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

What The F&#*

Excuse my French, but today was that kinda day. The past few days I haven’t been feeling that well at all. Been going to the bathroom a lot and lost all fight in me for a second when I looked down in the toilet (after sprinting out of my microbiology lab) and saw blood… Like wtf. Can we catch a break sometimes?! Like longer than a month in the past ten years! Blood and mucus and literally running to the bathroom with every bite of food I’d eat. I tried to eat a lot of calories tonight even though it wasn’t the healthiest food choices I do not want to put myself in the position of losing a lot of weight. I’m hoping this will resolve itself without any medication but that’s usually not the case. I feel like this happens so often I mention it to friends or anyone and they just completely disregard it, and ignore it. It makes the battle even harder, I’m sure my Crohnie’s know what I’m talking about. Again, I never look for sympathy but it does make a difference, you might even make someone’s day better just a simple “feel better” or something. I know people around me get sick or annoyed when I talk about it a lot or say “I don’t feel good” a lot. But I don’t make this stuff up… I get sick of being sick. And the hardest part of it all is I take such good care of my body. Exercising, eating healthy, rest. And it doesn’t even matter.

It seems like it’s never going to end. Well I guess in reality it isn’t hah. I’ve definitely already accepted that but some days are much, much harder than others. It’s the unpredictable nature of the disease that’s the worst and I believe a hard concept for others to grasp. I mean I didn’t feel that great but I was still able to bust my butt yesterday at the gym and today walking to and from class was difficult. I either had severe lower abdominal pain or panic that I wasn’t close enough to the bathroom.

Actually something interesting happened the other day. In Anatomy Lab we were testing our hematocrit levels and my professor was describing how the buffer after separation (WBC’s and platelets) should be so small, to the naked eye it’s non-existent. Well, I saw mine.. Pretty damn clear too. This actually explains a lot. I could be having a huge flare and my blood work never shows much at all except for elevated WBCs. Woohoo thanks for the heads up A&P! -__-

Well getting words out and writing definitely helps turn my thought process around but I’m still frustrated as hell. Especially when I’d like to go out with my friends this weekend but I know if I push myself and even have one drink that’s a totally and completely horrible idea. Oh well, l guess life never gives us battles that we’re not strong enough to fight.

ibd

-xoMichelle

And so it starts…

Well, down to 10mg of prednisone and the Stelara is officially out of my system. I’ve never in my life has this little medicine in my body. I guess which is good to kind of cleanse my system of it all but it’s also bad news bears. Today I was posted up in bed and on my couch sipping on chicken noodle soup and hot chocolate. Granted it’s freezing out so at least I kept warm (hah). But needless to say I’m feeling like crap and my insides are bleeding and a mess. I mean you wouldn’t know because “I look great!” Especially from the weight I’ve put on from this extended dose of prednisone. I registered at the hospital for the fecal transplant trial today and made my appointments. I’m due to get it on April 10th. I’m extremely nervous the colonoscopy is going to make me sick and not allow for the transplant to work. I’m hoping for the best but expecting the worse. This timeline kind of sucks for being sick though. The St. Patrick’s day parade near me is next Saturday and if I’m feeling this bad now I can’t even imagine how I’ll be feeling then and I do have plans to go to it with my girlfriends.

I haven’t had this lack of interest and motivation in a while. Some may call it depressed but I don’t like that word.. It’s a toxic word. I’m just under the weather not only physically but mentally as well. And I know it’s from not feeling good because the past week has been pretty exciting regarding my future and growing my dad’s business as a family business. I’ll expand more on that at some other point, when my mood is a little more chipper. You just get to the point where you don’t really care and just try to get through the day and onto the next. Actually now that I put it that way it sounds kind of pathetic. But that’s the life of a Crohnie from time to time. You have to expect these types of days. They’re unavoidable.

To make this situation worse I’m stuck here in my apartment pretty damn lonesome. Why, you ask? Okay maybe you didn’t ask but I was going to tell you anyways. The pup is at home with my parents. I left her there because my neighbor downstairs complained she barked too much when I wasn’t home. Even though they have to be lying because I take her everywhere with me or leave her at my parents when I’m gone for an extended period of time. So that’s a crock of bs. But anyways, I decided to leave her at home for a few days. And screw them downstairs I’m lonely so she’s coming back tomorrow. I’m just in a bad mood. I was feeling so good for a while. I definitely took advantage of that which was good. But, now I’m back to square one. Yeah, I have something treatment wise to look forward to but it’s not that promising. At least for the long term.

So, that’s all she wrote. Literally. Don’t have much to say tonight just wanted to get out my frustrations of being sick and update all my followers on how I’m doing… which is not good. Boooo. I’m starving and I can’t eat. Throwing myself a pity party then going to bed. Because we are allowed to do that once in a while. Goodnight my fellow Crohnies.

-xo Michelle

Talk About A Pain In the Ass

Pun completely intended in that title. But, me being a Crohn’s patient you’re probably thinking something different than what I’m really talking about (lol). I mean I guess I should have said a pain right above my butt but you get the jist of it. In previous posts I have talked about a herniated disk in the lowest part of my back. I’ve had a cortisone shot before and it wasn’t the most pleasant experience. Although, it was probably the coolest thing I’ve seen in a while. I mean the whole process of it.

I get called into the office, and of course as always, ma dukes is right by my side 🙂 I walked into what looked like an x-ray room with a big white table in the middle of the room and an x-ray machine with a monitor to the side of it. The nurse was very nice and quite comical when she asked me to lay on the table and then just completely whipped my pants off my butt. Yes, without even asking. Why do I always have such interesting experiences at the doctors, I don’t know. But anyways laying on the table, bare ass out the doctor came in. At first I was kind of confused as to why she whipped my yoga pants down considering I was getting a cortisone shot in my back… lol. But, it was the lowest part of my back and then soon realized they have to do the injection lower than the actual herniated disk. Thankfully, he wasn’t going right into my spine but rather in between the very top part of my butt crack, OUCH! Well, here we go. I’m face down on the table and he brings out the needle. Having being poked and protted so many times I have this weird thing about having to watch the needles go in whether its a shot, blood work, or an IV. I know, I’m weird. But being face down I couldn’t even see the needle which was my first problem. But, I just looked forward and saw my mom’s face and let’s just say that told me it all, which was my second problem. The doctor first gave me an injection of Novocain and boy did that kill. He waited a little while and gave me a second shot of it. Then set up the x-ray machine right next to my back. I felt pressure as I thought he was taking the Novocain needle out… Well, he was walking around the room and I was still feeling pressure. The conversation went like this…

Me: “Uhm, I still feel pressure, why.. is the needle still in me?”

Then, my mom with widened eyes and a shocked nervous smile just looked at me.

Doctor (with his thick Russian accent and as calm as can be): “Yeah, don’t move. It’s still in there.”

Me: “Mom, seriously is it? Can you see it?”

Mom: “Yeahhhh it’s still in there alright!”

Well I look over and there is a picture hanging on the wall in which I can see the reflection of the HUGE needle just sticking out of my back. Something you’d see in a horror film.

Sorry I’ve been blabbering on, the cool part is just about to happen. The doctor screws on the syringe with cortisone in it and starts to push it in. I feel pressure but that’s about it. Then look onto the monitor screen and see the cortisone flowing up through my spine. It was the coolest thing I’ve ever seen. Even cooler than flipping upside down after drinking barium and watching it flow through your digestive track Crohnies (ha!). If you’ve ever had an upper GI you’ll know what I’m talking about.

Well, the cortisone got me to about 40% after doing pretty much no physical activity besides several visits to PT. This wasn’t exactly what I had expected but my doctor did warn me it might not work that well. I then, as you all know, had a Crohn’s flare. And for me what that means is more steroids… A few weeks after my cortisone shot I had consulted with my doctor again to get another one, which would have been my last one I could have within the year. But because of my flare I had an intense course of IV prednisone and to my surprise my doctor told me this should help my back long term even better than another cortisone shot. So, I cancelled my appointment. As my treatment went on with the IV steroids I saw a huge improvement in my back. I was even back to the gym! I know I’ve mentioned this before but I wanted to share the whole story and what perfect time other than when it’s acting up again! (sarcasm) I went to the gym earlier today and apparently worked out too hard because the back pain started up again. It started up so bad I had to take a half of a pain pill. I am thinking about scheduling an appointment for another cortisone shot but that also means time off from work and the gym. We’ll see how I feel the next week or so before I jump at that.

Also, an update on how I’m feeling. I was getting sick of this moon face from the prednisone so I figured I’d be a little bit of a rebel and weaned myself a little further than I was supposed to down on the prednisone. Of course symptoms started coming back and I had to go back up to 20mg. They’ve stopped now that I’ve stuck to the doctors orders though. Lately I have been so exhausted. This feeling is all too familiar to us Crohnies. I haven’t felt it in a while though and maybe was taking too much advantage of it or I don’t know. But I’m going back to sleeping almost 16 hours a day and having a hard time functioning normally through the day. I have to push my way through it and chose my battles wisely. If I want to go to the gym at some point during the day I have to take an extra nap at some point too. Days I work, I haven’t been able to go to the gym. I have an appointment with my GI doctor in Boston tomorrow though so I’ll talk more about it with him but I don’t think there will be a solution unfortunately. Just going to stick to my green tea and extra sleep for now. Speaking of sleep, I have to get up at a decent time tomorrow so I’m going to call it a night while this pain pill is still working and not being a pain in the ass!

Sweet dreams my fellow followers and Crohnies!

xo Michelle.