Oh happy day :)

Today has been a day for the books. I honestly never thought I’d ever see this day happening. I’m so excited to announce to my blogger friends, fellow Crohnies, and anyone who follows my blog that I am officially in clinical remission!!! WHUUUUT! (Side effects from my last blog are starting to get sorted out and somewhat under control btw!) This is amazing. 16 years have gone by with little to no relief. I’ve worked so hard to keep a healthy mind dealing with all of the frustrations that comes along with being chronically ill and honestly sometimes I wasn’t too good at it. But, days like this make it worth those struggles.

I had my routine doctor appointment and was seriously astounded by my colonoscopy notes. I’ve never seen my doctor so happy. I can owe my life to these doctors out in Boston. Especially the one who pushed for me to go there in the first place, Dr. Essers. And the one who continued and still continues to follow my case and do literally everything he can to get me healthy, Dr. Snapper. These guys are the definition of what a doctor should be. Not only have they shared my frustrations with treatment failures but they’ve been by my hospital beds in the midst of my mental breakdowns. Dr. Snapper was by my side through my very difficult transition into adult medicine, which was one of my hardest times mentally dealing with the disease. They spend time with me, discuss my case with other doctors around the country, and give me the absolute best treatment they can offer. Dr. Snapper’s PA, Beth-Anne, is also just as amazing. She answers my emails off hours, she’s always there for me.

These people are truly incredible. They don’t just treat me, they fight for me. After countless of semesters having to withdraw because of hospitalizations I came to one of my biggest defeats yet: getting kicked out of nursing school because of my illness and knocked out immune system. But I wasn’t alone, Beth-Anne was there to fight for me. She called the school, she wrote a letter. What medical professionals take the time to do these kinds of things? I’m SO lucky to have them on my side. Any time I see them I’m not greeted with a handshake and hello but a hug, huge smile, and “it’s so nice to see you Michelle!”. I can’t ever get out of the office without getting a hug from the infusion nurse, Jane, and update her on any new boyfriends I have haha! (it’s always one of her first questions). These people are not only just my medical team but they’re family to me.

Nothing puts life quite into perspective like being chronically ill. Yes, I know there is no cure to Crohn’s Disease, and it could flare on me at any time. But these are the times that I don’t take for granted, how could you? I feel good! Writing this is almost bringing me to tears. I truly have such a good support system and I couldn’t do it without any of you. Friends from home, friends I’ve made from this blog, my family. I couldn’t do it without my PCP doctor Lao (who takes care of most of my side effects and is totally sick of me by now hah!), my local Walmart pharmacy who knows me by name haha. And last but not least my mom whose spent more hours than I can even count on the phone fighting with insurance companies to approve my $16,000 monthly cost of medications and has never let me go to a doctor appointment alone two hours away in Boston. She has slept next to me in hospital beds and hasn’t left my side. Also, never fails to laugh with me and make light of being chronically sick… AKA she is the person who keeps me sane through it all.

A lot is wrong with the world we live in… But don’t lose hope in humanity. There’s still good people out there. When it comes down to it life isn’t about politics, money, things, or even beliefs. To me, life is about the experiences I go through, the love I’m surrounded with, the bad days that make me appreciate the good ones, and that’s it. None of us are guaranteed tomorrow. For these reasons never forget to show gratitude and thank those people in your life. Because I know, without them I’m not quite sure if I’d even be alive to see this day. The day I’ve been waiting for for over 16 years, and I couldn’t be happier to share it with all of you!

-xoMichelle

 

Pushing Myself to the Brink

So today was my first infusion of Entyvio. This may sound like a foreign medication to most, and well that’s because it is. It has only been FDA approved since May and then came out in June. I knew this day was going to come that I’d start on my last option (for now), but I just wasn’t sure when. Starting a new medication for me is not exactly a new thing. I have been on almost everything in the book as you all may know from my previous posts. This medicine is a lot like Tysabri (which is a bit more popular, used for CD, UC, and MS) except it doesn’t seem to have the side affects that Tysabri hentyvioas, especially the PML virus which is scary as hell, look it up. When my doctor told me that it was relatively low risk and an infusion once every six weeks I was in! I’m always excited to start on a new medication because it kind of gives me a new light on things, “maybe this will work” goes through my head every time. But this was a little bit different.

I am having so much more pain than normal. I’ve been on prednisone for a week now and usually I am eating the whole household and feeling like a million bucks. Not this time, something is different… I was keeling over with pain this past Sunday and had to resort to pain medication, which I hate to admit. I hate the thought of having to take pain medication, I can usually silently manage my pain and most of the time the people around me wouldn’t even know. Not lately, it’s been pretty unmanageable pain. And the worst part about it is I’m having flank pain too as they call it… Aka possible kidney stones. Wonderful.

I can literally feel my insides swelling. I’m not talking bloating I’m talking tissue swelling. It sounds gross but it’s pretty damn uncomfortable. I eat and I swell. It’s been off and on but also been making me a little nervous that something else is going on. Hopefully not but we’ll give it a little while for this prednisone to work some more and then figure it out.

This all makes me nervous because I am finally ready to grind down and go back to school full force this fall. I have my classes set-up and start next Tuesday towards applying to the nursing program this coming spring. This weekend is also my 22nd birthday and I was hoping to get out and have some fun! I probably will, becIMG_8188ause that’s what I do.. I push myself even when I don’t feel good. Sometimes probably a little too hard but oh well. Like I say “it’s my life, let me live it”. It’s actually KILLING me right now to be sitting in bed exhausted and in pain because I bought some new Nike sneakers and gym clothes today on my way home from my appointment and all I want do is try them out! Lately going to the gym has been the only thing mentally keeping me going. It’s my happy place to feel good about myself and blow off some steam. Even if that only means speed walking on the treadmill and lifting 5 lb. weights (when I’m having an off day physically). Actually I might do that later tonight. Hopefully I’ll be feeling a little bit better after a nap.

It’s frustrating having to be cooped up. I mean I don’t have to be but my body just reaches it’s limit sometimes and I have to take a step back. I’m not sure if lack of sleep because of prednisone or the new medication that did it to me today but I can barely function right now and these hot flashes (prednisone side affect) are god awful. Today I wanted to make it a fun day in Boston with my mom after my appointment but prednisonemy body was telling me otherwise. We headed to the Wrentham Outlets after I was done with the infusion and it lasted about an hour. I was so fatigued, nauseated, and swollen we had to leave. Not to mention my extremely crabby attitude and mood swings (also due to prednisone) didn’t exactly make for a fun time.

Now, this is all just a waiting game. Pushing through each day while I wait for my body to hopefully react in a positive way to Entyvio. I have another dose in two weeks, then four weeks, and from then on every six weeks. My doctor told me it could be up to three months to see how much it is potentially going to work. I’ve decided though, unless I am in the hospital I am not going to let it keep me from school this time. I will not withdraw this semester, actually even if I am in the hospital, I will do whatever I can to keep at it. I need to, for my own mental well-being.

Having an invisible disease is wearing on the mind. Very wearing. People assume because you look good and push yourself that you’re fine. I don’t blame them because how would they know unless they’ve experienced it? Sometimes though I just want to have them walk one day in one of our [Crohnie’s] shoes. It would probably change their life, actually not probably, it would change their life.

-xoMichelle

 

 

Being Healthy With Unhealthy Insides

  fit

I’ve been doing a fair bit of research on this new concept health gurus have put out regarding “clean eating”, gluten free diets, and those different lifestyles. Although I have always been an athlete and active person I haven’t paid a lot of attention to my diet until I took a exercise science and nutrition course. I then realized, it is a very important part of being healthy and fit. Although I wasn’t able to finish the nutrition class I learned a lot and became very interested in health and fitness, I even thought about majoring in nutrition.

Having Crohn’s disease doctors and nutritionists always said I had to stay away from certain things, follow a gluten free diet, and so on. I never thought my diet actually affected me and my insides that dramatically. That was kind of ignorant for me to think because I have a digestive disease lol. So this past year I’ve read a lot and tried some different things that I’ll share with you all. I realized I can be healthy, but I have to tweak my diet so my stomach doesn’t flare up. Now, this of course is different for everyone because unlike most diseases Crohn’s varies SO much from person to person.

First, I tried “eating clean”. This meant, everything I ate was fresh and no processed food or extra sugars. I ate only fresh fruit, fresh veggies, natural peanut butter, and things like that. Nuts, seeds, whole grains, and homemade everything. NO extra added sugar what so ever, the only sugar I ate was the naturally occurring sugars in food. Well, this was a recipe for disaster (no pun intended). All of the fresh food made my stomach burst into tears. The pain, it was unbearable. Although I didn’t show other signs of a flare this definitely irritated me to no end. Now even though it pains me to think (not literally), the processed food for some reason sets better with me.

A funny story that brings me to actually (I get side tracked pretty easily). When I was younger the only thing I could eat in a big flare up was McDonalds chicken nuggets. Nothing else. Gross, I know. My doctor questioned it but as with Crohn’s I would rapidly lose a large amount of weight and anything to keep the weight on he would say “go for it”. I’m not sure if anyone else has experienced something like this before, but it is even odd to me. I can’t say anymore that McDonald’s does me good, but my symptoms have also changed substantially as I’ve gotten older (another mystery of Crohn’s disease). Now, during flare-ups because I have so much pain and bleeding I rely on Powerade and packaged soup.

But anyways, I stopped “eating clean” and now I just eat healthy, or my kind of healthy.. I don’t obsess over my diet but I make healthier choices. When making healthier choices and feeling the results, grabbing for that cookie isn’t as tempting. But, if I want smoothiethat cookie, or a bowl of ice cream bring it on!

Another rage now a days is cutting out carbs. I would never and I could never cut out carbs completely. They say a healthy way of getting carbs is by eating whole grains, nuts, seeds, and all that stuff that is absolutely TERRIBLE for us Crohnies. Like I said, I tried this… and I paid for it with days of pain getting up to an 8 or 9 at times. So now I just stick to getting carbs and sugars through fresh fruit (mostly without the skin due to it being harder to digest) and tortillas and things like that. But, if I want a big fat bagel, I will have one. I think that is the most important thing in eating healthy. You can’t obsess over it and if you want something every now and again, have it! Also, an easier way of eating my greens instead of a salad, or even some cooked veggies are hard to digest, I put spinach or kale in smoothies. This sounds bad but its actually delicious!

Another tip for Crohnies: when you’re having a bad day stomach wise a good option is fasting. Not completely but usually I’ll pack my fridge with fresh or frozen fruit and do a day or two of JUST smoothies or if you have a juicer that works too! On these days I make sure I drink plenty of water and 3-4 cups of green tea (which is a great detoxifier too!) A liquid only diet is something doctors would do way back when (and some doctors still recommend it) to give your insides a break. On these days that I do this I usually don’t go to the gym. I sometimes will actually get in the routine of this once or twice a week even when I’m feeling good. It gives my body an extra boost and motivates me when I get off track and have been eating badly.

I have a secret too. Food is huge with keeping you “regular” if you know what I mean. And I’m talking everyone, not just people with digestive issues. My dad has sworn by the cereal Total. I didn’t believe him until about two weeks ago when I tried it. When I’m not completely flaring, I am mostly constipated (one extreme to the other lol). I had a HUGE issue with this. I was taking laxatives daily, and tried just about anything. Well, I stopped being stubborn and listened to my dad and WOW, worked like a charm! One bowl a day is all I needed and if I don’t have that one bowl a day, I look 5 months pregnant with all of the gas and poo stuck up there, no exaggeration. It’s not just the fiber either. I’ve tried taking fiber, eating more fiber. It’s the type of fiber and combination of things in it. It is also awesome for getting all of your vitamins! No need to take a multivitamin (which are overrated if you have a balanced diet and aren’t deficient in anything).

Another part of being healthy is getting regular exercise. I’ve shared converworkoutsations with people who would love to go and workout but their joints are just too bad. I can sympathize greatly with this but if you have this problem go back and read my post on my joint pain and what I take for it, it works wonders! I try to get to the gym ATLEAST 2 or 3 times a week. It boosts my mood, especially if I haven’t been feeling good and it also keeps my physique even if I only have the energy to walk on the treadmill for a half hour. Since my back injury I’m pretty much back full force but I have noticed exercising my core takes a toll on my stomach. It sounded dumb to me at first but if my stomach muscles are sore from a lot of ab workouts I tend to have intestinal pain and tenderness a couple days after (not just my abdominal muscles, I can feel the difference). I don’t know if any of you have but I thought it was a little weird seeing as this hasn’t happened to me in the past.

I take pride in my body and even though I like my carbs and sweets (sometimes, I don’t have a huge sweet tooth) I think it’s important to realize what you’re putting in your body, especially with a digestive disease. Food fuels your body and most of the time if you eat like crap you’ll feel like crap. Most of us Crohnies can’t change our lifestyle like people with normal digestive tracts but we can tweak elements of our diet. By just changing small little things you will notice a huge difference in your overall health and even in your disease. I try to still cut down on my intake of unnatural sugars because I know our bodies aren’t meant to have those kinds of sugars. An example, I cut out a lot of sugary drinks and juices and now I mostly only drink fresh tea (hot or iced) and water with lemon or other fruit. If I want to sweeten things I add honey, fruit, or stevia. I feel so much better and refreshed. Also, when I don’t drink those sugary drinks my stomach doesn’t act up as much when I eat.

Putting it positively, having Crohn’s disease is a journey and you have to make the best of it. Eating is a huge way of controlling symptoms, shaping your body, and improving your well-being. Eating healthier and exercising normally has made me feel more alive and energetic even on days I struggle through. But, another important thing for your health that a lot of people are deprived of is sleep and it’s time to get those important seven to eight hours of sleep for me! Getting the right amount of sleep (7 to 10 hours) is vital. It goes hand-in-hand with a good diet and daily exercise. Stay healthy my friends! 😉

 yay

-xo Michelle

The Inevitable topic of… Poop.

This post is geared towards the people who have to deal with us and our crappy situations. We have to talk about the inevitable. It cannot be avoided, we all poop! Even girls, girls poop too! I know, it’s crazy! And meet someone with Crohn’s disease or UC and poop is just a normal conversation. It is actual the center of our disease. Basically, an easy way to define this disease everyone can better understand is that our bodies are allergic to our poo. Just like there are nut allergies and animal allergies, we have a sort of poo allergy. Yes, it is a gross thing, I never said it wasn’t but it’s life. Our body’s immune system attacks our intestines leaving us with severe pain, exhaustion, bloody stool, diarrhea, and inflammation. These are just a few of the symptoms we have to treat because as of right now there is no cure.

As you can tell this can be an embarrassing disease. Especially dealing with it in public, in a relationship, at college, and around friends. We know our way around every bathroom within a ten mile radius and when we need to go, get out of our way!

Thankfully my support system with this is huge. I have a group of girlfriends who have gone the extra length in helping me get through accidents I’ve had and know the extent of when I have to go. My mom is also the queen of getting me through this. A huge way she has gotten me through this is humor. It’s okay to laugh about it. You actually need to laugh about it.

A funny story I’ll share is the first time I ever had an enema. If you don’t know, an enema is when a water solution is flushed through your intestines via your bum hole. It is used for a few different reasons, one being to clean you out and relieve constipation. Well, I had to have one done and as it was my first time I did need some help. I am laying on my left side as my mom holds up the bag with a long tube connected to it. “Mom! Come on! Don’t look!” as I stick this thing up my butt. This is a kind of absurd concept to most people. But, she is standing in the bathtub hiding behind the shower curtain holding the bag up so gravity pulls the solution down. As she stands there she starts histerically laughing which causes me to hysterically laugh. You are supposed to hold this in you for as long as you can, which is near to impossible as you’re uncontrollably laughing. Needless to say I didn’t hold it for as long as I should’ve but in the end the experience made me realize it is important to laugh. To this day we laugh about this time and my next enema wasn’t nearly as bad!

My rock.

It’s okay to be embarrassed as well; however, you should never feel you can’t share with your loved ones. It is our body and we need to talk about it; take control of your life. A lot of people cannot deal with being in a relationship with someone who has this disease, I have experienced this first hand. There is nothing wrong with that but we have enough of a hard time dealing with it ourselves we don’t need those people to bring us down. Break the ice with a new friend, old friend, girlfriend, or boyfriend about your disease however you are most comfortable with whether that be a joke or serious conversation. They need to know it isn’t who we are but it is a huge part of us. Be confident!