I’m backkkk, sort of.

Well I’ve been M.I.A. for a while now. I apologize for that. My life has been anything but exciting and I have had a lot of other stuff on my mind, i.e. school, work, what I’m going to do with my future… I will tell you, I have never been happier to see this box and syringe in my life. ImageOkay, now I’m just sounding like a druggie (lol). consuming. But this is probably one of the most confident decisions I’ve made so far. I think I told you all I didn’t go through with the fecal transplant trial, there just wasn’t enough information for me… Hense, the word “trial”. Well before when I was on Stelara which is also sort of an experimental medication for Crohn’s, although is approved by the FDA, I felt amazing. And when I say amazing, I had so much energy, ate like a pig, and was loving life. It was great. So, after my washout period awaiting the trial, I thought back to when I was feeling good and wondered why in God’s name did I ever stop taking that wonderful drug. The answer was: the results of my colonoscopy and my doctor’s better judgement of what my insides appeared to look like compared to my outsides (typical). So yada yadaaaa he made me come off of this. Same old; on to the next one. After my decision to not undergo the trial I basically demanded to be put back on Stelara. Although I put 100% trust in my doctor, I know my body better than anyone else I don’t care how much education you’ve had. I’ve learned so much over the years and with this disease you NEED to know your body. And for all of you newly diagnosed, you will know exactly what I’m talking about a few years from now. Trust me. I’m kind of babbling on, sorry. But anyways, a month into Stelara I’m definitely feeling better but I still get that urge to go to the bathroom and there’s a few other things I’d actually like all you Crohnies opinions on. Here’s a few questions for all y’allllll…

Sometimes I just get wicked hot and feverish. It’s not a hot flash (believe me I’ve experienced those while on prednisone) but it’s more like sweaty and I feel like I have a fever. But, to make it clear I never show a fever. I’ve had people tell me it’s because of being on an immunosuppressant but I’m not sure.. Do any of you experience this?

Also, I work really hard on my body and staying fit. I eat very healthy 95% of the time yet I cannot seem to get rid of my bloat in my stomach. People tell me I’m crazy and I do not look bloated but I can feel it and sometimes I do look 5 months pregnant, scary I know. It mostly comes about when I’m not feeling too well. I’ve taken gas-x and all of those gas relieving OTC meds but I don’t think it’s that. I drink plenty of fluids too. I’ve heard though that Crohn’s patients tend to have a little “pouch” or their abdomen area appear to be swollen. It’s frustrating because I know it’s not “weight” and I just want to know what it is! GAHH. So I guess my question is have any of you heard of this or experienced this? Any suggestions or anything would be helpful!

Despite all that. As my friends and peers have been looking forward to this time in their life, I have been dreading it. College graduation time. The reason why is because my damn stomach has let me barely make it through each semester at a time. Granted these past few years have been the absolute hardest trying to control my disease but I look back and wish I had just pushed myself through it all. That’s kind of a stupid thought because at the time, sitting in the hospital bed every few months it was kind of beyond my control. And it’s not about having the “college experience”. It’s about the future, and what it has to hold for me. At this point… It’s not too much. I especially dread it when people ask what I’m going to school for or any of those “what my future holds” kind of things. I never know what to say and am frankly kind of embarrassed. I’m not complaining, I guess I’m just wishing I could be wearing a cap and gown these few weekends like all of my friends are.

Looking at the other end of it all I am actually really excited because I’m finally going back to school in the fall. Hoping this Stelara works and I have no more surprise hospitalizations coming up. I am very impatient when it comes to this stuff. I want to get it done now and make a life for myself. Not rushing my life away by any means, but I just know what I want for my future. Not only job wise, but just my expectations for life, happiness, and everything in general. I keep trying to tell myself it’s going to happen soon enough, and I know it will. I will figure it out. I truly believe and I know I’ve told you guys a thousand times over everything happens for a reason. I’ve been trying to live like it’s my last day. Cliché and a little corny, I know, but it’s so true. You never know. You could get in a car accident or be handed something life changing, or for all we know the world could end. Ha, at the rate we’re going robots are going to take over with all this damn technology. Don’t you just wish sometimes you could go back to the time when you actually had to, god forbid, call someone and TALK to them on the phone instead of just text or email. It’s gotten kind of ridiculous in my opinion. I get kind of side tracked in these, oops.

Well despite all of the wondering, stressing, and overthinking my life is Imagepretty good. I can’t really complain. I’m feeling better than I was before and things are looking up. And this weather!!!! It needs to be summer now and then I’ll be happy as a clam 🙂

Side note: I can’t believe people actually come on here and read about my fascinating life (sarcasm) haha. I mean I like to think I’m pretty cool but thanks for planting the thought deeper in my mind 😉 bahah

Hope you all have a good night, I’m done babbling on for now. It was nice to get on here and write a little bit again. Sweet dreams!

-xo Michelle

 

 

 

A New Light on Life

My blog has been pretty consistent with my life with Crohn’s disease along with the complications and obstacles us Crohnies endure. I haven’t posted much lately but I’ve been doing a lot of thinking. Turning in a different direction, I’ve been thinking about how our struggles can relate to others and also how worse life could really be. Even though I have been sick majority if not my whole life, I couldn’t be more thankful for the live I live and the people in it. I was standing in line at the physical therapist with one person in front of me. He was rambling on about how this is a big year for him and his family, his daughters were turning 13, 18, and 21 and graduations and college and so on. But then he started talking about himself and his biggest accomplishment this year was his five year mark of being cancer free. I stood there and beyond my control a smile came on my face. I got the chills, he was so happy and I was silently so happy for him. It kind of hits close to home.

My mom was diagnosed with thyroid cancer almost four years ago. You usually hear of people her age being diagnosed with breast cancer, ovarian cancer, and awful sounding things like that. This wasn’t something you heard of everyday… Or at least we hadn’t, up until then. She broke the news to my brother, my dad, and me first of course. I was standing in my kitchen just me and her because my brother was away at college at the time. I could see on her face something was wrong. Every horrible thought raced through my mind before she even said a word. Her eyes welded up and I didn’t hear anything other than the word “cancer”. I got the biggest pit in my stomach. You never think anything like this is going to happen to you, or even worse the ones you love the most.

The reaction from most people was “Well, if you have to have cancer that’s the best kind of cancer to have”. The disgusting thing about this statement is these people weren’t making a joke, they were serious. I don’t care what kind of cancer you have, NONE of it is good, and unbeknownst to them we soon later met someone who was fighting the same thing and is now losing her battle. It’s scary thing to think about. Thankfully having my experiences of treatment in Boston, my mom decided to go that route as well. This could have been the factor that has now allowed her to be cancer free. She had her thyroid along with a whole ton of lymph nodes out. She barely has a scar. Her surgeon was great. As the next few years go by and she undergoes radioactive treatment we looked to the good of it all. We dealt with it and moved on. Although she is “cancer free”, cancer is never really “gone”. It’s still an everyday worry.

Having experienced this gave me a new light on life. Although her battle with thyroid cancer was pretty quick, it’s still an everyday struggle. She now lives with the complications of living without a thyroid. Gaining weight, hot flashes, calcium problems, and many other side affects. Constantly switching medications and visiting many different doctors she now has to deal medically with herself along with two sick kids (my brother has Crohn’s too). I don’t know how she does it. She is an amazing mom and can juggle a million things at once. She hasn’t had an easy run her life and you’d never know it. Many people now a days, I hate to say it, but are so selfish, she is the most selfless person I know and I couldn’t be more proud to have her as my mom. I hope I can be even a little bit like her when I’m older.

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These past four years has made me realize how much life we have to live.. Or how much we potentially don’t have to live. Overall, I have little worries and try to live each day to the fullest. Being sick, this is tough. But you might not be alive to see tomorrow. Money is money and it’s here to spend. I’m not saying I’m not careful or irresponsible but my point is our bodies are unpredictable and do crazy things and living life is why we’re here. We’re here to do amazing things, love each other, argue, be support systems, and just be crazy! I challenge you, go out this week and do something you’ve never done before. I don’t care if you’re sick, if you have cancer, if you’re completely healthy, or if you have a broken leg. You can do it, and it’ll be worth it. Go embarrass yourself, and have a good time doing it. Be carefree for once. These are the kind of things that have kept me sane. Laughing and being crazy from time to time which my mom has been trying to teach me all my life.. it does wonders because as sick as you are, having a healthy spirit and mind is the most important thing. Laughter is the best medicine.

Listening to that man in the physical therapist office ramble on and talk about his kids and how excited he was, is really amazing. It’s exactly what I’m talking about here. I could tell he just had that zest for life. He was a cancer survivor and there’s nothing more rewarding than that. I might be sick, and there might not be a cure so yeah it’ll be a life long battle. But I’m here to live the crap out of this life, pun intended 😉 And you should too!

 

-xoMichelle

 

p.s. I was nominated for a blogging award my a fellow IBD blogger and my next post tomorrow will tell you more about that and show my appreciation! Thank you thank you thank you!!! ❤

 

I’m Famous! Or Atleast My Dr Says So..

Being the topic of my doctor’s, as well as all the other top GI doctors in Boston’s, “complicated patients conference” I’d like to call it I didn’t know how I should feel about that.. (But it does pretty much mean I’m famous 😀 ). I guess in some ways I was relieved for him to actually admit I have a complicated case after failing more meds and treatments than I could count on my fingers and toes. I met a doctor fromImage Ireland working at The Brigham and she was really good. I know my doctor struggles and he tells me sometimes he doesn’t even know what to do or why something is happening but it was nice to feel as if someone else was concerned and genuinely interested. As you all know I’ve been feeling good. Well, that is about to end. In order to be entered into the clinical study I have to have a Harvey Bradshaw score of at least 5. Which in short means, I have to be pretty damn sick. They measure this by your symptoms and the severity of them. My HB score right now is zero meaning I am in clinical remission. My doctor decided to rapidly wean my prednisone dose. This is bittersweet for me. This in fact means, I will get my skinny face back… But, I will also get back my overly skinny body, exhaustion, fatigue, potty emergencies, nausea, and just plain ole feel like crap. I am not looking forward to this to say the least. But, like I say it could always be worse. And if trying a new treatment that may potentially make me feel good means feeling like crap for a little while well, then I’m down. Gotta give a little to get a little.

I’m going to be all over the map on this post because my heads been all over the map lately. Tonight’s got me thinkin’. Thinking back to my relationship post. Trying to have that mindset now. But there’s something different everyday for me. Yesterday it was my back, today I was really feeling my kidney stones.. How the hell is someone going to deal with me haha. Really though, god bless them! Hopefully I’ll find it someday. But, it’s hard enough to even get a date around here with a decent guy. It’s so frustrating! Never mind I have to try to explain myself and why I don’t go to school and just work at a froyo shop and a local vodka company. Sick girl probs at their finest. It’s hard to separate other reasoning why someone doesn’t want to be with you or why something doesn’t work out from just the fact I’m sick. I’ve had people who couldn’t deal with it and now it’s the first thing that I jump to when something doesn’t work out. I don’t know why but that’s what I do. Right now my face is about twice the size it normally is (hence “moonface”) and meeting new guys is terrifying because I think everyone can notice, even though they really probably don’t. I just relate everything back to it which I shouldn’t do but everything else just sounds like an invalid excuse to me. Dumb.

But besides that whole issue, I’m pretty nervous to get sick again.. It’s hard to keep up with work and now that I have my own place I have no choice I need the money. At least I’ll be some what prepared. But on the other side of it, it’s hard when you know you’re going to get sick. The anticipation is there and it’s just digging at me. I feel like all of this is completely pointless because in as little as a few days I could be barely able to function. I definitely am going to take advantage of every day I feel good right now though. I think it’s hard for other people to understand when I say “I’m going to get sick”. One of the blogs I follow put it perfectly when she said we don’t get sick like you get sick, with a cold or with the flu for a week, it’s not like that. We get sick where day to day activities are almost impossible to complete for extended periods of time. We do a damn good job at hiding it too because Crohn’s is also known as an invisible disease. This phrase, “invisible disease” is evil. The kind of evil you never want to run into. You can be the most beautiful person on the outside, and physically suffering on the inside. We are often mistaken as hypochondriacs or “fakers”. Noone truly understands the disease because they can’t see how sick we are by just looking at us. We can throw a pretty outfit andImage a nice smile on and no one would ever know. So much is still out there we don’t know about this disease. There’s still so much more to solve. 

I’ve stocked up my fridge with powerade and homemade soup in order to get ready for when it’s time for my HB score to reach a 5. Yes, I’m excited for the trial but in the same breath I can say I’m not ready to get sick. I’m not ready to give up this energy and this good feeling I’ve been feeling. It’s just another day in the life of a Crohnie. I might be getting more and more “famous” in the IBD medical world due to my complicated case, but I’m still your average tweny-one year old girl just trying to carve her path in life and find someone along the way to hold her hand while she does it.

 

-xo Michelle

 

Keep on Smiling, Crohnie’s!

ImageSo another update on how my treatment is going.. I’m feeling really good tonight. In all aspects: physically, emotionally, and mentally. I actually feel great. My mom took my IV out tonight and I’m FREEEE! 😀

The prednisone did its job like it always does. Now I just have to keep up with my dose on oral meds. Kind of sucks though because I just started getting moon face; if you’ve ever taken prednisone you’ll know EXACTLY what I’m talking about. That’s the only frustrating part, but hey I’d take feeling better right now over anything! And something interesting, I have a herniated disk in my back which I’ve mentioned before if you’re a returning reader, but being on such a high dose of prednisone via IV has actually helped my pain. I’m planning on getting my butt back in the gym tomorrow! I’m so excited! Bought some hot new pink leggings just for the occasion 🙂

 

Feeling better has really brought some zest back into my life. Even though it’s only been a coupleImage days of feeling good you really learn to appreciate these times the most. With this unpredictable disease we have constant sudden ups and down. Never take one of those days of feeling good for granted. I know I don’t. I get up in the morning, look in the mirror, and can see myself glow at the start of a good day. I’m not a depressed person and never have been. Yeah we go through bouts of depressing times but you need to learn to cope with it. Life gives you lemons, squeeze those suckers and make some lemonade. Climb to the top of that mountain and overcome it. It will get better.

 

I talked to the doctor that is running the fecal transplant trial in Boston the other day and he told me I am most likely going to be entered into the study because it looks like I will qualify! I have high hopes that this could help me in the long run. It will be a rough month of several trips and testing done in Boston (2 hours away from my home) but hopefully it’ll be worth it. You get to the point you will do Imageanything to have a couple weeks or months of feeling good.

My head right now is in a really good place. I haven’t looked at myself in a while and thought “I look good” because I felt so sick. I’m finally getting my confidence up again and putting that big smile back on my face! Despite the IV I had stuck in my arm, I went out Saturday night with my girlfriends and had a blast dancing for a lot of the night. I haven’t had that much energy in a while. Yes, it didn’t last long but to even be able to go out and do that is amazing for me!

Took my trazadone tonight so I’m dozing off, just wanted to update you and tell all you Crohnies out there keep on smiling! 🙂

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The Inevitable topic of… Poop.

This post is geared towards the people who have to deal with us and our crappy situations. We have to talk about the inevitable. It cannot be avoided, we all poop! Even girls, girls poop too! I know, it’s crazy! And meet someone with Crohn’s disease or UC and poop is just a normal conversation. It is actual the center of our disease. Basically, an easy way to define this disease everyone can better understand is that our bodies are allergic to our poo. Just like there are nut allergies and animal allergies, we have a sort of poo allergy. Yes, it is a gross thing, I never said it wasn’t but it’s life. Our body’s immune system attacks our intestines leaving us with severe pain, exhaustion, bloody stool, diarrhea, and inflammation. These are just a few of the symptoms we have to treat because as of right now there is no cure.

As you can tell this can be an embarrassing disease. Especially dealing with it in public, in a relationship, at college, and around friends. We know our way around every bathroom within a ten mile radius and when we need to go, get out of our way!

Thankfully my support system with this is huge. I have a group of girlfriends who have gone the extra length in helping me get through accidents I’ve had and know the extent of when I have to go. My mom is also the queen of getting me through this. A huge way she has gotten me through this is humor. It’s okay to laugh about it. You actually need to laugh about it.

A funny story I’ll share is the first time I ever had an enema. If you don’t know, an enema is when a water solution is flushed through your intestines via your bum hole. It is used for a few different reasons, one being to clean you out and relieve constipation. Well, I had to have one done and as it was my first time I did need some help. I am laying on my left side as my mom holds up the bag with a long tube connected to it. “Mom! Come on! Don’t look!” as I stick this thing up my butt. This is a kind of absurd concept to most people. But, she is standing in the bathtub hiding behind the shower curtain holding the bag up so gravity pulls the solution down. As she stands there she starts histerically laughing which causes me to hysterically laugh. You are supposed to hold this in you for as long as you can, which is near to impossible as you’re uncontrollably laughing. Needless to say I didn’t hold it for as long as I should’ve but in the end the experience made me realize it is important to laugh. To this day we laugh about this time and my next enema wasn’t nearly as bad!

My rock.

It’s okay to be embarrassed as well; however, you should never feel you can’t share with your loved ones. It is our body and we need to talk about it; take control of your life. A lot of people cannot deal with being in a relationship with someone who has this disease, I have experienced this first hand. There is nothing wrong with that but we have enough of a hard time dealing with it ourselves we don’t need those people to bring us down. Break the ice with a new friend, old friend, girlfriend, or boyfriend about your disease however you are most comfortable with whether that be a joke or serious conversation. They need to know it isn’t who we are but it is a huge part of us. Be confident!

My First Thought

Lately, my life has been a big rollercoaster of dreams and thoughts but no action. I lay here in bed and ponder questions like when am I going to be able to go back to school, am I ever going to get a good job, or will I ever be able to support myself? Things healthy people my age are doing at this time in their life I’m not able to do. Everyday I see my friends planning for when they graduate and what types of jobs their going to work towards. I then hide away in my mind wondering if that will ever be me.

Living with Crohn’s disease is not an easy task to say the least. I am constantly wondering how others my age are dealing with this illness and thought it might help one person, or many, to read my story and relate (as well as have an outlet to complain and/or celebrate my days of feeling great!). One of the major annoyances we face at all ages is my favorite, the famous “well you look great”. Yes, I admit when someone tells me I look good it boosts my confidence a little bit, but after a while don’t you just get sick of it? I want to say “take a look at my insides and then tell me what you think!”

But, a little bit about me.. My name is Michelle and I am 21 years old. I have had Crohn’s Disease since 2005 (well I was diagnosed then). I am a very active person as I was a dancer and gymnast most of my life. This disease doesn’t define my life, but that is only because I don’t let it. I have tried almost every treatment out there and am still finding myself in the hospital one to two times a year and on prednisone more than I want to be. I travel about 2 hours to see some of the best doctors in the country in Boston, MA and seek every opportunity in new treatment as I can. I have a very difficult case to treat and as you can imagine it gets frustrating. My support system is unbelievable though, which I am so lucky for. Most comes from my family, especially my mom.

At any age this disease is pretty shitty and embarrassing (pun intended), but you have to laugh about it. Admit it, we’ve all had our accidents and potty emergencies and we know our way around every bathroom in town. That’s just how it is. At my age, the college years, when you’re supposedly “figuring out who you are” this disease is especially hard. Relationships, partying, making friends, getting jobs, an education. This illness affects every part of your life whether you like it or not. It’s just about how you deal with it and who you surround yourself with. You could hide and let it consume your life with embarrassment and shame OR you could tell it how it is, make the best of it, and laugh your way through the hard, embarrassing times. It is ultimately up to you.