The 4th and my ACTH test

Yesterday I found myself sitting in the University of Maryland digestive health centers infusion room, occupying the same chair I sat in every time I received Remicade. However, this time I was undergoing an ACTH stimulation test. Earlier in the week I received a phone call from my GI doctor saying they wanted to "touch base with me". Now, because of the fact my next appointment isn't until August and I have been feeling fantastic, I knew something had to be wrong. After calling back, I learned that the results of my last blood work showed a deficiency in cortisol. Therefore I needed to come in soon and have the ACTH test done to assess the functionality of my adrenal glands.

I will try to explain this as easily as possible, and note that I myself am new to this, and I am not a doctor, so I could have things mixed up. Basically your adrenal glands are responsible for releasing cortisol. Cortisol is a steroid hormone and if you don't have enough of it you can feel like crap. The extent to which cortisol can affect ones well being is massive. It can affect your sleep habits, blood pressure, immune response, metabolism, mood, and the list goes on. Bottom line is, you don't want to have a problem with your cortisol levels or your adrenal glands.

After talking with the nurse practitioner who administered my test, I came to understand that there is indeed a connection between my past use of Prednisone (the steroid of Crohns patients) and this deficiency. In short, while I tapered off steroids after my last year-long stint, my body never adjusted to this change. It had gotten so used to the amount I was taking in medicine every day that it slowed down its own production and never compensated once I came off steroids.

While my possible adrenal issues are not to be taken lightly, I know that it is a treatable ailment. I also know that I don't feel like shit so it hasn't been too much of an emotional set back for me. It is just frightening to think about all of the long-term health problems that result from steroid use, which is such a form of relief that Crohn's patients so often turn to because they just want their life back, myself included. But it also makes me feel a little bit better about how long I resisted steroids after my last flare up even when doctors were pressuring me to take them. There are just so many complications that arise from steroid use that do not get discussed openly when doctors place you on them.

For now I have to wait for the results of the test and if there is some kind of functionality issue I will have to see an endocrinologist. I am really curious about this Crohn's and adrenal connection because I couldn't find too much about it online, although I have been assured that it is a fairly common issue for people who have been treated with high doses of Prednisone.

Anyway, just a small update. Today I will be making S'mores bars, a flag composed of jello, red white and blue cheesecake, and orzo pasta salad. This is all in preparation for my sisters July 3rd Independence Day party and I can not wait.

Hope everyone's 4th is filled with good food, drinks, family, and friends.

Numbers Don't Lie

Since 2008, I have spent 123 days either in the hospital or traveling to the hospital for an appointment. During these appointments I have had 26 exams. This includes colonoscopies, xrays, catscans, etc. And perhaps even more interesting is that I have been prescribed 22 different types of medications in an effort to treat my disease. This only counts the past two years.

I got these numbers recently through a partnership my insurance company has with webmd. They are trying to influence members to keep track of their health through this online database. I guess it's a way of taking personal responsibility of your health, partially through your own contributions to the database but also the information given to your insurance company by your doctors.

I don't necessarily think it is a good idea because all it does it provide basic information. For instance, it will tell me the date I was treated, which doctor, and which test was done. But there's no option to actually review the details of the test results. Perhaps this is something they are working on or perhaps the intent is to spark a patients interest in maintaining their own personal health record by providing the database as an organizational tool. Either way, it was kind of shocking to read.

To think that I spent 123 days dealing with the bull that comes along with hospital visits and invested time and money to get to these appointments is staggering. To think I endured 26 diagnostic tests to a manage a disease that couldn't be managed is frustrating. To think that not one of those 22 medicines could provide long-term relief is unbelievable.

In the future I look forward to being medicine-free and disease-free.

Free. I like the sound of it.

Hurry Up and Wait

Often throughout my time being sick, I have always been counting down the days until an important event. Sometimes it's been a doctors appointment where I knew big decisions were going to be made. My sophomore year of college it was a countdown until the end of the semester when I would have my colostomy reversed. These past couple of years it's been wishing for time to go faster so I could reach the time period alloted for whatever new therapy to begin "working". During these waiting periods, I've never been able to enjoy anything else that was happening in the present.

I figure in the past nine years with Crohns, I have wanted time to go faster more often than not. The big events of your life when you're dealing with illness are not like most where there's certainty in the reward waiting for you at the end. With chronic illness the waiting games are torture and you never know if the result will be worth the agony and exhaustion it takes just to endure the exams, medicines, and appointments. And even when there is good news waiting on the other side, it just means that you've bought some extra time. Nothing is ever certain.

Part of my decision-making lately has been thinking about all of the time in the past nine years I have lost because of Crohns. I wouldn't be able to live with myself, if, in ten years, I looked back on my twenties as a decade that should have been the time of my life. The time I've lost recently has been especially rapid. Everyone around me is moving and I'm just stuck in a rut where I'm standing still and I have nothing to show for it but the physical and mental effects of fighting a battle that can't be won. Part of me feels the defeat of this assault, but another feels victorious that the duration of this more recent struggle has allowed me to arrive at a place of acceptance.

I can see the light!

Feeling better after Remicade

During my first stint on Remicade, from 2005 to 2008, I was never one of those people that needed their next infusion. Of course I diligently kept up with my bi-monthly appointments but it was never a big deal when that time came around. Even when I started the drug, I did not see a drastic improvement like many people do. Instead, my turn-around was a gradual process that occurred over three months.

I started the drug in August after a summer where I pretty much lived in the hospital. And if I wasn't in the hospital, I was at a doctors appointment, trying to convince my doctor that I didn't need to be hospitalized. And then days after my twenty-first birthday, I started Remicade during one of my hospitalizations. After everything I had heard about people experiencing drastic improvements on it, I was optimistic. Every hour I spent out of the bathroom, without pain, or a craving for McDonalds, had me thinking, "Is this it? Is this Remicade working?" I wanted it to help me so much that I attributed every little positive moment with the magic that Remicade had to be working.

But I have learned with this illness that you can not look at your symptoms on a day by day or hour by hour basis to judge how you are feeling. Sure, the way you are able to perform your day to day activities is certainly going to determine if you are happy with your treatment, but you have to step back and take account of how you have been feeling over a long period of time. I have to remind myself of this all the time.

For instance, I feel like whenever I have doctors appointments, I happen to feel well at the time. And even though my symptoms are terribly upsetting to me sometimes, I often forget just how much they interfere with my life, because I'm so damn happy those few times when they don't. This can be a problem.

But back to my point about Remicade. I remember throwing myself into my spring semester in 2006 not having a clue about what was going to happen. At that point it had been four months since I started Remicade and I was getting better. But it is one thing to feel well when you are sitting at home and always in your comfort zone, or near it. It is another to return to school, live with strangers, and not have your support system around. And once I got my semester started, something about it felt different. I enjoyed going to class, living with five other girls, and being on campus. My health only improved and Remicade gave me three years of the most amazing time of my life.

Looking back on that situation, I can see that getting my first infusion of Remicade was a turning point in my life.

Now I am in a situation I'm confused with. When I began Remicade again this year, it was like night and day. The differences were felt immediately. This was certainly a different reaction than the reaction I experienced back in '05. I guess I am just trying to make the point that everything is unpredictable. No one can predict this disease, the drugs to treat it, or how our bodies react.

I was feeling like garbage this past month and then bam! I got Remicade on Wednesday and I've felt great since. Now I don't know why the last infusion didn't seem to help me or why this one did. But I know that taken on a whole, there has been so much inconsistency with my symptoms, even since the start of Remicade again. Even though I am so grateful for the fact that I do have good days now,I think if I were transplanted back to my college life of '06, I wouldn't be able to thrive as I did then. Remicade just isn't doing the same things for me this time.

I guess I'm just trying to get myself ready for this colonoscopy on Thursday. There will be so much to think about and a lot of decisions to be made. Taken with my symptoms and blood work over the past several months, the extent of inflammation my doc sees in my colon will likely determine if we continue on this course or come up with a new plan. Either way, it's a scary thought to abandon Remicade. I know it sounds crazy but I feel like I have an emotional attachment to it just because of the things I was able to accomplish when I was in remission.

Sympathy fasting on Wednesday??? ANYONE?????

Oh well. This guy certainly won't be fasting with Aunt Ellen. But I think his mom would agree she could use a break!

The State of Remicade

Today was another trip to Maryland for my infusion. It seems like the four weeks just flies by and before I know it, it's time to go back down again. This time I scheduled the appointment around noon because I really don't enjoy waking up so early to get down there. We left around 9 am and got there a little before 12. No matter how early I leave it never seems like its early enough because I'm always just barely making it there. I guess because I'm always going at different times I haven't quite gotten a sense of the perfect times to leave. And then coming back is always a question mark. Today we left Baltimore around 4 and barely ran into any traffic. We were home in Philly by 6. Strange.

Anyways, I haven't been feeling very well since all those obstruction episodes a couple weeks back. I haven't been able to do much, honestly. I feel like I get short of breath from walking up a flight of stairs and lightheaded with the slightest movement of my head too fast in any direction. That on top of my normal Crohn's symptoms has been a rough combination. But I am trying not to push myself too much because I have to take the GRE's on November 15 and I need to keep myself in good shape.

I briefly discussed some of my concerns with my doc via e-mail. Between my symptoms and the news I got after my MRI, it's pretty safe to say this colonoscopy is no longer being done to see if my colon is healthy enough to be reconnected. At this point my doctor wants it done to compare it to the one I had before I started Remicade again. Basically, if he does not see much improvement then we need to consider another therapy option.

Now you might be wondering, like a lot of people, why I would abandon Remicade if it made me feel better? And while it did improve my life drastically, I don't think it's enough anymore. My symptoms are still way too inconsistent for me to feel comfortable living a normal life. I think I was so happy about how I was feeling because it was some improvement, and nothing else therapy-wise had done anything to make me feel better. Also, I am now about two weeks steroid-free. And I definitely think there was something about the combination of a small dose of steroid and Remicade that clicked well. But I can't be on steroids forever, and certainly Remicade and 6-MP (Chemo drug which has been shown to extend the effectiveness of Remicade) should be able to make me feel better.

Now back to the scope and MRI. The scope next Thursday will give my surgeon a better idea about the extent of my fistulas. I read the report myself today and I have three of them, two of which are producing small pockets of infection. From my understanding it all depends on the location and size of the fistulas to see if they can be removed. Either way I am pretty sure I am going to need surgery to place the setons in, which I talked about last post.

Everything going on right now is very overwhelming. I feel like I came to a lot of conclusions about my life and I want to be able to carry out all these plans I've been thinking about the past couple of months. I am excited at the idea of possibly being in school next year, but if I do get accepted, I need to be healthy. I don't want it to be like some of my college years where I sometimes could barely even walk from class to class. I want to enjoy every minute of it this time.

I keep telling myself that if the scope next week shows things are still really bad, then I am ready mentally to have surgery, because I have exhausted a lot of my therapy options. I know surgery is the only thing that will give me consistency again. Lately when I go out with my sister somewhere or go for a walk, I think to myself....if having an ileostomy was the only thing I had to worry about each time I went out, I would be 100 times happier, because the problems associated with an ostomy are A LOT more manageable and infrequent than Crohn's problems. But it's a lot easier said than done...

Guess I'll be thinking about this a lot more come next week when I know for sure what's going on.

Candy Corn and Other Nonsense

Yesterday=longest day EVER

Anyone who lives on the east coast or has access to a TV knows how much rain we got Thursday night into Friday morning. Needless to say, between being paranoid I was going to oversleep and miss my Friday appointments and the loudness of the rain pelting at the windows, I didn't sleep, AT ALL, which made for an interesting day.

I left Philly around 5:30 AM and it was still pretty messy out. 95 was really hard to drive on actually and you could barely even see the lines on the highway. And forget about trying to pass a truck because the rain coming off these things made it impossible to see. But wonderfully it was towards the end of the storm and by the time I got to Baltimore I could see the sun...well, almost.

The infusion, MRI, and doctors appointment went smoothly. It just made for a VERY long day. My brother and I had to drive to Lancaster from Baltimore to pick a new (old) car my dad got from his work and then drive back to Philly. All-in-all it was an extremely long day but I slept like a rock once I got home.

Now of course nothing can ever be perfect when it comes to Crohn's. The week before my infusion I was doing FABULOUSLY. I mean, extremely well. For a week straight I had zero symptoms. That's probably the longest stretch of time in two years that I haven't been symptomatic. So obviously it got me very optimistic about this scope in November going well. But then, of course, I had to go and eat an apple.

And it was delicious. But I inhaled it. I had been babysitting all day so I didn't eat to avoid attending to Stevie and I was famished. I was thinking about that apple the whole day I was gone and I couldn't wait to eat it. I know it sounds silly but I just love apples and I haven't gotten to eat too many in the past year.

Well, I must have done a bad job chewing because I started getting symptoms of a blockage. Not to give too much detail but you can imagine that those kind of rubbish things we all eat do not really get broken down by our bodies so it's pretty much coming out of me the way it went in. That's why people with ileostomies and Crohn's in particular have to chew very well. Our intestines are sometimes swollen, thereby making it harder for food to pass. We often have scar tissue that likes to wrap around our bowels so the smoother our food is, the easier it is on our intestines.

It was about three days of varying pain. Sometimes it would be dull and other times it would be very sharp and unbearable. The good sign was that my ostomy was still active and functioning, so I knew my bowel wasn't completely blocked somewhere. I did start getting alarmed when I got a pounding headache and started throwing up, but I still didn't call my doctor. In retrospect, I probably should have, but I am so familiar with these things that I pretty much knew what I had to do. So I stopped eating solids for a day and took in A LOT of fluids. It took a lot longer than usual for whatever was stuck to pass but things definitely got flowing again and the pain went away JUST in time for my appointment yesterday.

So I mentioned this little hiccup to the doctor who administers my infusion. And you know what she did? SHE WROTE ME A PRESCRIPTION FOR PAIN MEDICINE.

WHAT. THE. FUCK.

She wrote the script like it was nothing. She told me she knew I wasn't in pain anymore but she wanted me to have it in case something like that happened again. She said there was no reason for me to be in any amount of pain or discomfort.

Now for those of you who don't know why I freaked out about that. Let me refresh your memory. Basically, for that whole year I was in bed, losing 50 pounds in 2 months, having my hair fall out, throwing up every day, crapping myself, being in the worst pain of my life, etc...well my doctor would not give me pain medicine. He didn't even suggest that I go to a pain management clinic or anything. It was pretty much, "We're going to treat your symptoms and if that doesn't help your pain then we need to try something else to treat your Crohn's". And you know what? That might be an OK philosophy for someone who is suffering from Crohn's and able to live their life with some adjustments, but when someone is drastically ill and spending weeks without even stepping outside their house, it's time to give out some friggen pills.

Ugh. I guess the whole thing just goes back to me having a lot of regrets about wasting as much time as I did with that practice. And I'll always think back and wonder if my disease would have progressed that far had I stayed with the doctor I am with now. It's something I beat myself up over all the time and I know I need to just put it behind me. I did what was easiest and made sense at the time.

When I was waiting for my MRI in the room where all the people actually getting MRI's are waiting in their little gowns, I was talking to this lady from Lansdale. Lansdale is a suburb of Philly. She was telling me how she, too, travels all the way to Baltimore for treatment because she loves her doctor so much and the care she gets there. And that was really comforting to me. Cause sometimes I think people think I'm crazy for traveling down there as much as I do. But really, I would tell anyone, that you can't put a price on a good doctor and I never realized that until recently. Even though I've had tons of bad doctors before I started going to the University of Maryland Medical Center, I just assumed afterwards that because I was going to a doctor who worked at a very reputable hospital that I'd be happy. And not to say anything bad about my doctor from last year but his style and his practice just didn't work out with me. It wasn't like I felt neglected or unmonitored, but they didn't have a holistic approach and I think that's what I like about Maryland.

Ok, so back to my point that I was trying to make before I rambled.

I just like that I feel very cared for right now. And that's how you should feel when you have a chronic illness.

That's all for now. Oh, and how great is candy corn?

Tired

I am tired. But I'm not sick. The past couple of days have been the first days in a while where I have just sat around not doing much. It's probably a good thing for me. I tend to judge how productive I am based on how many things I can cram into one day. Sometimes I over-do it. Lately I've been in a very predictable routine of exercise, studying, and nephew-obsessing. Sometimes, it's nice to just spend a whole day watching TV. I need to find a better balance and I think I am getting there. I am listening to my body and when I feel I can't do something, instead of doing it anyway, I'm resting.

I've all but eliminated going out with my friends. This is more-so because with my recent prognosis I am excited about the future so I am trying to do everything for myself that is going to ensure I get accepted to grad school. For once I am not bogged down with worrying how I am going to get through a day away from home or go out for a friends birthday. Now that those silly things are no longer a huge weight on my mind, I am free to think about the bigger picture beyond Crohn's. And I can just tell you; it's very damn exciting.

With how I am feeling at this moment, I think I will be okay even if this colonoscopy in November shows that I can't be reconnected. As long as I can continue being healthy, even with the ostomy, I am okay with that. Of course, if he is willing to reconnect me, that is another huge decision to make. But I will cross that bridge when I get there.

In other exciting news, I am down to 10 mg of Prednisone and not noticing any symptoms returning. This could be because the 6-MP has finally taken effect or that the Remicade just needed some time to get things really under control. I am going to taper really sssssllllloooowwwwlllyyyy until I get down to 0. I can't believe I've been on them ten months now. And as excited I am to be free of steroids, I don't want to get anxious and taper too fast. Hopefully next time I will have a good report of being steroid-free. It definitely calls for a celebration.

So for now I will probably update again after my next Remicade infusion on the 1st of October (I think). I also get an MRI that day but I doubt it will show anything. Hope everyone is enjoying this weather. I love this time of year. Especially being HEALTHY at this time of year. Makes for great hikes in the park. And great walks with your nephew :)

This weekend

I went down to Maryland on Friday to get my infusion and everything went great. Well, aside from having my brand new iPhone 4 stolen. But that's a whole other story and quite frankly I am sick of talking about it, because I'm sick over the concept of even letting my guard down enough to have something that expensive taken from me. But I guess after the news I had received at my appointment, my mind was understandably elsewhere.

So my appointment was at 9 o'clock but I missed the train at 6:53 which would have put me in Baltimore with an hour to meander around and get my morning coffee, some newspapers for the infusion, etc. So instead I caught the 7:45 and made it just in time to be 20 minutes late. I hate being late. Especially for doctors appointments. But it's probably the one instance in life where people expect lateness. Usually I just call the office when I am running late and they are accommodating because of the distance I travel to get there.

The first appointment was to check-up with my GI there. I don't see him in office every time I go down for an infusion. Mostly it's just the nurse practitioner taking notes about my symptoms, vitals, change in meds, etc. So it was nice to actually talk to my doctor about some sort of plan. I also knew since I had complained about the abscess a few weeks back that he would want to check that out. Ugh. So despite the fact that I am used to being poked and prodded in the most unflattering ways, it is still a production when I have to actually put the gown on and get "examined". I mean, most of the time I am prodded, it is done so under anesthesia or some kind of drugs to make me not care that a metal object is being put up my behind. So yea, I wasn't too happy about him needing to do a thorough exam of the area, but I knew it was necessary.

And I was glad that he did not see any evidence of the abscess remaining. The exam was very comfortable and it did not hurt so I knew everything was healed up. He could also see one small fistula that looked like it was unhealed, so that is something that is going to need to be studied further as the possible cause to the problems I get in that area, such as the abscess.

And then my doctor told me his plan. I am to keep taking the anti-biotic prescribed after my abscess scare and start tapering off of steroids again, this time at a slower pace as to not upset my body.

AND THEN, he said the magical word I thought I would never hear again, RECONNECTION! AH! Quite frankly I was surprised he would even talk about that possibility yet. Basically he told me he would like me to get the MRI done next time I go down for an infusion and then in two months I need to have another colonoscopy. Hopefully he will be able to dialate my bum to see how extensive this fistula is. But also, if my colon looks like the only remaining inflammation is simply diversion colitis and not crohn's colitis, then we can set up a meeting with a surgeon to talk about reconnecting me!!!

Talk about happy. Do you know the scene in Rudy when he reads his acceptance letter on the bench and he's got this quiet excitement. Like he wants to scream at the top of his lungs but he just composes himself and then gets up and runs. That's how I felt. I was trying so hard not to be cheesing it. And really, I do also understand that I still have some pretty shitty days which indicates my colon isn't as great as I would like it to be right now. So I am not totally getting excited that this is a possibility for the near future. But I'm hopeful. I really didn't think any doctor would even bring this up with me for months because of the way things have been. But I am glad my doc understands how important this is to me. I really do love my doctor!

So that's the plan. As I got my infusion, the nurse called and arranged for all my tests to be set up. I'll be getting my next infusion on October 1st along with my MRI. And then the following month, on November 4, I'll have my colonoscopy, which will hopefully yield some good news. As I was telling someone about this today, they asked me how many colonoscopies I've had and I just laughed. Not to be a medical-test snob, because they are a big deal, but I've just had so many I can't remember. The good news, however, is that by the time you get to whatever number it is that I'm at, you learn the tricks of the trade. You know, what you can get away with eating even the day before the test and how you don't really have to drink ALL that crap to clean your system out. And I'm rambling.

Okay, just had to share those updates. My sister is going to be induced on Tuesday. I will be an Aunt!!!!! I'll post some pictures next time. Did I mention I love my doctor?

Happy Labor Day.

I'm not an Aunt yet

My sister did not have her baby yet and hopefully she doesn't go into labor tomorrow, which is her due date, because I'll be in Maryland for a very short visit to get my infusion and see my doctor.  I'm taking Amtrak down just so I don't have to deal with driving while groggy and hitting the Friday Labor Day traffic on the way home.  I'm leaving at 7 AM and I should be back in Philly by 3:45!  Amtrak is a bit on the pricey side but it only takes an hour to get down there and Penn station isn't very far from the hospital.  

So I've decided to apply to a couple of programs in Public History and one in Historic Preservation.  I really like the program in Historic Preservation but it is a lot harder to get into. Although, with this particular school, they don't require the GRE and instead of the typical one to two page personal statement, they like an eight page essay.  I already started writing it and I'm really happy with what I've been able to write so far.  For once in my life I feel like Crohn's is giving me an edge.  I am certain there will be very few people who have been able to come to a conclusion about wanting a career in this field the way that I have.  What I lack in work experience I certainly make up for in life experience.  Finally, Crohn's is going to help me stand out from other people in a positive way.

The GRE class I am taking is really intense but I can see that it is helping.  I get really frustrated with Math because quite honestly, I suck at it.  And that's why I chose a college major like history.  Supposedly in high school I got good grades in Math so I had all my college math requirements wavered, which is coming back to bite me in the ass because I don't remember anything.  But even though I am not the best in Math, I feel like the course is at least helping me become a better test taker for this particular format.  

Other than that, I had a really fabulous week.  I finally feel like there's some consistency developing with how I feel.  I've been able to string together a lot of good days, but I've also been trying to take better care of myself.  I've been walking a lot and even starting to get some of my endurance back for running.  I find that I'm never out of breath but my leg muscles are still very weak.  You can forget about running uphill.  It just can't happen.  I should probably start doing other exercises to increase my strength.  My problem is in the past I've always just ran and that was it.  Sure, I'd mix in a few lunges and sit ups here and there but I could always just run and run and that was how I stayed fit.  

This weekend is going to be great.  I have a birthday party tomorrow night, the Red Bull Flugtag on Saturday (OMG), a first birthday party on Sunday, and the Phillies Monday night! And between all of this I could become an aunt.  

And now it's time to download a movie on iTunes to watch tomorrow.  Shamefully, I think I might download The Last Song.  That should be mindless enough.

Random updates

So I haven't updated in a while. Here's the breakdown.

Been picking up a lot of odd jobs here and there. Babysitting, dogsitting, elderly-sitting. It's nice to have some cash for myself again and get out there. It really makes me stop and think about how I am treating my body. I have stretches of days where I'm eating wonderfully and having no problems and then randomly I'll have a day or two where I feel crappy. But all-in-all I've been doing great. Hence the fewer updates.

Had a minor scare the same day I posted last time about how great I was doing. Started having symptoms of an abscess. Yes, the same thing I had emergency surgery for last year. Swelling, mild fever, pain while walking, talking, sitting, anything involving the use of my butt muscles (you use them more than you think) Called the doctor. They weren't alarmed and didn't over-react (which makes me think I had surgery last year for nothing-another story) and prescribed me antibiotics and told me not to worry unless things got worse. Well, that night I decided to go to the Phillies game anyway and stand instead of sit, and lo-and-behold, while walking to the stadium my abscess must have burst on its own and started draining involuntarily. This made for an interesting scenario but it relieved the pain and swelling and I've had no problems since. Whew. If only the Phils had won that night.

A lot of other things are going on and I've come to a lot of conclusions about what my next step should be. I am taking a GRE prep course and hope to take the test in the fall. More on that later. Things are looking up.

I'll write more after my next Remicade infusion on the 3rd of September. I'll be seeing my doctor then and maybe have some more knowledge.

And by then I could be Aunt Ellen :)

Oh, and check out my good friend Graces' blog because it's not about Crohn's and it makes me smile.

Told you this was random.

Reflections on a year

Well Saturday was my twenty-sixth birthday. And it was fabulous.

Now on Friday I started getting really bad pains in my stomach and noticed I my output had almost completely stopped. I don't get worried about this until I start throwing up, and luckily it didn't get that far. But I was definitely experiencing some kind of blockage, which I experience every few months. And this time I pretty much knew what the culprit was.

PEANUTS! Now, peanuts and popcorn are some foods that you are told never to eat with Crohn's or diverticulitis. But my philosophy is that everyone's body is different and you should just work with trial and error philosophy. And of course I can't just eat a few peanuts or a few bites of popcorn. I gotta eat handfuls. And I am pretty sure the peanuts were the culprit. Even going into Saturday morning I was still feeling pain in my stomach that changed with how I would bend and move. Luckily by the afternoon after drinking a lot of water, I felt better.

So I went to the Phillies game with my friend Anne and some others, including my brother. I really had one of the best birthdays in a long time and was able to indulge in some tasty adult beverages. I don't know if it was the beer or having not eaten much all day but I made it through the game without any pain or problems. Woohoo!

I stole this pic from Anne:

This Friday also happens to be mine and Stevie's one year anniversary. I really can't believe it has been a year since my surgery and how much has changed. I remember how friggen sick I was that morning and I was probably down to 90 lbs. Let's just say I've probably put back on 30 pounds this past year and I'm comfortable with that. Of course I have other issues with my body that come along with losing/gaining so much weight in short amounts of time, but it beats being sick. As long as I feel strong, I am okay.

And I do feel strong, for the most part. My feelings about everything change along with the inconsistencies in my illness, unfortunately. Aside from the little blockage I experienced the other day, I've been eating and getting around fabulously. I can even eat fruits and vegetables. It's amazing. I had salad and watermelon today, salad and cantelope yesterday, and I will probably eat more salad tomorrow! It just feels good to have variety back in my life and I think it definitely has an impact on your mood when you aren't loaded with carbs and meat every day.

So that's what is going on right now. Just trying to stay positive and do things to get myself mentally back in the game.

Tomorrow there is another Phillies game on the agenda, and I couldn't be happier.

It's been a while...

Well I had my infusion yesterday in Maryland and all went well. I swear after I got my benadryl pre-meds, I closed my eyes for five minutes and it was done. Really, I don't know how it went so fast and how I slept through the entire thing. So much for being productive and reading during my infusion. I don't know why I always bring magazines and books when I know as soon as the drugs kick in I'm a sleepy mess.

Towards the end of my infusion there was a father and daughter who were each coming to get Remicade as well. It was very sad to me, as the younger girl was definitely still in her teens and seemed very ill. And I guess just sad to think that both of them make the trek to the hospital together every eight weeks to sit next to each other hooked up to an IV for 4 hours. But I guess if you have to go through something like that, might as well be with your family.

Anyway, I noticed how attentive and accommodating our infusion nurse was to the girl who was sick. She was very nauseous and in pain and they gave her meds to help with it while she was infused. And I couldn't help but get mad thinking at how sick I was and how I had to go through some of the worst pain in my life for a whole year without pain medicine. And I know how GI practices are with prescribing meds but I think my situation last year was pretty damn dire and I wonder if it would have been easier had I been with the doctor I am with now while I was going through it.

On a positive note, I am feeling better at 20 MG of prednisone. Really well actually. It is a relief similar to right after I got the first Remicade infusion again. This relief is something I haven't gotten with steroids alone. There must be something about the combination of steroids and Remicade that works. Hopefully now that I am at my two month mark of starting 6-MP, that will begin to kick in...

Not much else is going on. My birthday is Saturday and I will be celebrating at the Phillies game with my best friend and her fiance. And really, I'm quite happy to keep things low key. I hate to even make a big deal out of the day, but I've come to understand that you never know what is going to happen from year to year and you might as well celebrate things when you can.

Okay, that was a very boring update. Hopefully exciting things will be happening soon.

Long Day...

I've never been so tired in my entire life merely for sitting around in a hospital for seven hours.

Yes, it took seven hours for my small bowel follow through today.

I decided to have the exam done in Philly rather than squeezing it into an infusion-day down in Maryland. Also, with my awesome, disease-free small bowel, I knew the test would take a long time. Last time I had it done it took about the same amount of time.

So the point of the small bowel follow through is to drink a lot of barium, which highlights your bowels as it travels down into your small and large intestines. While you are drinking the stuff at random intervals, the radiologists take pictures of your insides at 30, 60 and 90 minutes. But really, it all depends on the individual and how fast their digestive system works. The barium can show a variety of things like inflammation and for me, they were looking for a fistula. If in fact I did have a fistula connecting my small and large bowels, they would see the barium highlighting this.

It took a while for the barium to get going through my system and it wasn't until 2:30 (I started at 9 am) that I began to notice barium coming out of the ostomy, which meant they would finally get some good pictures of my whole GI tract. They kept me a little longer as well to see if any barium ended up in my colon, from either a fistula or a mechanical problem with my stoma.

The radiologist informed me that preliminarily, he did not see evidence of active Crohn's in my small bowel (which I already knew), nor did he think I had a fistula or any barium in my large bowel. Which kind of sucks.

It really, really, really is frustrating that none of these tests have corroborated what I am feeling. It's almost like I'm just making this shit up because the small bowel follow through and my past cat scan haven't showed evidence of stuff traveling to my colon, yet clearly when I eat anything other than liquids, I suffer immensely from food somehow finding its way there.

I actually hope that when they study the images further they will discover a fistula, just so I can feel like there is an explanation for all of this.

I've been feeling a tad better the past week with adding steroids back into my life and only eating carbs and meat. I really miss eating good food. I miss fruits and vegetables.

Okay, I'm tired and rambling...

Getting sleepy...

I've discovered this past month that happiness too often rests upon one circumstance in life being right. I can't tell you how much clicked for me during that month when I felt amazing. I was interacting with people, exercising, studying, working, and reading. As a consequence, I felt happy even though I knew so much of my future was uncertain. And in the back of my mind while I knew this feeling might not last, I also knew that it was resting completely on the promise of Remicade and whether or not I would continue to respond to it.

That did frighten me a bit. I am a complete Type A personality and the idea of not having control of something angers me more than you can know. Over the years I have become a slave to Crohn's and being at its mercy every time it has come back to rear its ugly head again. But I've also taken comfort in those moments of clarity when I do have control and can refocus my energy on being me again and doing things for myself.

This past week, especially, has been very frustrating. There are plans I was not able to execute and while I should have known better than to think I would be able to carry them out, it was still a let down. When it's time to carry them out and people are relying on you, it just reminds you of what you can't do, and the anger just boils even more. I've been devestated this week at what I haven't been able to do. Once you get a little taste of a little bit of productivity, it's hard to go back.

I guess it's the yo-yoing that kills me. Never knowing what's next. Never having someone around who understands. The worst part, especially, are my relationships with people. No one can ever understand what it is like to have absolutely no control over, not one, but two parts of your body that are producing shit whenever the hell they feel like it. And then people expect you to be able to continue the activities you had planned, or to go out and be "fun Ellen" when they don't understand that the whole time you are out there is not one thing you can think about except Crohn's. It's not like I'm going out to a party or a bar and all I gotta do is suck up some fatigue or a headache. There's a lot more I need to overcome and a lot more that can go wrong, with absolutely no warning. And that's pretty fucking scary.

Just feeling very alone at the moment in this. I know there are people who support me but no one completely gets it. No one. And while they can't be blamed for that, it's hard to be genuine when so much of who you are is something that no one around you understands.

I hate the Pred

I've been a week steroid-free but not feeling any relief from my last infusion. Luckily my doctor is very keen on e-mail and super fast to respond. So I emailed him about this situation, knowing in the back of my mind he briefly mentioned trying Cimzia or tripling my Remicade dosage next month. I was hoping something could be done right away. You know, like a magic wand being waved to make me feel as good as I did for those three weeks after the first infusion. No such luck.

So the plan is to go back to 20 MG of Prednisone, which I've actually come to not mind too much since I don't suffer from moon face, weight gain, and the overall puffiness that comes along with it. But it is still a very dangerous drug, albeit one whose benefits I often take for granted until weeks like this week when I am steroid-free and feeling like SHIT.

Next Tuesday I'll be going to Penn to get my small bowel follow through done. Part of me actually hopes they find something, like a fistula. It would be much better knowing my case isn't simply some fluke that no one can seem to figure out. Although, I will be very mad at myself for not sucking it up and getting this test done months ago.

And I still need to get the MRI and a bone scan done. But I just wanna get the SBFT done first because it is the one I dread the most, and also the test that will tell me the most about what the hell is going on inside.

Side note; I just saw the most recent US News and World Report hospital rankings. Let me just say, I hate that shit. You can have shitty doctors at good hospitals and good doctors at shitty hospitals. Everyone has their own experience that is affected by so many factors. And I realize they are considering a lot of varying criteria in their judgments, but it's still all bull. It's just like anything in life, you dabble here and there, try a few places out, and eventually you find something that works for you and your circumstances.

Infusion Day

Got my infusion yesterday in Maryland and all went well. It was the first time I received it in the new Digestive Center and I must admit, I love the set-up. They have the infusion suites in the same area as the doctors offices so I was able to follow-up with my GI and then get my infusion right away. It's good to be surrounded by nurses and doctors who know you, and vice-versa.

My doctor is still perplexed over my symptoms, and is convinced that I may have an enteroenteric fistula. After doing research on it and listening to my doctor, it does seem to be the most logical explanation for my symptoms and the fact that they virtually disappeared for three weeks after my last Remicade infusion (Remicade is known for being a great treatment for fistulizing Crohn's). Essentially, this means that there is an unnatural connection between my small and large bowels due to the damage caused by inflammation, whereby I'm eating food and it is bypassing a large portion of my digestive system, thus not exiting through my ostomy and rather still traveling through my colon, and also not being digested, at all.

So he really needs me to do a small bowel follow through test before my infusion next month. I'm not happy about this because my doctor in Philly tried to get me to do this and I just could not stomach the stuff you have to drink beforehand. And although he ruled out a fistula via catscan, my doctor doesn't think it is necessarily the best test to make a conclusion one way or the other. So I really need to get this done.

That's it for now. I am still feeling like crap. Today has actually been really bad. But hopefully I will feel okay tomorrow for my sisters baby shower. Now, time to go bake...

4th of July

Holidays are memorable events where we can recall exactly what we were doing at that particular time a year, two years, or even ten years ago. Fourth of July has always been my favorite holiday. Probably because it involves family, friends, and food.

So I can't help but remember exactly how I spent this day last year. In my bed, a very sick person, texting my sister all night as she updated me on the drunken behavior of friends and family at her barbeque. And I've spent all year looking forward to today, and seeing those people whose lives have all changed tremendously since then; marriages, kids, new jobs, engagements, etc.

And then I can't help but think of the meaning of today and how incredible it seems that this is the one holiday where everyone puts aside everything they believe and just celebrates this country.

So sitting here after my incident free seven-mile hike this morning, sipping alternately between coffee and vanilla Ensure, I wish you a very Happy Independence Day, whatever that phrase happens to mean to you.

Let your troubles roll by...

Okay, so I don't mean to be all sappy and over-thinking things but there's this Carbon Leaf song called Let Your Troubles Roll By and there's a line that goes, "You've come far and though you're far from the end, you don't mind where you are, cause you know where you've been." And I guess that's how I feel right about now. Things haven't been perfect lately but I am okay with it. At times I am tested and frustrated, but I'm hopeful. And for what I've endured lately, that's saying a lot.

Last week I started feeling some symptoms returning and I knew it was the Remicade wearing off. Typically when you start Remicade for the very first time, you receive what are called "loading doses". This happens two weeks after your initial infusion, then again at four (if I remember correctly) and then you receive it at the normal eight week intervals. Now, since I had already been on it before and I was receiving double the amount, my doctor decided not to give me the loading doses and just see how I felt.

Considering I am at a very low dose of steroids, I feel okay. But not how I was feeling right after I got Remicade several weeks ago. I talked to my doctor and thankfully he agreed to give me another infusion next Friday instead of waiting until the 19th. Part of me is concerned because after receiving a double dose and having it wear off so quickly, I shouldn't be feeling so iffy. But I am not going to worry, yet, because it has been a year and a half since I stopped getting it and I haven't been given the typical loading doses.

In the weeks following my infusion, I started doing a lot of things I love again. When I feel good, it just improves my overall mood and productivity. I've been walking a lot again, reading, studying for the GRE (that's another story for another time). It just feels really good to feel optimistic and have time to do things for myself that don't involve doctors appointments and testing. For so long everything I did was for me, but it was for my Crohn's. Just because you are doing things to improve yourself (such as those doctors appointments) doesn't mean they are doing much for your mind and spirit. Sometimes you have to stop and remind yourself that you need time to heal other things besides your body.

In addition to all of this, I've also been babysitting the cutest little guy ever (well until my nephew is born in September!). It's great because it is my neighbors kid so I merely walk across the street. Once again, this is something that is definitely part of healing me. It feels good to have some income again, no matter how small. It's just an overall feeling of independence and freedom when you have other people who can depend on you and you can confidently carry out responsibilities.

It's not always easy. In fact, most days it's hard. But I feel like I am dealing with it okay and I've come to realize that this is my life. I am not always going to feel great but neither is most of the world. Everyone has their baggage (pardon the pun) and something in their life they wish they could change. Mine just happens to be this and while I wish it were something else, I am going to do my part to make the best of it.

How can you not believe that there is more to this life than suffering and pain when you have access to something as beautiful as a walk on Kelly Drive at sunset? Sometimes I really love this city.

Life and such.

Things have truly been wonderful lately. It is so amazing what can happen when one aspect of your life, such as your health, is a non-issue in your daily life. I no longer wake up and wait around wondering what kind of day I am going to have. I don't have to sip on my coffee for two hours in the morning debating if I should leave the house and do something with my day. I can wake up and confidently proceed with my day without a fraction of the worry I am used to. I feel like once one part of your life improves, everything else falls into place and you start seeing other aspects of life in a new, positive light.

This, of course, means I am getting a little antsy. I have a lot of energy that I've been burning on exercise and just being outside. I find it hard to sit still at all. I haven't actually sat down and watched television in the longest time. There's just too many places I want to be and too many things I want to do. Nothing is mapped out for me and I am free to let my mood carry me wherever it wants to.

My time lately is consumed with being outdoors, going to Phillies games, being with friends and family, eating good food, reading, thinking about the future, and drinking not-so-good beer. With all of this increased activity, I've actually been having problems with my ostomy. Exercise, sweating, and this ridiculous summer heat have me a bit frustrated with how often I now I have to attend to my little buddy Steve. In addition, now that most of my output is out of my ostomy rather than my behind, the increased traffic certainly has an effect on how often it needs to be emptied and changed. I did have an "incident" at the Phillies game last week and I had to leave after 2 innings, but I was with the right person and after a few tears were shed and a few "F Bombs" directed towards Crohn's and my ostomy, I was over it.

Now I won't be going back to Maryland this week for a follow-up like I originally thought. They actually moved my appointment to mid-July on the same day I'll get my next Remicade infusion. That way I don't have to make two separate trips. This works out GREAT because I will be traveling to Maryland next weekend to see one of my dearest friends, Natalie, who will be home from England. Certainly two trips down there in one week would have been rough, so I'm glad they moved it. Once again, it's the little things this practice in Maryland does for me that make me feel like they genuinely care about my well being and take into consideration that I live 2 hours away.

Anyway, I also need to direct you all to an amazing site one of my Crohn's buddies directed me towards called uncoverostomy.com. She blogs about everything in her life, not just ostomy-related things. But I think it's pretty inspirational that a young female can be so open and comfortable with her body. Check it out if you wish.

Let the good times roll...

I think it's safe to say the Remicade is doing absolutely wonderful things. I just cannot even fathom why or how this drug works so well for me. I guess my body just needed that year and a half off of it because the differences are night and day. It's not even like I have to wonder if its working because things have completely changed, dramatically.

Honestly, I got my infusion on a Friday, and by Saturday I felt better. Insane, right? And then after that I feel like things only kept getting better and better. Right now I am satisfied with where I am at. I feel confident and comfortable carrying through with plans and I've certainly enjoyed my new-found freedom the past two weeks. Maybe a little bit too much. But hey, I deserve it!

I was really, really happy because I got to travel to Maryland on Thursday to see my best friend, Claire, in Frederick, MD. We took in a Frederick Keys game and then went out and had a wild time, as always. But I just cannot describe to you how good the freedom of health feels when I go out now. Sure, I still have to worry about my bag, but those problems are usually fixable and minor. And after visiting Claire I took a detour up north and strolled around the new museum at Gettysburg. Again, something I probably wouldn't have been comfortable doing two weeks ago...especially after the night we had.

Also, I've been eating fruits and vegetables again, which I basically removed from my diet before because they caused so many problems. I try not to go too crazy with them because it's still not perfect when I indulge in rubbish, but it's nice to have some variety back. I don't feel like my choices are simply carbs and meat all the time and that's a really nice thing to experience.

So now the next step you are wondering? I need to get this MRI done that I've been putting off for two weeks. I know it's going to show nothing but I want to have the results in time for my follow up in Maryland on the 23rd. I am hoping and praying that my doctor will be receptive to me inquiring about hooking these pipes back up. I know last time they hooked me back up they needed to do a colonoscopy to make sure things looked tame but perhaps there is something else they can do to make that judgment.

I just want to move on with my life. And even if they won't let me have the surgery sooner, I am still grateful that I am on Remicade and feeling this amazing.

What a difference a year makes, huh?