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!


I love...

that someone found my blog by googling "can you eat too much candy corn?" Happy Halloween!


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.

Oh nO! theswollencolon.net is now theswollencolon.com...for now

I did a terrible thing!

So I got an email telling me that theswollencolon.com was available so I thought it would be a great idea to purchase it and just keep both of them until I could gradually re-direct everyone to the new address. It sounded perfect. But in reality, they completely delete theswollencolon.net and replace it with .com. Great. So now my LOYAL followers are going to have a rough time locating me.

I'm working on seeing if I can remedy this somehow...


Can I catch a break?

Doesn't seem like it.

First of all, I started feeling like crap again on Wednesday. Definitely not to the extent of last weeks pain and vomiting but something has to be going on inside. The pain isn't as horrible as last week but it is still there and gets worse when I eat. Yesterday I was extremely nauseous, throwing up, and had a huge headache. Luckily by the end of the night I was feeling much better and keeping down some soup and lots of fluids.

Then my doctor called me with the results of my MRI. I have quite a few fistula tracts leading to pockets of fluid in my bum, which explains what happened a few months ago when I was having a lot of pain down there. So it is necessary for me to have an outpatient procedure done to place setons (spelling?) in the fistula tracts to ensure that fluid doesn't build up again. From my understanding of it, the seton is like a thread that they place through this tract, thereby ensuring that the tract can drain the pockets of fluid.

So I have a consultation with the surgeon the morning of my colonoscopy to schedule a time to do this thing. I'm not getting too discouraged, however, I can't help but be a little angry. I'd just like a break from all this crap and that doesn't seem to be happening anytime soon.


Bowel Obstructions and Vodka

Oh man.

Late Wednesday night into Thursday morning I started to feel the dull, constant pain in my stomach that I know now means only one thing---I'm starting to get blocked up.

Sure enough as Thursday progressed the pain just got worse followed by an intense, thirty-six hour marathon of vomiting. Yes, I counted the hours. Basically every 15 to 20 minutes I was puking. I couldn't keep so much as a sip of water in me. And then I started getting a POUNDING headache around my temples. It was rough. I'm not sure if I actually had a fever because I never actually checked, but I'm pretty sure my temperature had to be elevated if I was feeling that shitty.

Usually I run to the hospital the second I notice pain that is alleviated when I vomit. That's pretty much one of the tell-tale signs that I am obstructed. And you can't really mess around when it comes to them because if your bowel happens to become completely blocked it could lead to much more serious issues, like perforation, which I have experienced in the past and I can tell you it is probably the only time in my life I have actually been in and out of consciousness from pain.

Due to the fact that I burned my bridges at the University of Penn by seeing my doc in Maryland, I really did not like the idea of checking into a random hospital, even though I have done so millions of times in the past. For some reason, even though I was so damn nauseated and in pain I could barely move, I thought I could handle this one on my own. And I guess I was sort of right because by Friday afternoon the pain in my stomach was subsiding even though I couldn't get rid of my damn headache.

By the time I called my doc my pain was improving so he didn't think I needed to be admitted. Basically once I could start keeping fluids down I started drinking as much as I could to get myself hydrated, but it was very hard. I was extremely dehydrated at that point and even though I knew I had to drink, the thought of eating or drinking was unpleasant. I was supposed to follow a liquid diet for a few days, progress to mushy foods, and then back into a low-residue diet for a while. But yea, I just pretty much listened to my body and by Sunday I was eating fairly normal stuff, but just conscious of keeping things simple and smooth.

As quickly as this issue came on it resolved itself. I am still sure I was partially blocked somewhere. Lately this has been happening a bit too often, albeit not as bad as this past incidence. I am going to get my blood checked tomorrow to see if my markers of inflammation are elevated or what. But honestly I feel absolutely fine again. Good enough to drink some vodka and club last night as I watched the Phillies game.

There is certainly a huge difference between bowel obstructions and actual Crohn's-flares but it is still worry-some when the obstructions start happening more often. For now I am just going to look forward to my colonoscopy on the 4th and hope that things look good. My blood tests every month have only been improving, so hopefully that is a sign of what is to come.

Oh, and by the way, I am officially steroid-free!


Baseball and Babies

I was extremely spoiled last week. My family has had a couple of Phillies ticket packages dating back to the last couple of seasons at Veterans stadium. So through the years at Citizens Bank Park we've always had the opportunity to purchase playoff tickets before they go on sale to the general public. Now, my sister being the responsible, positive person she is has always believed the Phillies were bound to go to the playoffs each year. And trust me, we were all happy she believed in them come the 2007 season and particularly, 2008 when everyone wondered how we got suck great seats without paying an arm and a leg for them.

So throughout the 2007 and 2008 seasons I saw some remarkable games and even more remarkable playoff appearances. Unfortunately last year I was too sick to attend so you can imagine how excited I was this year. I probably attended over twenty games this season, which I will shamefully admit, isn't as fun as it sounds. I love baseball, but going to two games a week gets old, and expensive.

And then last week happened. My sister and her husband were supposed to take Wednesday's game, while my brother and I would attend Friday. But being that my nephew is only a month old, my sister decided to lend me her hubby for the night and let me go to the game. And we all know what happened. It was truly an amazing thing to witness and I am so glad I got to experience something so incredible. Here is a shot from our seats after everyone was going to rush Roy on the field and the fireworks were going off. Amazing.

As if that wasn't enough, I got to go with my brother on Friday and witness the Reds collapse from right field again. The misplayed ball by Jay Bruce occurred right in front of us. I kinda felt bad for him but the crowd reaction was pretty hilarious. And I gotta post this pic because of my shirt, taken at McFaddens before the game.

And this picture, just because my nephew is the cutest man in the world!


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.


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?