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

Independence Finally!!!

Hey strangers! Need to get back on top of writing, I miss it! Talk about a busy week and a lot more to tell you all! I moved into my own place!! I love it so so so much!

I signed my lease last Tuesday and a week later I’m all settled. I worked a lot this past weekend and have barely had time to sit down and relax, which thankfully I have a few days off to do so. The apartment has all refinished hardwood Got my keys!floors and so many windows. Also, not to mention two huge closets in the bedroom for all of my clothes 🙂 The landlord let me paint the walls, which I was ecstatic about, so me and my mom got to work during a big snow storm last week and got almost the whole thing painted! We finished the kitchen and bathroom yesterday and my living room furniture was delivered today. I couldn’t have done any of this without her. She is literally amazing, I don’t know how she does it! Despite living like a caveman with no furniture and no internet/TV for a week it was so worth it. Now I’m all cozy with my pup (Zoey, one of the little white ones) sitting on my couch watching TV. I’m so happy here. It’s safe and the perfect situation.

I finally feel like I’m going somewhere in my life. I know it sounds crazy, but being as sick as I’ve been my whole life there are constant obstacles to overcome and many times I can’t finish things or have had to quit a job due to just being sick. And frankly, it sucks. It sucks a lot. Like I’ve said earlier school has been a serious struggle for me. Something about the stress of it being a huge trigger to my stomach. Having had to withdraw twice because of hospitalizations it got extremely frustrating. Not only just feeling like a disappointment to myself at times, when people around me don’t know my situation and I say “no I don’t go to school” orMy little dining area :)“I took a couple semesters off” they look at me and I know what their thinking, “well you’re going nowhere”. I’m an extremely ambitious person and I want to do a lot in my life, and a lot of people don’t know this because to the outside world it looks like I’m not doing much. I work in a Frozen Yogurt shop as a supervisor and for a local vodka company. This doesn’t exactly sound like I’m making the best living. But, I love my life right now and feeling good is my main priority. I won’t let this disease stop me. And as foolish as it may sound to you, getting my own apartment, taking my finances into my own hands and gaining some more independence is my way of taking lead.

Well, on another note… still on this damn prednisone, down to 20mg though! Face still as my mom calls it- looks like a “lil chubbet”. Thanks mom, at least you’re honest hah! Gotta love her 🙂 But amazing as it is, I am feeling GREAT! I don’t think I’ve ever felt so good in my life and I think that’s why I am so happy. I seriously appreciate life so much when I feel good. It’s kind of weird though because usually if I go any lower than 40mg on prednisone I start getting sick again. That has been the pattern my whole life. I’ve been off of 40mg for almost two weeks now. And I’m still in the washout period of the Stelara which means it is still in my system. I had a talk with my mom about this because it is getting close to the fecal transplant clinical trial. I am actually rethinking it. I’ve been emailing back and forth with my doctor in Boston tonight about it. I think the Stelara is actually working. Woah, yes this is a huge change in plan. I’m very worried that because I am feeling so good with my history of getting thrown into a flare after colonoscopies (which I will have two in a month) I will become sick from that and the fecal transplant won’t work. My doctor pointed out that he thinks the fecal transplant won’t hurt because I can always go back on the Stelara. Which he is right but that raises another issue… Insurance. If I go off of the medication because it doesn’t work it is going to be extremely hard to get them to cover it again. As if it wasn’t hard enough the first time *sigh*. Hours of my mom fighting with them on the phone. I mean, the medication does cost $12,000 for one shot, which is absolutely absurd. This is a huge risk. It’s awful the reasoning behind it but insurance is only getting worse. And thankfully, my mom gets really good insurance coverage from her work. I’m nervous also because I’ve heard the getting the fecal transplant once has been beneficial to colitis patients, but with Crohn’s it usually takes multiple treatments, and this clinical trial is only approved for one treatment. So, my ongoing question is still there of is it worth it. I guess we will only know if I do it or not. I will let you all know what my final decision is!

To close this post onzoie! a positive note, us Crohnies know the struggle. And yes, the struggle is real. Keeping a positive attitude is my main focus of this whole blog. We can tend to get negative and wonder why we’ve been handed this awful disease. Don’t let those thoughts consume your life. This battle was given to you to fight because you’re strong enough to fight it. You’re strong enough to pull through the hard times and show everyone what you’re made of. I’m slowly but surely accomplishing things in my life, and you can too! It might take us a little longer but we can do it. And we will do it.

I’ll be sure to be writing more often!

Kisses!-Michelle

A Step In The Right Direction

Hey you guys! 🙂 Haven’t written in while. I have ALOT to update you all on. My life is taking a turn for the good and frankly I don’t know what I did to deserve such a perfect situation coming my way, I will write about my great news later in this post because I can’t hold it in anymore. Health wise I’ve been feeling phenomenal. I could use a little liposuction on my face, per usual of a semi-long dose of prednisone, but other than that I’m feeling great. Unlike the common complaint of a Crohnie, laxatives have been in my daily med regiment, and I mean twice daily. HELP! I am certainly not complaining, but looking 15 weeks pregnant due to being bound up isn’t the most attractive or comfortable thing. Miralax has been in almost every drink I consume (thank god it is tasteless) and Dulcolax every other night. Apple juice, apple juice, apple juice is all I drink. I feel like I am constantly prepping for a colonoscopy! I guess I am normally a constipated person when I’m not sick. Who woulda known. Here I am again, sitting here talking about poo. This is a normal conversation for me though. I never used to be able to do this, but like I said everyone poops, and if you’re grossed out right now stop reading. POOOP. I said it and I’ll say it over and over again. Now I am just comfortable enough to blurt it out the public via the internet. But the other night I went out for a drink and apps with my friend, lets just say I was on the toilet for hours that night in severe abdominal pain due to constipation. Never eat a lot when you’re bound up… Or you will regret it. I could’ve used a morphine button all night. I thought I was experiencing a blockage, but I wasn’t… Just a little, okay ALOT of hard poo. It was Terrible, with a capital T.

Well aside all that shit-talk, guess what?! I’m taking a huge step in the right direction in my life. I put in an application for an apartment! My own place! And he will rent to me! I find out tomorrow or Tuesday when I move in. Some people might call me crazy, spending the money and all that on a place down the street from my house, but it’s my life, and it’s what I want to do. A lot of people don’t know my story. I’ve never had the opportunity to live on my own, go away to school, or any of that because of my stomach. Having Crohn’s Disease is a constant battle of ups and downs. You never know what is going to happen. You could be perfectly fine one day and undergoing emergency surgery the next. And yes, that happens a lot to a lot of people with this disease. It keeps you out of work, school, and functioning in everyday life. Finding and keeping a sense of independence is hard with this disease. So, this is huge for me. After a few years of work and saving money, I am finally in a financially okay place to afford an apartment of my own. Yes, I might be surviving on spaghetti and Ragu, but that’s life. I want to grow up and have independence. What time is better than the present? None. I’m taking a leap of faith and doing it. Thankfully I have such a supportive mom that she is guiding me in the right direction. I’ve been looking around at different places here and there over the past couple years, but this couldn’t be a better fit for me! I can bring a dog with me, which is HUGE. That was a deal breaker at most places. The apartment complex is really safe and the landlord does an awesome job keeping it up. So, I find out tomorrow or Tuesday when I will be moving in! I’m so excited! I can’t wait to tell you guys more about it! It makes me a little nervous being on my own if I ever get sick, which will happen at some point I’m guessing. But, I am right down the street from my family which is great. And, I will deal with that when the time comes.

Well, still taking the Trazadone to sleep because of the prednisone, and I can feel it kicking in. I know that because I will start thinking and talking nonsense and I can’t really see straight hah. Man, does it work though. I wake up at a decent hour fully rested and ready to go. Gotta let it work though!

Sweet Dreams 🙂

-Michelle

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 🙂