Infused

So I got my double-dose infusion of Remicade down at the University of Maryland in Baltimore on Friday. I left Philly around 9 for my appointment at noon and luckily didn't run into any traffic. Unfortunately to accomodate me in a hurry I got my infusion at the cancer center rather than my doctors office, which is where my frustrations boiled. I waited for two and half hours before they even started the damn thing. The upside, however, is that the cancer center is "state of the art" so there is a lot to entertain and keep you comfortable while you are sitting there. Each patient has their own section with recliners and a TV, which helps pass the time. After getting my pre-meds, I like to zone out and relax.

They also had a social worker from the hospital come by and talk to me. It was actually really nice because she was a younger woman and informed me about the various support groups at the hospital for cancer patients, people with Crohn's, ostomies, MS, etc. She was especially interested in connecting me with some younger people going through the same thing as me and I found it quite encouraging. I guess it was just nice to see that the hospital is concerned with helping people deal with the emotional aspect of chronic illness. I think our emotional health is overlooked too much by doctors even though it is a critical aspect of completely managing our health.

After my infusion, it was five-o'clock so I went out for some food and drinks with friends in Baltimore and didn't get back to Philly until 2 a.m. I really wasn't sure how I was going to feel so I was reluctant about making plans with anyone because even though I have an "excuse", I hate backing out of things last minute. Luckily I had been feeling good the past couple of days and I think I was riding an emotional-high just knowing that I finally got Remicade started again. One way or another, there is some kind of end in sight, whether it means I am healthy enough to be reconnected or I need to have another surgery.

And then Saturday came. And I felt great. Fantastic even. There were things different about my night of sleep on Friday that indicated to me that something was doing something. I can't even explain it. I told myself regardless of how I felt I would try to approach my day like I wasn't sick until there was reason to think differently. I just wanted to embrace a more positive attitude along with starting this treatment again.

And then today came. And I ate cucumbers and cherry tomatoes with my lunch. And as of five hours later, when I would normally be suffering the consequences of trying to put some variety in my diet, I was fine. Not an ounce of pain or lack of control despite the fact that I had eaten vegetables, and vegetables with seeds in them for that matter.

So I don't know. Is it the Remicade working? Who the hell knows. It certainly didn't work this fast the very first time I took it. But I also know that since my surgery in August, I haven't felt this kind of relief from anything, not even steroids. I was reluctant even to write anything about feeling well because until I have more days like this I will be waiting for something horrible to happen. But right now, in this moment, I know that I am going to wake up tomorrow and not worry about anything. I am just going to be me.

On my ride home from Baltimore late Friday night, I was wide awake. Even after being up for seventeen hours at that point, I was just happy. I can't describe how good it felt to be enjoying the moment with my friends rather than having the worry of my illness occupy my thoughts. And perhaps this is just a fluke. Only time will tell. But I also know the other side of illness, which will make you forget so damn fast about the pain you have felt. I can only hope to piece together one good day after another, until the pain of this part of my life is just a distant memory.

Happy Memorial Day.

Back to Remicade

On Friday I'll be going back down to Baltimore to get an MRI and receive my second, first Remicade infusion! I am quite excited about the latter. The MRI doesn't bother me much either, but I really don't think it is necessary. Last year around this time I had an MRI to look for an abscess and the results showed everything was normal. Well, lo and behold a couple of weeks later I was having surgery to drain the very abscess they didn't detect through the MRI. So combined with the fact that this time around I am a lot healthier and not showing any symptoms of an abscess, I am really hesitant to get it done. But I am complying anyway because my colonoscopy showed a fistula and I'd hate to have something really small causing problems down there, even if I don't necessarily feel them. I have come to understand that with this disease, things can go from normal to horrible in a very short amount of time.

This time around they are going to blast me with the maximum Remicade dosage for my body weight. Rather than induct the medicine in my body at slower intervals, such as one week, two weeks, and then four weeks, they are just going to give me the maximum for my first infusion and then continue monthly (if I've understood correctly; it was explained after my colonoscopy when I wasn't entirely 'with it'). This is certainly not the norm for Remicade but it is a process by which my doctor feels we will be able to tell for certainty if my body will regain responsiveness in combination with the 40 MG of Prednisone I am on. The thought of feeling what I felt after my first stint with Remicade again makes me beyond happy. I know the signs of improvement to look for but I am definitely not getting my hopes up too high because there is a reason my body stopped responding last time. I can only hope that this year and half off of the medicine has somehow changed my body's responsiveness. But just knowing how it made me feel in the past is a hopefulness that is good. I don't know how to explain it but I would rather try Remicade and fail and it than try something new, like Cimzia, and have that fail. I think I will be able to accept it a little bit more knowing that I had a great run with Remicade and it gave me the opportunity to live the best years of my life. And if it can't bring me that sort of health this time around, I am okay with it, because at one point it was so life-changing.

Otherwise, I've been back on this dose of steroids for a few weeks now and I feel great. When I say 'great', I mean, I feel as good as I could possibly feel while still being very symptomatic. I am at least able to go out with my friends comfortably and indulge in food and drinks and not be extremely paranoid that something is going to go horribly wrong. I still get anxiety from time to time that I am not going to be able to cope if something happens. But the important thing is I have that confidence to actually GO OUT and do things. Regardless of what happens, good or bad, when I'm actually out, I am typically able to deal with it in a way that no one around me would even know anything is going wrong.

And wow, I just feel very lucky to have the most supportive people in my life. My friends and family just make this so much easier to deal with. They don't treat me any differently but they also understand that sometimes I have an 'off' day. Lately the off days are fewer but when they do come I know I'm allowed to bitch and moan about this shitty disease and that those around me will be there to crack a joke or two and bring me back to the ground.

Colonoscopies are fun...no, really.

So I did it. I got the colonoscopy over with and hopefully they won't bother me for at least another year. They didn't tell me anything I didn't already know from my symptoms but it is still good to get in there and make sure nothing is blocked or severely malfunctioning.

The preparation was very easy and I didn't actually get specific directions so I just sucked on popsicles and hard candy the whole day before. I always end up cheating on my prep somehow and I didn't disappoint this time. I tried doing the enemas the morning of my scope but things down there are very...sensitive? I guess that's a good word for it. My body was just NOT having it. Still, everything worked out as far as my system being clear enough for them to get a good look at everything.

So my mom and I arrived at the hospital and they got things started the second I walked in. Now, this is the third scope I've had done at the U of MD and the one thing that REALLY sucks is they don't give you anesthesia. It's quite ridiculous. I think it has something to do with liability and money but it can be quite horrible to get a colonoscopy knowing you are going to be awake the whole time. But this time they REALLY loaded me up with Fentanyl and I was HIGH off my rocker. Previously I've had some discomfort when I've been awake for these things. Not this time.

They started out going through my stoma to look at my small bowel but my doctor couldn't find the downward loop of my ileostomy so unfortunately it was necessary for him to go through my bum to look at my colon. I wasn't even complaining as much as I have in the past about discomfort but the guy giving me my drugs (not sure if it is actually an anesthesiologist) was ON POINT. That's the only way I can describe it. It seemed like every time I looked at him he was saying, "Okay, I'm gonna give you some more." I'm convinced that these people get a lot of enjoyment knowing they are getting people high all day. I must say that I've had anesthesia many times for these things and I've always been able to pull myself together the second I woke up. However, even though I was conscious the whole time of what was going on, this drug had me doing/saying funny things.

Like afterwards when I needed to change my gown and I pretty much just ripped off the one I had on and got changed in front of everyone. Or insisting that everyone tell me their name and shake my hand. Or calling my sister and telling her that sentences were hard because I was on so much Valium (I wasn't). And then, despite being wacked out, I made my mom stop for cookies and soda in the hospital cafeteria. But I must say I did feel a lot less groggy and high once I got some food in my stomach.

The results of the scope weren't too surprising. Fistulas, stenosis, and a lot of active diversion colitis and Crohn's colitis. He thinks I will feel 50% better once I start feeding my colon short chain fatty acids. He also wants me on 60MG of Prednisone and to start Remicade again. I wish I would have asked him if he's ever had anyone go BACK to Remicade with success but I wasn't exactly in the frame of mind to ask good questions. So my plan is to take 40MG of steroids (I will be miserable, bloated, psychotic, fat, acne-faced, etc...if I go all the way up to 60) and start Remicade.

Otherwise I feel like shit. There's very little I can do that doesn't end in some sort of frustration/embarassment/discomfort/pain. I've come to the conclusion that I need to stop making plans because I really can't follow through with anything. If you ask me to do something with you in 10 minutes I might be okay to commit, but anything beyond that is risky. And when I can't follow through with things, my frustration just intensifies and I get angrier.

When I say Remicade is the last hope, I mean it. I almost don't even want to attempt this either because I don't know if I can handle another disappointment. I am going into it with zero expectations. The only reason I am even doing it is because I feel like I am more equipped to understand how I SHOULD feel on this drug to know it's "working". I know how sick I was the first time I got Remicade and it healed me then, so maybe it will heal me this time.

Sunday Funday

For the most part I always look forward to colonoscopies. Probably because they are usually a stepping stone to some sort of decision-making. Unlike a lot of other tests, I feel like I get more answers. Not like I need someone to tell me I'm sick but when you feel like shit and don't really feel like things are progressing in a positive direction, it helps to have evidence that can be analyzed. And of course doctors much prefer studying an image or biopsy rather than actually listening to your symptoms.

I'll be going down to Maryland again on Wednesday night to have the procedure done Thursday. I suspect my momma and I might end up staying a few days and depending on how I feel I might try to turn it into a mini-vacation for the weekend. I am not dreading it at all because I don't need to drink anything to clean out my system. I just have to refrain from food on Wednesday and use a few enemas come Thursday morning. And if you've ever had a colonoscopy, you might be able to relate to the ease with which I would rather stick a tube up my ass than drink any form of laxative.

I've also determined that steroids do nothing for me except ease my pain. Every time I am coming off of them or completely roid-free I've thought that my life is so miserable. Now that I've been back on them for a few weeks I still feel miserable but I am not nearly in as much pain. This is definitely a relief but it's frustrating that the steroids do nothing to ease the urgency and volume of crap still bypassing my ileostomy and coming out below. I guess as long as they are doing something, it is worth it.

Another thing I am going to have to deal with this week is that my doctor here has tried to contact me because my pharmacy called his office to inform him that I decided not to have Cimzia delivered. I haven't intentionally ignored his calls, but I haven't exactly been eager to call him back and talk to him. I am just not looking forward to the uncomfortableness of explaining that while I appreciate what he has done for me this past year, I am deciding to move on to someone else. But it is a conversation I must have and I would rather get it out of the way than have to dodge phone calls for the next few weeks. Awkward.

Hopefully next time I'll have more answers.