Mentality is Everything

Since I’m done with school for a couple weeks and killed this past academic year with my bare hands ;p I decided I’d write a little bit. I do kind of miss it; not writing as much as I used to. But, I can’t believe I have actually gotten through a WHOLE school year without getting sick or being hospitalized. I keep emphasizing to the people around me that “I’m done, I finished a year!” and they’re probably getting annoyed at this point like “okkkkeyyy we get it, you’re done” lol. But it is a huge deal for me. The past five years of my life (and throughout highschool), I’ve struggled with school. I could never figure out how to not get overwhelmed by a heavy work load and I never thought that I could actually do it. “You’re going to get sick” was in the back of my mind ALL the time. And when I saw all the time, I mean at pretty much every waking second. The struggle was real and this was probably the worst mindset a person could have. After having to withdraw twice from school, several hospitalizations/in home IV treatments per year I was pretty much at a loss when it came to my education. It didn’t help that the schools were not at all understanding especially Westfield State, I kind of wish I took more action with it but at the time I was so sick I didn’t even care. Regardless I decided I needed to do something with my mindset. I first started with encouraging myself (even if I didn’t believe myself I knew eventually I would) and finding a stress outlet, which was the gym. I think that’s truly when things began to change for me. Stress is hands down my #1 trigger to a flare up. It only takes me about two or three weeks of being stressed out to start noticing significant symptoms including- energy loss, bloody bm, canker sores in my mouth, severe joint pain, bloating, etc. Although these past final weeks of school have sent me into a little flare from the stress, I have changed my mindset to control my stress levels and it’s finally paying off. I have a 4.0 gpa to show for it!

The gym and living a healthy lifestyle has no doubt changed my life. Not only do I see myself physically looking healthier and stronger, my mentality is as strong as it’s ever been. It hasn’t been as easy as it sounds though. It’s taken me a few years to figure everything out and I’m still a work in progress (mentally and physically). Some people may call me a bit obsessed with the “fit lifestyle” but I just loFullSizeRender (7)ok at it as dedication. Yes I log my food, and yes I count calories/macros, but how else do you learn? It also allows me to make sure I’m getting the amount of food and nutrients I need to stay healthy. And not to mention keeps my brain occupied with something I really enjoy doing.  Being able to channel my stress, or anyone being able to do that in a healthy manner is one of the keys to happiness. I am now successfully able to block out negativity (which I was terrible at before) and it feels so damn good!

Not only is changing your diet/focusing on a healthy lifestyle and exercising is a good stress reliever but it can be beneficial to IBD itself. I’ve noticed that even when my body might not feel that great, my mind still does which is vital in living a somewhat normal life with Crohn’s. Your mind is everything.. Exercise also tends to calm down my digestive system and allows me to IMG_1613have normal bm! Craziness. I tend to not have the best appetite, so when I exercise it also keeps me hungry and my metabolism in check!  Another benefit of exercise is the benefit it has on your bones. Us Crohnies have most likely been on an obscene amount of steroids, which can long-term lead to breakdown of bones (osteoporosis), so this can be a great preventative method for IBD patients.

Well as this school year comes to a close I am a happier, more accomplished me 🙂 Not only am I closing a chapter but I am opening a new one and starting the nursing program at my school in the Fall. Life is only today, and you can accomplish anything if you really want it. Not to say there aren’t obstacles but take it day by day, moment by moment and you’d be surprised at how much you can achieve!

 

-xoMichelle

Never Stop Living

Well well wellllll. Here we are again. The dreaded sleepless nights due to this awful drug prednisone. Although you feel like a million bucks on it (besides gaining 10 lbs. in a week) these side affects are brutal. My stomach hasn’t quite responded as fast as it usually does with the prednisone but side effects are still raging. I swear I am going to need hip replacements at age 30 and that is no joke. I’m on this stuff three times a year at least. At least this time it isn’t via IV or a hospital visit, although I shouldn’t say that too fast hah.

With everything in this world that is happening it actually makes me look at it in a positive way. My brother put it perfectly, this world is a ticking time bomb. You never know when your time is up. You could get in a car accident, or drop dead tomorrow by an unknown cause. I feel good on prednisone and living in the moment is all I can do. Right now I chose quality over quantity. My options are limited and I start my last available medication (unless something better comes out) either at the end of this week or next week. It was actually quite scary hearing my nurse on the phone tell me it’s my last option for now. I’ll take all the time I can get feeling good because for all I know it might not work, or like I said I could drop dead tomorrow. This might be looking at it in a negative way but I’m really not. smileeeOf course I want and am praying for this treatment to work! But for God’s sake live in the moment! I might have more health issues to deal with when I’m older, I’ve already accepted that, but you can’t live life to the fullest being so concerned with the future. Because after all, you might not be here. It might sound a little harsh but it’s thinking this way that has put that spark of life back in me that’s been dwindling down to nothing but a dull ember. Yes, Crohn’s disease is horrible and I wouldn’t wish it upon the person I hated the most but life could always be worse and why not live it how you want RIGHT NOW. Some people will never have that option. You are lucky to be in the ‘now’ and there’s nothing better than the present, living in it. Put a smile on and count your blessings!

 

WARNING: rant in progress…

I’m sure you’ve all heard about the ALS ice bucket challenge to raise awareness of ALS. It’s been blowing up the media and it really frankly pisses me off the people who are shitting on it and saying people are doing it for attention and all that. I think anyone with any kind of illness, chronic or not, would agree with me. I don’t care what it going viral for the internet or if no money is being raised (by the way donations have gone out of control of ALS woo!) but if something like this was done for Crohn’s I would be absolutely ecstatic, I would probably cry of happiness. Awareness when you have a disease is the one thing you want. You want someone to at least try to understand what you are going through. No one fully understands until they are the one going through it but I have had people say “oh yeah you have a bad case of diarrhea all the time” and its frustrating because this affects every aspect of my life even though “I look good”. This actually is one of the reasons I initially started this blog. To help people better understand what we IBD patients go through. That was just a rant though about the latest rage on social media. So shut your mouth and mind your own business. If you don’t want to support a cause keep it to yourself because the negativity is definitely not needed, grumpy pants people.

Anyways, a friend with stomach issues brought this hilarious article to my attention and I really felt the need to share it with my fellow Crohnies. http://www.healthline.com/health/crohns-disease/would-get. I think every point in this post applies to me, even the jury duty one haha. Nothing worse than interrupting a court room because you urgently have to poo and then trying to explain yourself!

Like I keep saying over and over. Laugh it off, we poop a lot. Although it’s much, much more than that, shit happens (ha) and some people might not understand but you don’t need those people in your life. Find your number 12 if you haven’t already (in the link above), live in the moment, be happy, and don’t let anyone tell you otherwise. SMILE! 🙂

meee

-xoMichelle

HA! The Embarrassment Of It All

Tonight I realized how much knowledge I actually have for Crohn’s disease and gastro issues. I was very surprised with myself. Lately, I’m assuming it’s from writing this blog, I have had a lot of people approach me for advice and just to talk if they are going through these types of issues. It makes me feel so good when I can help someone and lead them in the right direction. I guess though that is why I started this blog. If that’s all I accomplish with only a few people it’s all worth it. If I had someone to relate to and talk to when I was going through my diagnosis, high school, embarrassing situations, and so on I think I would have handled stuff differently. I’m so open about having Crohn’s Disease, which some people are shocked at. When talking to people about their issues I can tell some people are hesitant when I ask their symptoms to tell me they go to the bathroom a lot and its mostly diarrhea… Not exactly the first thing you tell people. But hey, its life and we all poop! And us Crohnies, we poop a lot! lol Usually I’ll share an embarrassing story Imageand crack a joke to make them realize it’s okay to tell me. And once you say it the weight of the potential embarrassment is off of your shoulders and the person opens up a lot more.

I think the most important thing with this disease is to talk about it. I mean of course not the first thing I say to someone is “Hi, I’m Michelle, I have Crohn’s disease and I poop a lot.. Nice to meet you!” Butttt I do think it is important to talk about the psychological part of this whole life journey rather than just the physical part. A lot of this disease is in your head, not literally but we go through a lot and it takes a toll on us mentally and emotionally. As you might see a pattern, I think laughter is the best medicine. And another pattern you might see if you follow my blog is the jokes I make and how I reiterate the fact they help me get through hard days. And it’s not just a positive attitude. A positive attitude will only get you so far with something like this.

A sense of humor can turn those tears of frustration and home sickness while lying in that hospital bed into a small smile, even if just for a second (and yes, I’ve been there). I thank to god that I have someone who sometimes might have a little too much of a sense of humor about it (if that’s even possible! hah). You can turn a horrible experience with blood work or IVs being stuck a thousand times into a funny experience after the fact. Laugh about it. Don’t dwell on the pain. Yeah, sure, it’s not going to make all of that go away and it’ll still hurt at first but it will help you through even more than just a positive attitude. And as you start adding up these experiences through your journey you will have more to laugh about in the future!

Embarrassment is just a feeling our society has created. Everyone has experienced it in our lives. But, it is all in how you handle it. I’ve learnt over the years each embarrassing moment you experience makes you grow as a person. Each time you get stronger and stronger. As your average 21 year old girl I read Cosmo Magazine a lot. I love reading the embarrassing stories but even more I love reading the little blurbs on how the girl or guy could have brushed off the embarrassing moment. Real people telling them how they would have reacted if they were on the other end watching someone embarrass themselves. Every time I get embarrassed I think of this. We don’t tend to be embarrassed or humiliated but all you can do is brush it off, make a joke about it, LAUGH it off! Again, embarrassment is only brought on by you letting what people think and their opinion affect you. Society can be a toxic thing. You will become a happier person not letting these things embarrass you. Not only being a Crohnie, but with life in general. Image

Next time you get embarrassed, think of reading this post. Reevaluate the situation and laugh it off. Don’t let society dig you a hole to crawl into. Stand on the ground and be confident even when you’re at your most vulnerable. Sure it’s easier said than done but practice makes perfect. And if you do this, before you know it you will have even more confidence come your next encounter of embarrassment. No doubt it will always be there but handling it this way will give you a new light on the subject.

After tackling embarrassment and learning to laugh at different experiences whether painful or absurd you are on your way to being an enlightened Crohnie! When talking to people who seek me for advice or just a similar ear to vent too I always make this an important point. Your health and treatment is important but without a stable, solid, sane mind you’re health with be vulnerable to spiral out of control.

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xo’s&laughs -michelle 😀

p.s. I decided to no longer go through with the fecal transplant trial in Boston. Only 20 people are in the trial and I’m not comfortable with it being the first one of it’s kind. I am a pure guinea pig to get the FDA to approve another trial they will be able to do after this one is over and I’m not ready to be sick for three months just because of that. I started back on Stelara and am weaning down on the steroids. I got my second cortisone shot in my back today and you might have as well shot me in the lower back/butt because I am in so much pain AH! My first one wasn’t nearly as bad! But anyways, I will keep you all updated! Thanks for continuing to read! 🙂 OH! and my mom got a new golden retriever puppy! Check out how cute she is! Her name is Bella 🙂

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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!!! ❤

 

Potty Emergencies 101

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“Excuse me sir, if you don’t let me use your bathroom I am going to drop my drawers right here and use your floor.” Don’t tell me that as a Crohnie that thought has never crossed your mind or (if you have the balls) those words have never come out of your mouth in a public place. We struggle with this subject more than people could even imagine. But, thankfully, those important political people are finally taking their heads out of their healthy asses and listening. Which we are very thankful for (lol). If you aren’t familiar with it, a law was passed because of a 14 year old Illinois girl in 2005 who had Crohn’s disease and had gotten turned away from using a public restroom. She had that embarrassing moment we all are much too familiar of, a potty emergency where she didn’t quite make it to the potty. I can seriously sympathize with this, it has happened to me a number of times. This law is known as Ally’s Law. It states that a person with an eligible illness gets immediate access to an establishments restroom even if it isn’t labeled for the public. Although this isn’t passed in all states, they are working on it. It just takes a little research on your state’s website to find out if your state has the law.

In Massachusetts (where I live) Crohn’s and UC patients should have a “bathroom access” or “I can’t wait” identification card. It makes this whole process easier. You can receive one of these pretty easily. I received mine from the CCFA, which I became a member of and they automatically mailed me one. There are a few different foundations that provide them. I do know though, mine Imagefrom the CCFA has my name and identification number so I can prove it’s actually me if someone is rude enough to question it. I have used it multiple times before whether it be to cut people in line (yes, that in fact has had to happened) or just to use an employee bathroom.

Being my strong stubborn self, I did get into a confrontation with a business owner once because of this. And I intend to get him in trouble. Over the years I have became much more knowledgeable about my disease and certain laws and such which has lead me to be very strong-headed about it. I was with my mom on the way to a mall by me when all of a sudden, I got the urge. As a Crohnie when you get that urge, there is NOTHING that is going to make it go away. My mom put her foot down on the pedal and got me as fast as she could to the closest store. It was a convenience store with a big white sign on the front door “NO PUBLIC RESTROOMS”. “Well this is great” I thought to myself, thank god we have this law now. I scurry into the store and asked very politely if I could use the restroom, I have Crohn’s disease and I need to use it now. He said “NO.” A very firm no. My mom followed in after me and she explained to him it is illegal now to turn down a person with a medical condition from using the bathroom. He simply said he didn’t care and no matter what I wasn’t using his bathroom. I was appalled. First of all how someone could be so rude. And panic set in. If anyone wants to talk about “anxiety” which on a side note, I don’t mean to offend people but people need to really reevaluate their “anxiety” and all the meds they take for it, its absurd coming from a person who could easily be on all the anxiety medicine in the world just for the pure fact I have to deal with this disease every day of my life, there are other healthier ways to deal with it. But anyways… my “anxiety” went through the roof and I ran next door to the pizza shop which also had a big white ‘NO PUBLIC RESTROOM” sign, but thankfully I could see the bathrooms so didn’t even ask I just ran! That potty emergency ended up working out, but others haven’t gone that way… If you know what I mean.

All jokes, sarcasm, and hostility aside, this isn’t an easy subject to address. But as Crohn’s disease patients we have no choice but to address it. It can be embarrassing and humiliating but I can promise you, YOU ARE NOT ALONE. We have all experienced it and more times than not if you quickly explain your situation people will be very understanding. The law is slowly and surely becoming in our favor and I highly suggest getting a “I can’t wait” card from the CCFA. Keep these things in mind when you have your next potty emergency and hopefully they can go a little smoother than we’ve experienced in the past! And don’t be afraid to SPEAK UP!! 🙂

-xo Michelle

Who Said One Can’t Make A Difference?

One of my previous posts I wrote a letter to the President of Brigham and Women’s hospital about my stay. I had thought about it for a while and figured the first step in making a change or difference is letting them hear your voice. Basically, in short, I told her how awful it was staying in that small, cramped, white room for four days. Obviously, no hospital stay is roses and rainbows but I’ve had my fair share and this was definitely the worst of them all. My transition into the adult world was to say the least, a hurricane of emotions. Well, my letter must have made some impression because I got a call last week from the Brigham! We have been playing telephone tag for a little while now so I haven’t been able to actually talk to them but I made an impression! It’s crazy to think I did that. They’re actually listening! I never labeled myself as one to be proactive about that kind of thing, but this was different and so I went for it. It was a simple letter. I made a difference!

This just makes me think, imagine if everyone who had experiences like this voiced their opinion and was proactive about it. How much better could we make the world. It sounds corny, but it’s true. People do listen to you, they do pay attention. All it takes is for you to speak up. As cliché as it is but you miss 100% of the chances you don’t take. So go for it! Who cares what they say, if they don’t respond at least you tried. And even if you don’t get a response someone probably read or listened and now you have placed your thoughts in someone else’s mind to think about. All it takes is one person, one letter, one call. And more often than not, you will get a response.

They told me they’d take about a half hour of my time to ask me some questions. I don’t know what kind of questions they’re going to ask me when I talk to them, but I’m preparing myself for anything. I’m absolutely ecstatic they read my letter! I’ve been trying to come up with every possible question they might ask me.  I will write as soon as I here back from them and let you all know how my letter made a difference.

Next time you have a concern or certain experience that makes you think, bad or good, let them hear your voice! You never know whose listening!

Make-A-Difference

Oh, The Side Affects

Side affects, Side affects, side affects. It’s what us Crohnie’s deal with. And man, let me tell you, I am feelin’ them. I am off of my IV steroids and onto the oral. With the IV I was having serious issues sleeping, like I was the energizer bunny 24/7. It was not okay. Trazadone was my miracle drug to sleep. Hey, I love having energy, but who doesn’t want a good nights sleep? It seems though, that side affect is going away slowly now that I’ve been on PO Prednisone.

One side affect PO prednisone gives me that I absolutely DREAD, is the bloat, weight gain, and “moon face”. This is a nightmare to me. I feel crappy enough inside at times, the least this disease could ensure me is looking good on the outside! haha Don’t get me wrong, I don’t think I am fat or ugly; I still have my confidence. And I know that I notice it more than the people around me but it still affects me. When I was on prednisone for nine months I gained a lot of weight, 20 lbs on my small 5’0 frame. You all may not think that is a lot, but when it’s you it is a different story. I will be scarred for life because of an ex-boyfriends friend’s comment. I wanted to believe my moon face wasn’t as noticeable to other people as it was to me… But I was wrong. “You’re dating someone with a double chin?!” Yes, that was exactly what he said. Who would say such a thing?! What a jerk! From that day on I have been so self conscious about this. Especially now being single and if a guy comes along it’s something I constantly think about. I work out twice as hard at the gym, even though I know it is all hormonal/water weight that isn’t going to be shed until I come off of the steroids. I wake up every morning with a swollen face. It’s embarrassing. I know I’m probably making a big deal of this but it is a big deal to me, and I’m sure if it’s happened to you, you can relate.

As a Crohnie, we have to weigh the side affects with how we feel inside. Because after all, we are just treating the symptoms. I’ve been on several different medications that I’ve had to come off of because the side affects were unbearable, others just because they didn’t work. I know I have been asked about what I’ve been on in the past and how it’s worked. So this post I want to share all that information. It’s just part of the journey, we’re all guinea pigs on the path to finding a cure to this unpredictable disease.

In the first years of my battle with Crohn’s disease when I was being treated in Springfield there was a lot of medicines not yet out. I started with all oral medicine including the ones listed below, I promise you there was more but I just can’t possibly remember them all. I also have written next to them the reason or side affect for me coming off of them. I think a lot of these first medications, I was too sick for them to actually work the way they should. I was on several doses of prednisone (oral and IV) in between most of these as well.

1. Asacol– just didn’t give me any relief

2. Imuran- again, just didn’t work

3. Human Growth Hormone Injection- this was used by my endocrinologist because I was very, very tiny. But I will say it had some affect on my stomach because I felt AMAZING on it! And it helped me reach a whopping 5 feet tall! 😀

4. Remicade Infusion- I had some benefits of my stomach feeling better, but the side affects were unbearable. I basically felt like I had the flu for two months after my injection. My doctor told me I probably had some sort of drawn out allergic reaction because I’m allergic to cats and some animals and there are still traces of animal parts in the infusion. Made a little bit of sense, but I had to come off of it after two infusions.

5. Amitriptyline- My doctor put me on this because he thought I might have a component of IBS and this has been known to work really well. Well, I could write a novel about my experience with this medication. It is used primarily to treat depression but I am advising anyone who takes this to be SO SO SO careful with it. Monitor your every move and thought. I am saying this because I went through hell my senior year of high school on this. My stomach felt amazing, but my head not so much. I was deeply depressed, crazy, and suicidal. This was not the normal Michelle. I was a happy, optimistic person. I know how to deal with anxiety and depression and they were never an issue with me. I cried day in and day out on this medicine. Got in screaming fights with my mom (we never fight, we are best friends) but everyone told my mom it was “just how teenagers are”. They were so wrong. In every way possible. I really don’t think I’d be alive if it wasn’t for my mom. She has IBS and so decided to try it as well. Well, she noticed.. She started going crazy too. The same behavior. And to think people actually take this to treat what it was giving me. I was on 10mg and the normal dose for a depressed person is something crazy like 150mg. I know this is a controversial issue and I don’t mean to offend anyone but these types of medications are a lot of the cause for people’s depression and anxiety, they cause it. Moral of the story, be very careful with this stuff. It is poison to your brain.

My doctor then told me he basically had nothing left to try so we got a second opinion in Boston. My first doctor at Boston Children’s Hospital, Dr. Esser’s was great.

5. Humira- worked great Crohn’s wise… but… I was a stubborn teenager in high school and refused to keep giving myself the shot. I get poked and protted all the time I am not afraid of needles or shots but it was absolutely the most painful injection I have ever had in my whole entire life. I did try it again later but for some reason it didn’t work as good. I’m not sure if I had built up a sort of immunity to it but it didn’t show the same results as it did my first course of it.

6. Methatrexate & Cimzia- My doctor used “double therapy” on me and I was on these two drugs at the same time. I felt pretty good on this, but when he did the colonoscopy to make sure the inflammation and symptoms were going away (aka the drug was working) he didn’t like the results.  I still had a substantial amount of active disease, so on to the next one.

7. 6-MP- Well this was an interesting one. My hair started falling out.. ALOT. I went to get my hair highlighted, as I usually do. She used nothing different. Chunks of my hair started falling out.. It was terrifying. I looked up the side affects and that was one of them. I don’t recall if this drug actually worked but I came off of it as soon as possible. And thinking about it I’m guessing it didn’t have much benefit to my disease.

8. Tacrolimus (Tac)- This drug was used as a substitute basically for the prednisone, and I did show benefit from it. One side affect from it though my doctor had never heard of before me was severe bone and nerve pain. So for this I was prescribed Neurontin, which is a nerve pain medication, but I couldn’t take it because it made my head crazy. I dealt with the bone pain (he told me it may have been my bone marrow swelling) for as long as I could and I ended up having to come off of this medication anyways because it was only a short term fix.

When my doctor moved I started seeing a new doctor, Dr. Snapper, who was partly in children medicine and partly in adult. He’s great! He has also tried many medications with me.

9. Thalidomide- This drug was scary. I was still on the Tac while using this as well. I had to basically sign my life away. Not that I was planning on it but if I was to get pregnant it was basically federally mandated I get an abortion. If I was getting blood drawn or anything I had to let the phlebotomist know I was on it to make sure she wasn’t pregnant or breast feeding because it is SO harmful to an unborn child. I felt pretty good, disease wise, on this so my doctor did a colonoscopy and again wasn’t satisfied with the results. I still had a lot of active disease.

9. Tysabri Infusion- This infusion was also scary, there was a risk of developing a rare brain virus that was usually fatal. There was a blood test you got before to rule out that you would develop this rare virus, but the risk was still very real. I was willing to try anything though. Of course, just my luck.. I got every side affect besides the rare brain virus. I had a severe cold and was run down 24/7 on this medication. I could feel my immune system being completely wiped out. It was awful. My stomach did feel a little bit better but I couldn’t function day to day which wasn’t worth it. My colonoscopy also didn’t have the best results as usual.

10. Micophenolate- This just plain old didn’t work.

11. Stelara Injection- This is a new medication to the IBD world, it is usually used for Psoriasis. It is my most recent medication. The side affects I got from it were terrible cystic acne, cold/flu symptoms about a week after the injection, infections (UTIs, yeast infections, sinus infections, ear piercing infections, etc.). I tried as hard as I could to deal with the side affects until it was time for a routine colonoscopy to see if the medication was in fact giving me some improvement. My stomach felt good but to our surprise my insides didn’t reflect that.

Right now I am in a “wash out” period of the Stelara. Basically, this means I have to be off of this medication for 12 weeks before I can do the fecal transplant trial in Boston I have previously written about. All of these medications have, like I said before, been a battle between side affects and controlling my disease. Some side affects more serious than others. Several of these medications can cause serious incurable cancers. We have to have the mind-set of what it is to feel good, we have to look to the future. If a medication works for us we have to weigh how much we want to deal with. Crohn’s disease is still essentially a mystery, slowly revealing new clues. But, in the mean time while these clues and steps are being improved upon our doctors are just doing their best to control our symptoms.

While I sit here and share with you my past experience with medication I am starting to feel better about my moon face. It doesn’t seem so bad after all. If a boy doesn’t like my chubby cheeks and double chin every once in a while then he can go take a hike! HA! Well, one of my favorite shows is on now… The Bachelor. So I am going to go watch me some Juan Pablo and forget about my moon face for a little bit. Hope you all have a great night and just know you are not alone with all of this rif raf of side affects. It is just another one of the pain in the asses we Crohnie’s have to deal with, pun definitely intended.

Much love,

Moon Face Michelle 🙂