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.

Check this out

I don't know when or how long ago I first stumbled across Laurie Edwards. But I've been reading her blog for quite sometime and I just ordered her book. This article she had published back in '06 resonates for me now and I think even if you don't suffer from illness there is something for you to get out of it, too. Anyway, check it out, if you wish...

http://achronicdose.blogspot.com/2006/04/select-writin.html

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.