom was still very active in my health care. My last hospitalization at the local hospital, I began to hemorrhage, and my mom made it very clear to the nurses and doctors who were visiting me that no one was allowed to touch me any longer, that she was demanding a referral to a specialist in Chicago, and if they couldn't provide it, she'd take me herself, against doctor's orders. As was terrified, and although I knew my mom was frightened too, she never once broke in front of me. I had no clue how scared she was until my brother, Bryon, told me after my first surgery.

I don't remember much about my first surgery besides Matthew and my mom coming back with me to the pre-op room. I was so excited to have surgery, to be done with fighting Crohn's disease. I was chipper, cracking jokes, socializing with the nurses, anestheologists, my surgeon, and the nurses who were going to be caring for me while I was under. When I was given Versad to begin my sedation process, I was given the chance to say good-bye to my mom and Matthew. I lost it emotionally, and for the first time in seven years, I saw tears well up in my mom's eyes. Until that point, I'd always considered her Superwoman (and I still do), but right then, I saw her as human, just like anyone else. My mom was scared. She was worried. She loves me so much that she has stayed strong for me for so long that she hasn't been able to break in front of me. I admire her for that. I love her for that. I want to be like her for that.

You see, I wasn't the perfect child. I was mean, disrespectful, and disobedient with my mom, and I would never have been angry at her if she just said, "Screw it, I'm tired of trying, live your life the way you want and don't blame me when you're disappointed with how it has turned out." Instead, she put up with me, protected me from myself, loved me at my worse, supported me through the hardest decisions of my life, and continues to care for me even though I'm out of the house. It's definitely true when they say that a mother's job never ends, but I think they forget to mention that a mother's love never ceases, no matter how bumpy the road may get during the journey.

I can truly say that I'll never be able to repay my mom for everything she's done, the support she's provided, the love she's shown me when things have gotten rough, and the encouragment she's continued to give and give throughout my life. She's my angel, and I don't know where I'd be without her.

This is Rascal Flatt's song "I Won't Let Go." The first time I heard it, I cried my eyes out because it describes the relationship between my mom and I perfectly. She's never let me give up fighting Crohn's when that's all I wanted to do. It's hard being the person fighting Crohn's, but I can only imagine what it's like to me the mom having to hold up your child when they don't have any fight left to go on.

Thank you, mom. I love you more than you'll ever know, and I hope that when I have children, I can be half the mom you've been for me.

Be comfortable. Be sexy. Be you.

Ask yourself: Have you been kind today? Make kindness your daily modus operandi and change your world. - Annie Lennox

Have you ever had one of those inner battles? You know, the battles where what you should do and what you want to do are pulling at your heart strings. It's like there's an angel on one shoulder telling you what is the right thing to do, and there's a devil on the other shoulder telling you to do just the opposite...yes, just like in the movies.

Well, I've been fighting one of those battles since Friday night. I ended up in the emergency room because I've been showing symptoms of C. diff, and I've had this odd reoccurring "rash" for over a year now. It was about time, that I had the time, to get it cultured before it went away again. I was started on Vancomycin for the C. diff and was told to refill my Cipro prescription for the "rash" by my GI out of Chicago. The ER doctor, on the other hand, thought Cipro wasn't worth it because the "rash" was just yeast. I understand the ER doctor has a medical degree, but I know my body. The "rash" wasn't yeast in my opinion, my friend's opinion, or the ER nurse's opinion. I took control of the situation and demanded that the area be cultured.

This is what the "rash" looked like three weeks ago before it went away. Yes, there is some yeast present. The satellite lesions mean yeast, but everywhere that is red, inflamed, raw, and appears to be weeping - that is MRSA. I've been dealing with this infection for over a year, since the beginning of last summer, and my WOCN and I just assumed it was a mixture of heat, humidity, moisture, and my allergy to adhesives. Sadly, we were both wrong.



MRSA and a yeast infection



It blisters, the blisters burst, and they weep a yellow-to-brown fluid. After the blisters burst, the skin underneath is very inflamed, red, and feels like it is on fire.

My barrier won't stick because the skin is too "wet" to adhere to, and I have to cut my barrier to keep the skin exposed so that the area can dry out. It's a major process of cleaning and reapplying my appliance every 24 hours. As you can now see...the frustration and depression and anger that comes along with it. (Hence, my last blog.)

Well, I'm in my Phlebotomy clinical right now. I'm, actually, on my last four days. Not very surprising that something like this would happen now. All of us know that IBD and anything IBD related strikes when we're at our prime. It's pretty much Murphy's Law; for us, anyway.

Working in a hospital setting has been my dream for quite awhile now, and I'm, finally, able to feel my dream in the palms of my hands because of my surgery. You can probably guess how heartbroken I was Sunday when I was told my culture was MRSA positive, and yesterday, when I was told it's definitely MRSA because it's sensitive to Bacitrim, an antibiotic that MRSA responds to.

I had already been debating whether or not to finish out my last four days of clinical C. diff positive. Now that I think about it and sit here writing that I even thought about it, makes me seem so selfish. C. diff is dangerous and can be deadly. If I were to go into clinical, quiet about my diagnosis and treatment, I'd feel so guilty for possibly exposing patients to C. diff. Then, the news arrived about my infection being MRSA. I still wanted to finish my clinical this week. I felt as if I would be letting myself, my family, my teacher, and my supervisor down if I didn't finish.

I ended up back in the ER Sunday night because I was running a fever, vomiting, diarrhea, and all the great things (cue sarcasm) that come with C. diff and MRSA. I was treated with fluids for dehydration and IV Vancomycin for the MRSA and C. diff. Even as I left the hospital, I was still convinced that I'd be finishing my clinical this week.

I woke up yesterday morning still vomiting; so I called off. Then, I found out that I'm being referred to an infectious disease doctor because I've tested positive for MRSA 4 times in 2 years, and that I've had C. diff more times than I can remember at this point. Plus, if you don't have a colon, you're not suppose to be prone to C. diff. Like I said, Murphy's Law. I was still convinced that I'd be in clinical today. Then, I really got to thinking of it when I woke up vomiting again.

I remember being admitted one time, and the nurse was ready to start my IV. Now, going to school for nursing, has kind of put me ahead of the game, and that's not including how many times I've been in the hospital. At this point, I know how things are suppose to be done and how they aren't. This nurse decided that he didn't want to wear gloves while starting my IV. He was aware of my Crohn's history and the drugs I was taking, Cimzia and Methotrexate, both of which compromise your immune system. My friend, Sam, and I freaked out because I could have caught anything that man could have been carrying. If he didn't use gloves with me, then was he using gloves with his other patients or even washing his hands? I was disgusted. It really put things into perspective remembering that moment, and I realized that I had to be honest. It'd be very unethical and selfish of me to continue my clinical without notifying my supervisor and teacher of my conditions at the moment.

I guess, I've been so excited that my dreams are finally falling into place, and I just got carried away and put myself, for once, before others. However, those others are patients, and having been in their position, I know that I would want someone healthy taking care of me. I told my teacher and supervisor this morning of my exact diagnosis. I was expecting to really disappoint them because my supervisor has enough on her plate with the new electronic medical filing system going in that she didn't even want to take in students to begin with. Then, she gets stuck with me...

My teacher went out of her way to get these 13 days for two of us, and I'm the student that chose this spot...

You see, it's very easy to disappoint ourselves because we're used to it, but I think that we don't give ourselves or those around us enough credit sometimes. I just assumed that I'd either disappoint or anger my teacher and supervisor because it puts more work on their plates dealing with me making up four days of clinical, but my supervisor's exact words were, "Your health comes first. We want you here when you're feeling better. I'll allow you to make up your days because I trust you. I already know you know what you're doing." I couldn't have been happier to hear those words. She was more concerned about me getting better than making up my clinical, and she gave me a 2 week time-frame to do it in. I'm blessed.

We're all so used to hearing negative things about how we live with IBD because people don't understand it; that I think some of us, like me, just assume that everyone is going to react the same way. Luckily, that isn't the case. There are people in this world who can empathize with us, and those are the people that, unfortunately, can be few and far between.

I've learned that I need to start giving people a chance and not assuming that they'll all think that I'm faking it or using my disease to get out of working. If either of those were the case, I'd be a pretty worthless person.

Sometimes, in the midst of chaos, we can learn some of life's most valuable lessons. Not everyone is cruel, and kindness is out there; probably a lot more kindness than some of us are used to.

Forget those that hurt you. Remember those that take the time to get to know the real you and treat you kindly.

Be comfortable. Be sexy. Be you.

A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from from his illnesses. - Hippocrates

I was thinking this morning, as I was taking my two high dose antibiotics, Cipro and Vancomycin, with my cup of hot tea that I'm a bit fed up right now. I'm fed up with the Cipro for the continuing Staph infections under my barrier, the C. diff that comes with taking Cipro, and the leaking and lack of adherence of my barrier because of the diarrhea from the C. diff and the weeping of the Staph infection; so last night, I lost it for a moment because I'm sick and tired, right now, of being sick and tired. I'm sure that I'm not the only one who breaks down every now and then. I know I'm not the only one who gets tired of being so strong for myself and others that I feel weak. I can say, for sure, that I'm not the only one who can be so happy for my struggles with IBD one moment because it's transformed me into a better person, but then, at times, I can be so angry that I'm the one fighting this disease when I look around at people who chain smoke, drink daily, do drugs, have unprotected sex and multiple partners, and they're not fighting the battle that I am.

*Now, don't get me wrong. I'm not generalizing. I'm going by personal experiences, people that I've known, and do know, who destroy their bodies daily and treat them as if they'll live forever, with no concern for their health or the future of their health.*

I get to a point, very rarely, where I just find myself so deep in depression and anger, or maybe, it's hate that I am fighting IBD, when I don't drink like a fish, smoke like a train engine, do drugs to escape reality, and go crazy having sex to prove to everyone that "I'm one hot, wanted woman." Well, since Friday, this has been one of those times.

I'm not an angry person, a mean person, a selfish person, or a person who wishes I didn't have Crohn's disease. I take pride in the life God has dealt me. Why would I live my life so angry all of the time if IBD isn't something I can control? That would be a waste of life, a pretty miraculous life.

As I sit here complaining, sorry for being such a downer, I want to share with you some of the quotes, words of wisdom, pictures, music videos, and Bible verses that get me through my toughest times; times where I've been so low that I didn't want to live, times where I've been so low that I've been angry at the world, times so low that I just quit living my life.

As someone suffering from IBD, I've probably heard it all. I remember one time when I was hospitalized for dehydration because I couldn't stop vomiting and had very bad diarrhea. Not only was I in a severe flare up, I had developed C. diff from being on Cipro for ongoing sinus infections and strep throat. Where I was working at the time, if we had to call off, we had to find a sub to fill in for us. I had, literally, called everyone at work and was repeatedly told, "No." I didn't understand because I had subbed for all these people. Why weren't they returning the favor. Later on, after returning to work, I discovered that a co-worker had informed everyone that I wasn't in the hospital but just "faking it."

I'd never wish IBD on anyone because of the emotional lows, physical changes, and struggles that come with it, but this employee had no idea what I was going through. She, actually, thought that Crohn's was just diarrhea and an upset stomach. She believed that I was calling off to spend time away from work with friends. What time would I have for friends? Unless they wanted to join me while I was on the toilet; I saw no friends, other than those that came up to the hospital. I learned a very strong lesson in that moment; people are going to doubt that I have Crohn's because it's an invisible illness, but I no longer let their judgments hurt me because I have the courage to say, "I may not look sick, but my body is at war with itself. Until you know what that feels like, you have no right to judge me, my decisions, my actions, or how I live my life. You weren't dealt the hand I was given because you weren't strong enough to live through it. You'll have your own battles, and I won't judge you based on your struggles; so please, don't judge me based on mine." The way I see it, like the picture says, I'm not meant to judge anyone; so they shouldn't be meant to judge me.

When I was first diagnosed with Crohn's disease, it was about a year after I had been baptized; so I relied a lot on prayer. The more I prayed, the angrier I got with the Lord because He wasn't answering my prayers like I thought He should. I was seventeen-years-old, in high school, working, and living life. What was I suppose to do now that it'd all stopped? After graduating high school, I went on a week long retreat in the Smokey Mountains. I remember not saying much all week because I was so mad at God for not bringing me some miraculous cure. The guest speaker on the last night there spoke about confession, and he said that we will always carry our burdens on our shoulders if we don't confide in one another about what's holding us back from our relationship with God. That night, I confessed my anger to a chaperon, and I remember crying for hours because of my anger with God. I was praying and not receiving answers. I was trying drug after drug and wasn't getting any better. My anger subsided that night because I realized that God has a plan for me, and it's in His time, not mine.

When I decided to have surgery five years later, I remember praying, begging God to tell me that I was making the right decision. I was doing the right thing, that I'd be happy when I woke up from surgery. After agreeing to have surgery, the surgical team left the room, and I knew I had made the right decision. For the first time in five years, I felt a calm come over me. I felt a presence in the room, as if God was telling me, "This is what I've wanted for you. You've learned what I've had planned for your life, and this surgery is going to make you stronger because you've survived the last five years." I cried myself to sleep that night, knowing that I was angry five years ago for no reason. God had my future in His hands the whole time. Lesson learned: we all have a future planned for us, regardless of what we believe in, and that future is unknown until it's present. When it becomes present, we begin to understand why our past prepared us for our future.

As all of us know, and some of us have seen that IBD does kill people, people we know and love. Just because we've been diagnosed with a disease that can hold us back in life, doesn't mean we have to let it hold us back. Like every other human being on this earth, we have goals, dreams, wants, and needs. Reach for your goals. Make your dreams come true. Fight for what you want, and take what you need.

I started college wanting to be an adolescent psychologist and a children's minister. After my first hospital stay, I started taking some medical classes, thinking maybe God's plan for me wasn't what I wanted it to be. After my six month hospital stay, I knew that nursing was my calling. Poop, pee, blood, vomit, sputum, and any other bodily fluid didn't phase me. The odd and nasty smells in a hospital had become second nature. Needles were just a small bump in the road of my treatment. As soon as I felt well enough, I returned to school and began taking classes to get into nursing school. I got my acceptance letter this June, and I'm overjoyed. Crohn's isn't holding me back, and I know you have the strength to show IBD that it isn't in control of your life either. Maybe you want to sky dive, bungee jump, zip wire, ride a roller coaster, or travel the world - DO IT!

Amen! We all have that moment when we realize that we are no longer victims of IBD, but we are survivors of these devastating diseases. It may be that moment when we have accomplished a goal that seemed so out of reach, or it may be when we wake up one morning sick as hell and stand up, get ready, and live the for the day. It's moments like these that allow us to really believe that we're not victims because we're NOT; we NEVER have been. We all have moments where we get angry at IBD, pity ourselves for being so sick, and cry or scream because we're just sick and tired of being sick and tired, but when our best moments outweigh our worst moments, we'll never fall victim to IBD again, no matter that it's a lifelong disease.

If people can look at you, know you're sick, and see you fighting for your life with every second that you've been blessed with, you're setting an example that life is meant to be lived to the fullest regardless of the mountains we have to climb, the struggles we have to endure, and the battles we have to fight. People will see that survivors are so much more than the victims they think we are.

Don't be ashamed of who you are. Love your new body. Come to accept your body for what it has become. You may have gained weight from steroids, but who cares? You're alive. You may be twig thin from not being allowed to eat. Ignore those comments about possibly having an eating disorder because you know the truth. You may have an ostomy because your body thinks your intestines is some awful thing out to kill you. Who cares, that bag is a sign of life and victory. Having a bag doesn't mean you've given up or given in to IBD; it means that you've fought with everything you've had and given every ounce of you energy to giving IBD the finger. Deciding to choose surgery is admirable, fearful but fearless, and courageous! Don't ever doubt your decision, even though you probably will because we all have doubts, because choosing to live over choosing to die slowly from a devastating disease is one decision a lot of people will never have to make in their lives, and I hope, like me, you feel blessed to be one of the few that has been given the choice to fight and defeat IBD.

I'll share two music videos that I love watching or just hearing when I'm down because they're songs that show how human we truly are, but they also show how strong we can actually be. Sometimes, we are so strong for ourselves and those around us that we don't realize that we're falling weak from continuing to be strong. It's okay to let go sometimes and be weak because we are human, and we deserve the right to feel let down, angry, upset, disappointed, etc...

The first video is Thompson Square, Glass. The second video is Lady Antebellum, Hello World.

 

I'll leave you with the Bible verse that touched me the most when I was hitting rock bottom. I know God made sure I heard these verses, Psalm 139:13-18, to calm my heart, my spirit, and my emotions:

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand - when I awake, I am still with you."

Be comfortable. Be sexy. Be you.

Sex is interesting, but it's not totally important. I mean it's not even as important (physically) as excretion. A man can go seventy years without a piece of ass, but he can die in one week without a bowel movement. - Charles Bukowski

I found the title quite appropriate for the subject at hand :-)

Anyway, I'm so sorry for the length between my last post and now. Things have been a bit crazy in my life, and it hasn't just been my Crohn's disease. The stress of a relationship, friendships, school, and Crohn's symptoms have kind of come all together to create the "perfect storm." It's been a very stressful last month and a half, and it's been disappointing not to be able to really share what's going on in my blog because it is a very private situtation. You've probably already noticed that I'm everything but shy; however, I do know when my personal life is meant to stay my personal life and not the worlds to know. Once again, I'm sorry for the absense.

Onto our very personal and, sometimes, embarrassing conversation at hand...sex with an ostomy. I'll begin be giving you a few tips that I've learned from experience since having surgery, and then, I'll share a few tips that I've received from my lovely ostomate friends across the world through Facebook.

Before I give you my tips, I'll begin with quite a funny story that my fiance would probably rather not be shared, but everyone knows what sex is. There's no reason to be ashamed about it either, unless you're not being safe, having multiple partners, and aren't using some form of birth control.

Matthew and I have known each other since we were in elementary school. We dated for quite sometime in high school, and it wasn't the best relationship we could have had together; so we went our separate ways. We didn't speak for three years, face-to-face, after we graduated. After running into each other at a bar after we both turned twenty-one, we decided to give it another shot, and over three years later, we are still going strong. He's supported me through every hospital stay, colonoscopy, endoscopy, medication change, and surgery. He's a pretty great guy!

After my first surgery, I had a lot of complications; one of them being that I developed a severe infection along the stitches where my anus had been sewn shut, and the infection began to leak into my pelvic cavity. I had a Jackson-Pratt drain put in, and I, later, developed MRSA. As you can probably assume, the last thing on my mind was sex. Matt, although he was extremely worried, couldn't stop thinking about sex. (It must be a male thing...hahaha!)

After the drain was removed, I began sleeping in our bed again, and I had returned to school, I felt well enough to try having a sexual relationship again. Of course, I was a little hesistant and very worried about where to put my bag; fold it up under a tight top, let it hang, where a mini-pouch, and so on. I decided that I'd just keep my regular Hollister bag on, empty it, and due the deed. Long story short, after sex, I smelled something funny and started to freak. My worst nightmare had happened, my bag, literally, tore from the flange connecting it to the barrier. Luckily, I was the only one covered in stool. Matthew was very kind about it, brought me new supplies, a wet washcloth, and a dry towel for my to clean up, but I was still a bit humiliated from the experience. Regardless of the fact that I love him, getting used to a bag is hard enough, but then, to have my first sexual experience with a bag be so "eventful."

To make things easier since then, I've discovered a few tricks:

1. Always empty your bag before sex.
2. Using a mini-pouch is usually a better option, but if you don't have any available, wear your usual one and fold it up or wear a tight shirt to hold it against your body.
3. It's best to not have sex immediately after applying your appliance because it hasn't had enough time to get a proper adherence to your body.
4. For females, it will probably be very painful at first because your vaginal muscles have tightened due to surgery; so the first few times will most likely feel like you're losing your virginity again. (Unfortunately, for me, my surgery caused my pelvic to tip towards my spine; so it's always painful.)
5. Find a position that works best for you. Personally, if I'm on top, it hurts much more, and the same goes for doggie-style, but that isn't the case for everyone.
6. Don't push yourself. It took me over 5-6 months to feel comfortable having sex again, and I, still, don't do it regularly because it still isn't comfortable.
7. Don't hesitate to keep your clothes on if it makes you feel more comfortable. Lingerie, sex undies, etc always help to boost your self-esteem after a major surgery when you're ready to get back to being intimate.
8. Don't be ashamed if your stoma decides to go or make it's usual goofy noises during sex. Most of the time, your partner won't even notice it because they're either too into it, or you're both being very loud ;-)
9. Be in charge. If it starts to really hurt, stop. It's your body, and only you can tell what you can handle. There are plenty of other ways to sexually satisfy yourself and your partner if sex isn't comfortable.
10. Your sex life won't end because you have an ostomy. Your significant other shouldn't make you feel ashamed of your body because you've had surgery, and if he/she does, then, he/she isn't worth your time. Be in control of your happiness, pleasure, comfort, and self-esteem. Don't let a man or woman bring you down because a disease has changed your body.

While I was thinking of an idea for my next blog; yes, I had this planned out over a month ago; a conversation on sex was brought up in one of my Facebook support groups, My Bag & I (https://www.facebook.com/groups/300190663338906/), a group started by two very brave, young girls, Meg Price, who writes about her stoma, Stanley, at www.stanleystoma.wordpress.com, and Amy Robson, who also has her own blog, staceystoma.wordpress.com. Anyway, the conversation was a hit, and I think all of the ladies (and some of the men) took quite a few great things away from the conversation.

• If you have scar tissue from having an open surgery, doggie-style is probably going to be a very painful sex position.
• Yes, we're still human; so even though we've had our guts taken out, literally, we still have sexual desires, and sometimes, they're not as easy to succumb too because of the pain and fatigue from surgery.
• There are many sites available that provide lingerie specifically for ostomates, http://www.vblush.com/, http://www.ostomysecrets.com/, and many more; so there's no room for shame, if you can put a little spice into your sex life with some sexy lingerie suited just for your body.
• It will probably take quite awhile for your sex drive to come back. Think about it, you've had a major surgery, you're probably on narcotics, and you may be on preventative medications that suppress your sex drive anyways.
• Your sex drive will return. You may have to force it at first, but it does come back. It will be enjoyable again.
• Even if you don't feel like having sex, there's no reason you can't spoil your loved one with a little TLC, if you know what I mean, every once in awhile to keep him/her satisfied. If they're supportive, I doubt they care if the sex is there because they're witnessing what you're going through, but sometimes, it's nice to show them that they still mean something to you.
• Last but not least, sex isn't everything. If you're not ready, don't do it. If you're scared, don't do it. If you haven't been released by your doctor, don't do it. And I can't believe I have to say this, but your stoma isn't a new hole to discover sexually...yes, people have tried.

Until next time...

Be comfortable. Be sexy. Be you.

The secret to humor is surprise. - Aristotle

I thought, in honor of World IBD Day on Saturday, May 19th, and National IBD Day today, May 23rd, that it would be fun to post some of my most embarrassing stories living with IBD and an ileostomy.

Today is about celebrating our difference as IBD, ostomy, JPouch, KPouch, resection patients. Today is about loving who we are either DESPITE our diseases and surgeries or BECAUSE of our diseases and surgeries. It's completely up to you.

I'm one who loves myself because of my disease and ileostomy. I can't help but be proud of who I've become through fighting Crohn's because it's made me a stronger, more resilient person. My compassion for others has grown because of my disease. I can relate to those who are fighting different diseases because I know what it's like to go through medications like candy and live in the hospital. Two things I'm not exactly proud of, but they've taught me to appreciate life. Life can, so easily, be taken for granted. However, through Crohn's, I've found every reason to enjoy every, single moment in my life.

Now, back to my embarrassing stories, and I'm, honestly, hoping you get a kick out of these because I laugh about them now. At first, not so much...

I'll start with a very awkward moment after my first surgery, in October of 2010:

I had, unfortunately, caught a nasty flu that was going around when I came home in late November. My bag was filling completely every 20-30 minutes. I was still on pain medicine, and I couldn't stay awake to keep myself hydrated or empty my bag often enough, two ingredients in the recipe for accident/leak disaster. Anyway, earlier in the night, I had gotten up, with my fiance's help, to go to the bathroom. I was so severely dehydrated that I couldn't empty my own bag and passed out sitting on the toilet. Matt was concerned, wanting to take me to the hospital or dial 911. I convinced him that I would be fine as long as I could rehydrate myself and stay awake, ingredient three. I failed to do either. Around 5:00 am, I woke up to find my bag filled to the brim with diarrhea. Not wanting to wake Matt, I decided that I'd get up on my own, empty my bag, and return to the couch without waking him, bad idea. I stood up and passed out. The force of my body hitting the livingroom floor caused my bag to disconnect from the two-piece system. You guessed it, I covered the couch, livingroom floor, my dog's toys and treats, and the blankets in stool. Matt, luckily, was saved from any flying matter. I cried my eyes out, suddenly aware and embarassed of the situation. Matt was kind, cleaned up the mess and got me settled. Being stubborn, it was 3 more days before I went to the hospital. I was very sick, severely dehydrated, and lucky that I didn't cause more permanent damage to my body.

A leak I had the other night that went under the radar for a few hours

I think that we can all agree that we hate leaks when it comes to our appliance. They can be embarrassing if they happen in public, annoying if not caught in time, and aggravating because it seems like such a waste of supplies. Well, here's one leak that I'll never forget:

Jackson-Pratt Drain

After surgery, I developed a hematoma along my stitches where the surgeon had removed large skin tags and sewed my anus shut. The hematoma became infected and began to leak into my pelvic cavity. I had to have a Jackson-Pratt drain placed to drain my pelvic cavity of the accumulating infectious fluid. It's placed in radiology and requires sedation because a tube is placed through the muscle into the area that needs to be drained. Then, a negative suction allows the fluid to flow through the tube into the drain that the patient empties regularly. Sounds a lot worse than it is, trust me. Anyway, about a week before Christmas, my JP drain malfunctioned. The negative suction had been compromised due to a leak in the line. I was in some of the worst pain I've ever been in because infectious fluid was building in my pelvic cavity. I went in to see my IBD nurse, who immediately sent me down to radiology for a replacement JP drain. My fiance's dad, Scott, who had taken me was in for a surprise because we had not expected the problem to be taken care of so quickly. My JP drain was replaced, and I went home still in an excrutiatingly large amount of pain. It was hard to walk, let alone sit; so I made myself comfortable at Matt's parent's home on their couch. That night, I took some Tylenol 3 and fell asleep. To my surprise, I awoke the next morning covered in stool. I had slept through the night, neglecting to get up and empty my bag. My bag had leaked, covering myself, the couch, and the blankets I had in stool. I woke up Matt's mom to tell her, my exact words, "I pooped on the couch." Again, I was crying. Just like Matt, Judy got up and cleaned the couch, even helping me to get myself together. Sadly, I ended up with MRSA from having the JP drain replaced and ended up in the hospital right before Christmas.

Matthew and I in Kentucky at the Falls

Last but, certainly, not least, I'll share a story about having an accident before I had surgery. I know it's quite common for IBD patients to have accidents, but until this accident, I had been very discreet about accidents. I'd carry extra clothing and underwear to make sure people wouldn't know that I'd crapped myself if it did happen. However, I will say that I'm glad this accident happened in mixed company because guys tend to "shart" quite often:

My fiance had agreed to watch a friend's house for the week while they were out of town. My brother was in town from Kentucky, and Matt and I thought it'd be a good idea for the 3 of us to just chill and catch up. After work, I picked up my brother and headed about an hour south of town to this house in the country. For dinner, we decided to go into town; which was about 30 or more minutes away. After dinner, we stopped at Walgreen's to get socks and PJs; I hadn't brought anything to the house because I had to go home in the morning to meet my visiting nurse for my Cimzia injection. I was, also, on Methotrexate at the time. Matt and Bryon bought a case of beet at the local liquor store, and we started to drive to Matt's friend's house. About 15 minutes into the ride, sitting in the middle of the truck, I realized that I had to go to the bathroom, NOW. I told Matthew that he better speed it up, or I was going to crap my pants. My brother, Bryon, and Matt sure got a kick out of me complaining that I wasn't going to be able to hold in my poop. At one point, I even suggested that Matt pull over; so I could just poop on the side of the road. To no avail...I didn't make it home, and I pooped my pants. I was so mad at Matthew because he didn't understand that when I had to go, I had to go. I've realized, now, that it wasn't his fault. If a cop had drove by and seen me pooping on the side of the road, I would've went to jail for indecent exposure; I'd rather poop my pants. Bryon, Matthew, and I just laugh about it now.



Bryon and I



As you can see, I've had my fair share of embarrassing stories. I've only shared three, but they're three that I'll never forget. Three stories that I, now, share with people because I find them extremely funny. I believe that one of the ways to come to terms with your disease, your ostomy, or your surgery is to find humor in the moments that, sometimes, bring us down. Humor brings happiness into life. If your friends and family see that you can laugh at yourself, your disease, your ostomy, and your surgery, they'll feel more comfortable discussing these things with you. Humor brings about awareness. It's unnecessary that our condition and the treatments associated with it have such a negative stigma because "everybody poops."

If you're comfortable, I'd love to hear some of your "poop stories." Feel free to share them in the comments section below. As IBD patients, we all have them. Be proud of who you are and where you've come from fighting IBD.

Be comfortable. Be sexy. Be you.

PS: Here's a great video from Gut Inspired's celebration of World IBD Day.

Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.

I'd like to introduce you all to Donna Mear, an advocate for IBD and ostomies. She is a brave woman who has fought and beat Ulcerative colitis. She's on a mission to prove to the world that ostomates are still beautiful people, males and females, and she will be showing the world in 29 days that ostomates can do ANYTHING they put their minds to, including zip wiring off the Tyne Bridge. Yes, this woman has plenty of GUTS, and here is her story:

I'm 32 years old, married to Paul, and have 2 beautiful children, Kieran (9 years old) and Evangelina (4 years old). I was diagnosed with Ulcerative colitis in 2007 whilst 7 months pregnant with my daughter, Evangelina. Although, since childhood, I was diagnosed with IBS and hospitalized a few times due to it. My GP put my problems down to pregnancy! I lost 5 pints of blood from my behind; I was in a bad way and hospitalized. Surgery was mentioned, then, but I fought against it. Breastfeeding quickly brought my disease into remission, but I was never "normal." When I stopped feeding her in Easter of 2010, I quickly fell ill again. I worked my way through a lot of standard drugs for UC whilst on steroids. The steroids were tapered to see if they had made an impact, none did, and my dose was increased again! Thirteen months later, after being worn down, I, eventually, gave into surgery. I had my colon removed, and my ileostomy, Squirt, was formed on 5th of May 2011 at Rake Lane Hospital by the wonderful Mr. Box.

Since surgery, Squirt has given me my life back, and I have had many adventures!

If you'd like to contact Donna, you can do so through her website, http://www.thegeordieostomates.webeden.co.uk/, or her blog, http://squirtsblog.wordpress.com/. She is also available on Facebook, www.facebook.com/meardonna, and has a YouTube channel under the name, meardonna.

If you'd like to sponsor Donna as she prepares to zip wire off the Tyne Bridge, you can do so at www.sponsor-me.org/meardonna. Proceeds go to National Association for Colitis and Crohn's Disease, British Lung Foundation London, Ostomy Lifestyle, and Stomawise. Every little bit helps!

Donna has supplied me with some pictures; so I can introduce you to some new fashion tips on disguising your ostomy appliance in public.

Left

Left: Donna is wearing a flowing dress with a beautiful disguising pattern, black nylons (tights), and bold accessories. In a flowing dress, your ostomy is easily disguised because there is no fabric laying directly against your appliance; which usually causes your appliance to be a little bit visible. The bold pattern keeps your eyes moving over the entire dress instead of concentrating on one area. The black nylons (tights) are a great accessory to wear that can provide support for your appliance while wearing a dress. Her jacket and accessories, also, give your eyes direction away from her abdomen, forcing you to concentrate on the beauty of the outfit rather than searching for her ostomy. Right: Donna is wearing another flowing item, but this time, she adds a small belt to accentuate her waist line. Yes, it can be a bit risky if you're to wear a tighter garment, but she adds this accentuating touch very nicely by tying the belt loosely. Again, Donna is wearing bold accessories to draw your attention elsewhere. She is also wearing the perfect jacket; it lays right where her waist is, causing a narrowing effect of her waist, drawing your attention to the belt accessory.



Right



I want to thank Donna for showing us that with a few bold accessories, disguising prints, and flattering jackets, any of us can step outside the house proud of what we look like because our ostomy is invisible to the public.

Be comfortable. Be Sexy. Be you.