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 

oooomffff, living the life.

bowels working ecard

Well I was trying to do my English work that was due at midnight but I cannot concentrate and I am having a horrible hot flash.

It all started a few weeks ago, not sure if it’s the season change or stress of school. I don’t think I’m stressed out about school  because I’m doing really good and like it but maybe subconsciously? By “it all started” I mean the exhaustion, countless bathroom trips, and severe stomach pain. I can see it slowly progressing each day. The other night I was up sitting on the toilet for hours and woke up in the morning with such severe stomach pain I had to take a pain pill to get out of bed and force myself to go to my anatomy lab this morning. Thank god I was done at 2:30. I came home and slept for about three hours. It really never ends does it.

Well, got off the phone with my doctor today. He sounded pretty disappointed, just as I was. This was really my last option available right now for treatment and it is clearly not working because I have constant pain. Even when prednisoneecardgoodI feel good, I still have pain. There is a treatment right around the corner but not sure exactly how far that corner is. I don’t know much about it other than it is approved for rheumatoid arthritis and in trials for Crohn’s. We’ll see. Before anything he wants to do a colonoscopy -____- But really before anything we can say good bye to this thin, proportionate face thank you to my 2934838753rd time on prednisone, which started yesterday. Already experiencing hot flashes, moodiness, and insomnia (as you can see it is 2am). And also awaiting my hip and knee replacements at age 30.

It’s constant frustration lately. I haven’t been having much fluctuation in my weight so yes in fact, I look good. Don’t, please, for your own good, ever say the three words “you look good” to a sick Crohnie. WE KNOW! This is in fact an invisible disease meaning unless you are my doctor with a camera up my butt you cannot see this illness. I haven’t been able to eat before 5pm most days without feeling terrible amounts of pain and several potty emergencies in the hour to follow (refer back to my post “Potty Emergencies 101” if you are confused as to what I am talking about…). I can’t even look at food lately. Never ask a Crohnie to finish their meal, or why they are not eating. I don’t care if it is a perfectly cooked filet mignon and a scoop of fluffy garlic mashed potatoes stomach achewith a side of perfectly seasoned mixed vegetables; it is nauseating. Also, don’t force a Crohnie to push themselves harder than they already have. We know what we can and can’t do and we are probably already past our limit of what we should be doing.

I do a lot of nothing lately. Not by choice, but because of this annoyingly life-consuming disease I’ve been blessed with, and the essence behind this whole blog of course. Sometimes I feel like I need to give everyone I meet a detailed medical pamphlet with every little thing drawn out about Crohn’s disease for them to remotely understand. I mean you will never fully understand unless you go through it, as with most situations in life.  But with Crohn’s a stomach ache is not just a stomach ache, “I’m tired” isn’t just “I’m tired”, and in most cases “I don’t feel good” is just a nice way of saying I feel like someone is ripping out my intestines and setting them on fire so try to be at least a little sympathetic or leave me the hell alone.

Crohn’s is indeed a huge pain in the ass, but it isn’t all shitty all the time.. ahah well some of the time. The moral of the story is you don’t know how strong you really are until being strong is the only choice you have. Yeah, it sucks but it could be alllloooot worse. All this talk about different potential cures on Facebook and social media I read all the time is great and all but, I tend to focus on the now, who knows we might not be here tomorrow. So hell, throw a smile on and in between your bouts of excruciating pain and embarrassing potty emergencies find a reason to smile. Laughter is the best medicine. And if you can’t laugh eventually about the weird, awkward situations you will encounter as a Crohnie because they are a lot more frequent than one would think, you’ll go crazy. So I threw in a few pretty funny ecards I found to hopefully get the rest of you Crohnies laughing hopefully at least a little bit!

doing nothing ecard

…said no healthy person ever lol

English can wait till tomorrow. Turning my AC back on because these hot flashes are worse than trying to put makeup on in the dead of summer. Sweet dreams errrrybody.

-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

Making a Difference One Letter at a Time

Thinking about my options this week for my IV prednisone treatment I decided to voice opinion and be an advocate for every adult patient out there. I decided to write this letter to the president of Brigham and Women’s Hospital in Boston, MA where I seek treatment now. It might seem something so simple and silly as the color of the walls but it could make a huge difference. Yes, I am only one individual, but sometimes that’s all it takes is one individual to make a difference.

 

Dear Dr. Nabel,

 

My name is Michelle Strattner and I’m twenty-one years old. I suffer every day from a tough case of Crohn’s Disease and seek treatment at Brigham and Women’s Hospital. I have had several hospital stays in my lifetime in several different hospitals, the Brigham being one of them, and the most recent one. I’m writing this letter to voice my outlook on my first stay at Brigham and Women’s.

I am from Westfield, MA and sought treatment here in Springfield for the first part of my journey with Crohn’s. Having such a hard time finding something that worked for me I was forced to travel two hours away from my home to Boston Children’s hospital. My first time there I was pleasantly surprised by the comfort and joy in the air despite the fact that I was being transferred by ambulance from Baystate Hospital. I was greeted by a nurse who knew my name. As hard as it was and as much as I cried my eyes out my atmosphere was what made my life a little bit easier for those five days.

I was lucky enough to be treated by Dr. Scott Snapper who works at both BCH and The Brigham. But, I found him wanting to transfer me over to the adult world of medicine. Which in the back of my mind I knew was the right thing to do for my health. This was one of the hardest decisions I have made yet with my care.

One morning awaiting Dr. Snapper’s decision, we got the phone call. It was him telling me to pack a bag I’m being admitted to Brigham and Women’s hospital. This would be my first stay there. I was terrified, as any 20 year old girl would be. As soon as I sat down with the lady in the admitting office the tears started flowing and I learned I would be sharing a room with someone else. I realize this is how any normal hospital operates, but why be normal? I don’t understand this concept. I am so susceptible to infection and catching other ‘bugs’ because of my medications this is a danger to my health. This is a danger to everyone’s health. I was lucky enough to get my own room while I was there and I thank your staff for being so sensitive to my transition from Children’s.

But, transitioning to an adult hospital also means sitting in an off white room, staring at nothing. Just because I am an adult now doesn’t mean I don’t like colorful walls and a “cheery” environment. This isn’t just for kids. I am confident in saying that I was dreading my next stay (which may be this week) at Brigham and Women’s hospital. I am preparing myself to beg my doctor tomorrow to admit me to Children’s instead because I know my visit there will be in better spirits and also there will be a place for my mom to stay with me at BCH. Just because people are independent when they are an adult this doesn’t mean they don’t want a loved one staying with them. My mom was forced to sleep in the hospital bed with me because there was nowhere else for her to stay at The Brigham. Thankfully we are both small people. At Children’s they had a built in window bench that didn’t take up much room but it gave her a comfortable place to stay.

Being sick isn’t fun, why wouldn’t you want to give your patients the best experience while in the hospital? It’s easy as throwing a little bit of color and colorful pictures on your wall and making it an easier environment to cater to loved ones as well as patients. You’re hospital gives some of the best care in the country, wouldn’t you like to be able to say it provides a great experience too? I’m not asking for drastic measures, just for you to think about this. Think about how us patients feel, now getting depressed staring at the stock white walls on top of being ill. After reading this, I want you to take an hour out of your life to go into one of your hospital rooms and sit there for a little while and just look around. How does this atmosphere make you feel? Now imagine sitting there for days, weeks, or months. Where would your loved one stay? These concepts are not just for children. We are living beings and need these kinds of things no matter what age. We need that feeling of life most at these points in our lives. An 80 year old man on his last leg of life might live a little bit longer just because of the happiness colorful walls and a positive environment could bring. This might sound silly, but this concept is real. And from experience I am asking you to seriously consider this request.

 

Thank you for your time.

 

Sincerely,

Michelle Strattner