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.