An Immune System, what’s that?

My body is no long familiar with what an immune system is, and quite frankly I’m not sure I am either hah! They say laughing is contagious and I’ll tell you, I wish lack of immune system made me more vulnerable to that instead of making the common cold seem like a never ending soap opera! That’s one thing I wouldn’t mind catching! Being treated with anti TNF inhibitors, immunomodulators, biologics, etc.. all of the fancy-shmancy medications we owe our life to come with a price to pay. Side effects are inevitable at some point in time living with a chronic illness. One of the most common is making us more susceptible to infections whether that be viral, bacterial, cancers (yep), and other immune sexinessdeficiencies or diseases. And there’s no way around this side effect because it really just means the medication is doing its job. They all act in different ways but for the most part they all are compromising or “working on” our immune system since Crohn’s disease is basically an abnormal immune reaction to the GI tract which causes inflammation and complications.

My body never “caught” things more often than the normal person before. The doctors kind of just put thoughts in my head to be extra careful. Being exposed to certain infectious diseases can be extremely dangerous to a person with a weakened immune system, and by that I mean life threatening. We, as patients, have a responsibility to be aware of this but it does make it easier when medical professionals and the ones we are closest to are aware to (and this is where vaccines come into place as well, another post on that controversy to come lol). I once kind of freaked out at the carelessness of Baystate hospital for putting me right next to someone with TB when I had a serious flare, a very bad kidney infection, and was on multiple medications that significantly lowered my immune system (yeah that happened). But other than that I’ve never really experienced anything significant.

That is until… I wasn’t responding to the usual dose of Humira which is an injection every other week so my doctor increased my dose to once a week. TADA! Crohn’s buh-bye! I feel great! Until I start experiencing allergies (or you may call them sensitivities) that I have never had before. Muscle soreness and much longer recovery time after the gym. Then… Here comes “cold and flu” season so my body decides it’s just going to catch everything under the sun! It has been about a month and a half and I have had little to no relief. Not only is this wearing on the body but on the mind as well. Doctor visits, urgent care visits, physical therapy, xrays, MRI’s, blood tests, sinus infection, laryngitis, tendinitis, I could go on and on of what the past two months have been.. This sounds pretty miserable right? Yep it is. But it’s the price I’m willing to pay. I no longer really have to worry about a bathroom nearby every time I eat (YEAH IT’S A MIRACLE), and stomach pain is few and far between. (We all have our bad days that catch us by surprise.. like the week of my period might as well just stay in bed for a week straight between cramps and the mini flare I get every single time.. but we’re not focusing on that here.. so, moving on..).

I decided to take things into my own hands and try different methods of controlling my symptoms so I can regain quality of life. I will be writing another strength.jpgpost to expand on this but for right now I’m just trying to raise awareness to the fact even though a person with a chronic illness may be in remission, it still affects their day to day life. It is all about balance and what a patient will endure or physically can endure to get relief from symptoms of their disease. I might consider my Crohn’s Disease to be in remission although my doctor hasn’t clinically declared this, my stomach symptoms are almost obsolete, but my quality of life just isn’t there yet. I’m working right now to change this because I truly believe I can (especially the mindset of it). I’ve been about ten years with no little to smileeeeno remission so sometimes you just man up and take one problem over the other. Just keep in mind, we might not complain to the world about these issues we face (only to the ones we love the most 😉 ) because it really is nothing compared to the pain and frustration of having a flare up of disease. As I say: throw a smile on despite the struggle of getting out of bed, life could be a lot worse, we have a lot to be thankful for, and its just another day in the life of a Crohnie!

 

-xoMichelle

Just another day in the life.

I’ve had so many drafts typed up over the past few months but just haven’t brought myself to post, I’ve been trying to get away with anything to do with IBD, which sometimes is just necessary to keep sanity. These last few weeks have been some of the worst. I never expected this to happen a few weeks before school starts. I was really trying to avoid it all but you know you have to call your doctor when you have to get ready for work, meaning blow dry your hair and do your makeup, while sitting on the toilet -__- It’s about that time again, the time where my body decides to go all out sick-mode. What I wanna know is why and when this medication stopped working. I was feeling good before! Like really good! I’ve managed to some-what keep myself busy despite the fact potty emergencies have been REAL. This time around though the pain is almost unbearable and pretty constant. I do a pretty good job at hiding it though, probably why most of the people around me don’t really understand what’s happening unless they’ve had serious GI issues. Even when I’m in a lot of pain I still get out, hang with my friends, and put a smile on. It’s honestly the only thing that keeps me sane. I also still go to the gym, which I’ve gotten a lot of crap for, but I have to do what I have to do to keep my mind in a good place. Even if that means laying on the mat and stretching for a half hour, or lifting 5 lb dumbbells, it’s what I need to do. I could easily lay in bed all day and feel bad for myself but I choose not to. Today’s mindset hasn’t been the best, I feel pretty defeated since I just had to schedule an “emergency” colonoscopy for tomorrow. But it is all about your mind set. I’m lucky (well not lucky) but one of my friends has had digestive problems and I can tell she empathizes with me, it’s nice. A breathe of fresh air when most people get aggravated at me bagging plans or not making any in the first place.

What sucks about this all is I start nursing school full-time in a few weeks and for those of you who have read my previous posts, I am on my last resort medication. I have nothing new left to try. My doctor in Boston has consulted with doctors all over the country about my case. It’s actually a pretty scary thought because we’re all (my doctor, my family, and me) left with the question “what now?”. But I try not to think about it too much. I have trust in my doctor that he will work as hard as he can to figure my stubborn case out. Of course I have started on a heavy dose of steroids (60 mg of prednisone). I have waved goodbye to sleep, and can’t wait to welcome on the new pounds… NOT. I don’t think I’ve ever felt this frustrated before. I finally have my path somewhat figured out for the next couple years (granted anything can happen) but I haven’t even been able to go for what I want to do because this damn disease loves to come and punch me in the gut (literally) right before something important is about the happen. But what’re ya gunna do, you deal with the hand you were given and make the best of it. There’s far worse things that could be happening in life. I’ve always said being a patient like this, going through all this, is the reason I want to become a nurse. Every little obstacle and emotion involved in it will make me a better nurse. It has actually made me a better person.

I’m glad I got to rant a little bit, it’s nice to be back on here since I spend a lot of my time and a lot of effort hiding symptoms, complaints, and what not. I’m not quite sure who enjoys reading my complaining and babbling but that’s alright haha. So since I’m writing now I’ll update everyone who follows my blog with how the next few days go. Hope everyone enjoys the last few weeks of summer! 🙂

-xoMichelle 

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 🙂