More decisions

Last week I had a visit with my GI to discuss what is going on and decide if I should continue treatment with Tysabri. At that point, I hadn't been feeling well at all and had been in a lot of pain. We decided to discontinue this treatment.

My doctor confessed he was hoping I had been worn out enough to come to the conclusion that a proctocolectomy was needed. I wouldn't say he was surprised I wasn't "there" yet because he knows me well by now. But his matter of fact-ness about this kind of irked me. It's really not a decision I would ever hope to make in desperation. But I don't think anyone makes the decision in good health, either.

My biggest problem right now is that I have days where I feel fantastic and days when I feel like SHIT. The good is good but the bad is terrible. This is what makes my situation difficult. Just when I think that life, forever, with an ostomy is my best option for a fulfilling life, I start to feel better again and I think that maybe I should hold out hope that one day a cure will be found or I'll find a medicine like Remicade. Forget about the fact that maybe the ostomy is what is making me feel better. Instead, I get so focused on the need to reverse this thing as soon as an inkling of good health returns.

In many ways I just wish there was some consistency to this disease. I almost, ALMOST, wish I hadn't had those three years of health with Remicade because then I wouldn't be hopeful that the next treatment would send me into a similar remission. Every time I think about those years of my life and the normalcy it brought me, I am optimistic about medicine helping me get back there. I think anyone would prefer a medicine over an ostomy to bring them health.

Earlier this week I was convinced that I wanted to call my surgeon and schedule a consult for a proctocolectomy. I just want to live my life. I want to move on and do all of the things that I know are in store for me. I have so many plans, dreams, and goals for myself and sometimes I just get so mad at this thing that is out of my control dictating my life. I want the control back, and I know the ostomy would give me that. My problem? It's so effing permanent. And it's a big decision.

Thus my other problem. The bottom line is, this is my decision alone. Regardless of the support I have around me, I am the one who has to change something about my body for the rest of my life. I alone am the one who will have to explain this to friends and boyfriends and employers. No one else. Just me.

So the conclusion we made at the end of my GI appointment was to discontinue Tysabri and start Cimzia along with Imuran in five weeks. Yes. I have to wait ANOTHER five weeks before I can even begin these drugs and then wait two months to see if they actually work. To me this seems like a step backwards to be trying more Anti-TNF drugs and Imuran, which I've also been on in the past. It just adds to the feelings I have that I'm wasting my time for absolutely nothing. Even my doctor agreed he is not optimistic at all about Cimzia working for me.

In the meantime, I've decided to seek a second opinion from my old doctor in Maryland. I really want his opinion before I try this new medicine or opt for surgery. This needs to be done either way so I might as well get it out of the way while I wait around. My appointment at the University of Maryland Medical Center is on the 23rd. I am actually a bit excited because I think a new set of eyes to look at my condition will help. And I am encouraged at the prospect of those doctor agreeing that maybe the temporary-ness of the ostomy I have now could be improved with a revision.

I honestly feel that if my doctor in Maryland tells me I need to have a proctocolectomy then I might be ready to take that step. It's just a matter of hearing it from someone else, I guess.

I could have been a rocket scientist

I guess today is just one of those days that this effing disease is sucking the life out of me. I am so damn frustrated at how I've been feeling this week. I've been in a lot of pain, laying in bed, and pretty much running in and out of the bathroom because my ostomy is useless. It just doesn't make sense to me at all that no one can seem to give me an answer to explain why it is that I sit on the toilet more times a day than I have to empty my bag. Why do I even have this terrible piece of crap attached to me if it doesn't even serve a purpose?

As twisted and effed up as it sounds, I'd rather continue to feel like shit as I wean off steroids than to be on the dose I was merely feeling "okay". I want it all or nothing. If I'm going to be on 40 MG of steroids and have to deal with the awful side effects, then I should be feeling like a million bucks. And while I did feel a lot better, it wasn't enough.

It can be really frustrating sometimes. I finally felt like I was doing good things for myself and getting back to productivity despite my situation. But now I've spent the past couple of days in bed and I wonder how many times a person is capable of bouncing back after these little set backs. Each time I tell myself I won't be able to do it again, but I always do. It's just not fair. I just want my routine back and some sense of stability.

I really wish sometimes I would be able to be completely, 100% honest with people about what I go through. There are some things I just can't convey. People keep asking me if I'm ready to go back to work and I just have to smile. There's nothing I'd love to do more than get on with my life so when people ask me stuff like that it just makes me angrier that I'm unable to move on right now.

I feel like lately everything has been telling me to have a proctocolectomy so I can move on with my life. There is so much I want to do and the uncertainty of the future with Crohn's is enough to keep me from pursuing my dreams and goals, even if I were to find a medicine that worked for now. I don't want to have to worry about going back to school and getting a job only to get sick again. I don't want to blink and wake up and be thirty and still be sitting in my bedroom angry at all the things I didn't do because I was waiting for a medicine to come along to fix this. And still, knowing all of this, I cannot mentally fathom making that leap and making this permanent, even if it gives me my life back.

New Orleans and beyond

I highly recommend that you all stop what you are doing right now and plan a trip to New Orleans. I'm sure my best friend, Claire, will let you stay with her! In all seriousness, I had an absolutely fabulous time last week visiting her.

I really didn't feel well at all last weekend but I spent a couple of days in bed and drank lots of water and things seemed to resolve on their own. I've noticed I go through these bouts sometimes. They aren't flare ups but I suspect that somewhere I am blocked up a little bit. I can tell this based off of the difference in pain and the quickness in which the problem is resolved. It's usually just a couple of days where I really feel like garbage and can't do much. Anyway, I was obviously quite concerned because I wanted things to be okay once I left for my trip on Monday.

Everything went smoothly during my travels and I really didn't have many problems despite the fact that several adult beverages were consumed. The highlight of the trip was definitely St. Patrick's day and I really can't imagine how much more insane it is down there for Mardi Gras. The energy of everyone is very contagious and you can't help but fall in love with the culture. I really wish I was better at taking pictures but unfortunately I haven't been so great with that lately so I have nothing to show you.

I will admit I was a little nervous about the prospect of being chosen by TSA for additional screening. I've noticed that the TSA in Philadelphia is a lot more lax when it comes to things than the rest of the country. On my way back here, the TSA in New Orleans scanned my bag four times. Keep in mind that in Philly they didn't look twice at it. It seems quite ridiculous because if they notice something suspicious the first time they should just inspect in right then as to not draw even more attention to that person. So naturally they had to pull all the shit out of my carry on and put my business on blast in front of twenty people. Maybe I'm being dramatic but in the smaller airports things are a little closer and you are more likely to know what's going on around you. Anyway, that's my TSA rant. I really shouldn't complain. It could have been worse.

As far as my health, not much has changed. I see my doctor this week and I am honestly not sure if my symptoms have improved enough to continue Tysabri. I guess we will discuss that on Tuesday. In brighter news, I will be down to 15 MG of steroids tomorrow, which is the lowest I have been since I started them in November. However, I'm not sure if this is a sign of my improved health or merely the fact that I've gotten better at living far from one hundred percent.

We shall see...

Number Two

Number two. Get it? Continuing the list of things that suck about being sick/having Crohn's.

2.

Everyone has an opinion.

One of the things that really sucks when you are sick is hearing other people tell you what you should and should not do. With Crohn's in particular, I think the misconceptions far outweigh what people actually know about it. And that's not to say that for the most part the people I come across don't have the best intentions. It just doesn't help that puke and shit and guts aren't exactly the best topics for friendly conversation. I can admit myself that I have downplayed the seriousness of this illness or the grossness of it just because it's not an easy thing to talk about. At all.

I think I can speak for all Crohn's sufferers when I say the most irritating thing is when people try to tell you what you shouldn't be eating. I do believe that diet has an effect on symptoms. It's a no brainer; when you have a digestive disease and you eat something that's harder for your body to break down, it's obviously going to cause more problems. However, I explain to people that I'm damned if I do and damned if I don't. Right now in this in between phase I seem to be in, I've been watching my diet stringently and have definitely felt better. But there are times I just count my losses and enjoy a salad or a beer or two, or ten (ha!), knowing that it might make me miserable.

Another thing I hear a lot is people comparing my situation to some friend of a friend who has Crohn's and tried this or that diet or medication or vitamin and found relief. What people don't understand is that this disease is very different for each person. Crohn's can affect everything from your mouth to your ass. There's a lot of intestine in between there and the differences in symptoms will vary greatly depending on which part of the bowel is involved. Therefore, everyone who suffers is different. Everyone has their own way they handle this and it can be quite frustrating when someone believes that because something worked for someone they know, it's going to work for you, too.

I think when all else fails, the best thing you can do for someone is be supportive. Empathy goes a long way with this thing even if you don't completely understand what you are being empathetic about. Just telling someone you're there for them or you can't imagine what they are going through is sufficient enough.

/end rant.

Tysabri #4 tomorrow. I'll let you know how it goes.

News flash: Chronic illness sucks

As if I don't complain enough on here. I've been thinking a lot recently about all the little things chronic illness does to make your life complete misery. You know, aside from the obvious things like pain and fatigue. I've gotten kind of bored with merely updating you on the yo-yoing of my illness. So here's the first of my list of things that suck about being sick. More to come.

1. The Ups and Downs

Certainly when you suffer from any illness or live with someone who does, there's a lot of emotional ups and downs. But the ups and downs I'm talking about here is weight. Weight can be quite a big issue when you have Crohn's. I've gained and lost 30+ pounds in a matter of months than more times than I can remember. This has inevitably left me with beautiful reminders all over my ass and back called stretch marks. Now, at this point I don't really care about them but they certainly aren't as character building as say, the scar on my abdomen. I wear that scar with pride (most of the time). But the stretch marks, ew.

Also, my wardrobe consists of clothes ranging in size 2-10. It's been a while since I've worn things in the higher end of that spectrum but I still keep those clothes around because you never know when you are going to blow up. Luckily I've managed to keep off the steroid 30 this time around. On the opposite end, the smaller sizes are clothes I wore in high school and my first year of college. They aren't exactly clothes that match the current trends nor reflect the fact that I am almost 26. But they fit me and I refuse to squander money on my credit card to buy clothes that may or may not fit me in a couple of months. I've also learned that each time you gain a significant amount of weight in a short amount of time, it doesn't go to the same places. 120 pounds will have you in different clothes each time. Sometimes your ass is bigger, sometime it's your legs. You just gotta try on that size 4 or 6 and hope it fits. If not, put on a loose shirt and you'll be the only one aware of the muffin top going on underneath.

In short, us Crohn's people never quite have a sense of self. Your body is constantly changing, people are constantly commenting on it, and you are constantly aware that weight is always going to be talked about at your next doctors appointment. They even have a nice line graph in my chart documenting my fluctuations in weight over the course of the past three years. I don't know about others with illnesses and Crohn's in particular, but as a young woman, it can be frustrating and it's never something I've been comfortable with. Maybe it's because of the fact that when I am healthy I like to take care of my body so the weight talk when I am unhealthy just reminds me of how it has changed and I don't quite have the same control. Regardless, I know that people have the best intentions when they comment on my weight and tell me how "healthy" I look. It's just not always the easiest way to hear it. I had a friend comment the other day that my eyes looked like there was finally life behind them and honestly that was the best comment I could have heard in regards to someone noticing that my condition has improved. I'd rather hear those things, like that I don't look as pale or my hair looks shinier or I look happy.

Anyways, that's all I am going to say about weight and I'll add more to the list at another time. In other news, I talked to my doctor yesterday about my symptoms and he thinks that while my improvement has been very minimal, he can allow me to get a fourth infusion of Tysabri under the condition that I keep tapering off steroids by 5 MG each week. Right now I am at 30 MG and I haven't noticed any sharp increase in symptoms so that is okay with me. He basically told me I have three options. We could go in and do a complete colectomy (which I'm not ready for), try Tysabri one more time, or wait a month and start Cimzia (another Anti-TNF which I probably won't respond to since I failed with Remicade and Humira). Obviously continuing Tysabri seems like the best choice out of all of them. I am hoping this infusion pushes me over the edge and I REALLY start seeing the relief I need.

Even though I am not at 100% I have been feeling great as far as my energy levels which has allowed me to become quite ambitious in the past couple of weeks. I'm going to visit my BFF Claire in New Orleans in two weeks, studying for the LSAT, and I'm joining a Field Hockey league with my other BFF Anne. Hopefully I can keep my optimism intact for all of these things I have planned. On the phone the other night my doctor told me he was looking forward to seeing me on the 30th and that we will hopefully be planning my next surgery, my reversal. Heck, if he is optimistic, I can be, too.

Waiting

Physically I have felt like garbage the past couple of days. Last weekend in particular was harsh and I found myself experiencing a different kind of pain than usual. This time it was more like a steady, sharp pain. It was far from excruciating but the level of pain changed as I adjusted how I was laying. These are often the pains I worry about because I have had similar pain experiences with all of my bowel obstructions. Whenever you twist and turn and your pain changes, you immediately think your bowel might be caught in a twist as well. At least that's how it's been for me in the past. Luckily I felt better after two days of laying in bed.

But then I have other pains usually in the early morning hours. From about 4 am on I am subject to a lot of cramping and my insides don't seem to settle down until anywhere from 10 am to 2 pm. During that time it is frustrating because I am in and out of sleep and I often cannot get more than a half hour of uninterrupted shut eye. Lately, however, I've been able to get on with my day as early as 9 a.m. which is much better than sitting around all afternoon waiting for things to quiet.

So here I am, waiting on Tysabri to take effect. This third infusion was supposed to be the magic number and I suppose in a couple weeks when I see my GI they will conclude that it isn't offering me any therapeutic benefit. Considering I am still on 40MG of steroids and unable to taper, I would have to agree at this point. We still do have a few weeks before we totally give up on it and I am trying to remain optimistic, but right now that is certainly hard to do. I imagine I should feel a significant improvement in my life like I did on Remicade and I am so far from it that there is no question in my mind this drug isn't cutting it at the moment.

The good news, if any, is that I haven't experienced any of the horrible headaches I got after all my other Tysabri infusions. That's quite a relief. But yes, that's the only good piece of news I can muster from this.

Anyway, on Thursday I went to support group again. I really haven't gone back since the first time, mainly because I wasn't feeling well and I was kind of discouraged with being the only person in their 20's at the meeting. But I figure if I have nothing else to do, I might as well socialize with people who are the closest to understanding what I am going through, even if they are in their 50s, 60s, and 70s. And, well, they are old people. And you know what? Sometimes old people say some funny shit.

I feel like often I offer more advice to others dealing with this then I get in return in the support group. Maybe this is because I am hung up on the fact that I have yet to meet another person in their 20's who is dealing with this. With this support group in particular, everyone but me had their surgery because of cancer. I try to relate to everyone but it can be hard. The reality is that most people don't die from Crohn's. I often wonder if the decision to have one's colon removed and opt for an ostomy is any easier when you know the alternative could be death. Either way, removal of the colon isn't always the ONLY option, but for cancer patients, it's often a better one when considering how it will aid doctors in administering chemo and/or radiation.

Sometimes I feel like a hypocrite when I offer my thoughts on having an ostomy to these people. I mean, how can I tell someone who is clearly distraught about it that it's not the end of the world and it will get better, all while my colon and rectum are still with me? Damaged they may be, but I have not had to endure their loss yet and that is a huge step that many of these people have had to come to terms with. Of course it's easy for me to say you can get through it because I have the hope of reconnection. For them, the decision has been made and there's no going back.

I don't know, as much as I tell myself I don't want to go to those meetings, I enjoy it. There's always a few married couples and one of them is supporting the other in their adjustment. The guy that started the group did it five years ago for his wife who had cancer. Then you have two friends who may come together just because it's their first meeting and they need the support. There's people contemplating this route surgery-wise or have it planned already who have no idea what to expect and desperately hang on every word spoken as to get any clue about what life might be like afterward. And then there's just individual people, like me, who live their lives because their life with an ostomy is a hell of a lot better than it was before. And after the initial shock of the surgery wears off, I think that's something everyone can agree on.

Another thing I realize at these meetings is that you just never know what people are going through in their lives. I think we sometimes assume that someone's misery in their life is going to be written across their face and the second they are in a crisis it will be evident. Sometimes I worry that people forget how sick I still am because the physical reminders are not so marked anymore. I guess my point is just to give people the benefit of the doubt. If you looked at me, you would never know I have an ostomy, never know about the past year of my life and the struggles I still go through every day. And while I try to never let my illness affect how I treat others, there are certainly times I have probably come off rude or curt to someone I've interacted with throughout my day simply because I did not feel well. Maybe I'm trying to say that I'd like to think most people in life have good intentions and you just never know what anyone is going through on a particular day.

I could easily throw up my arms right now and be sad about Tysabri not working. I won't lie, every day I get upset at least once about it. But the second my episodes are over or I know that I'll be okay to leave the house, I forget all about the pain, even if it was just a few hours before. It's pretty amazing to think how quickly you learn to adapt. The bottom line is, it's much easier to live your life when you can than to spend it being upset about the several hours a day that don't go right. Right now, I have about eight hours a day where I feel okay. And I'll take them happily cause it could be a lot worse.

Well, this was a bit all over the place but a lot happened this week that I am still digesting. Get it?

Tysabri Infusion #3

I just got home from my third Tysabri infusion. I must say it was quite an ordeal this time around. I was supposed to go on Wednesday but due to the weather they moved it to today and I'm pretty sure everyone else had their appointment moved to today as well. The thing with these infusions is that you don't want to wait any longer past your 28 days and understandably I wanted to get it in before the weekend. So while it took two hours before I was even registered, I'm glad I got it over with and was able to handle being at the hospital for five hours.

I think I'm going to be hyper-sensitive to my symptoms for the next couple of days and desperately searching for the slightest signs of improvement. I'm gonna keep doing my thing every day but hopefully things will be a lot easier and my mornings, which are typically the roughest, will start getting better.

As I've mentioned before, this infusion of Tysabri is do or die. If I don't see some improvement in the next couple of weeks then I won't be going for #4. I really haven't been able to get below 40 MG of steroids. At this point the steroids aren't doing much. I'm trying to think back to when I started taking them because I did profess that they were working. However, I don't know if I was simply content just to have some relief even if it was small or if they were actually doing more then. It's odd because sometimes I'm convinced I'm just taking a sugar pill because I don't really have the typical steroid side effects either. No crazy appetite, moon face, or mood swings. Maybe there's a conspiracy going on at my pharmacy from all the bitching I've done every time they've screwed my medicines up or didn't have things ready when they promised. Yea, let's just blame it on them.

Anyways, I'm looking forward to a low key Valentine's Day weekend. Nora, I wonder what Ryan is going to get us!?!?

Just dance, gonna be okay...

Yea, I did it. I quoted Lady Gaga.

Anyway, the past couple of weeks have been rough to say the least. I felt wonderful after my last infusion for a few days and was quite certain it was the Tysabri working its magic. I still think it could have been the last infusion because quite honestly the 40MG dosage of Prednisone hasn't been working the way it did before the last time I tried to taper. So either my disease is getting worse, which I doubt, or I was in fact feeling some benefits from the infusion.

Basically, I've been waking up day to day not knowing how the heck I'm going to feel. I usually take it easy in the morning hours while I get a grasp on how my disease is going to behave today. Even if I feel crappy in the morning, for some reason I am always given the 5pm-12am window of relief. And I gladly take advantage.

The positives of the past two weeks are that I have gotten back to exercising. Understandably I am not quite back to my usual routine of running miles and miles outside to nowhere in particular, but rather I've been trying to walk as much as possible on the treadmill. The problem is that I have absolutely ZERO energy and I am convinced that as long as I take Ambien, I will never truly be awake. I try to only take it when I absolutely need it but this is most of the time. When I wake up in the morning I have that Ambien fog in which I don't want to sleep all day but actually making it out of bed is very difficult.

As much as I hate Prednisone, I'd rather have the euphoria usually associated with this medication than the constant fatigue I experience when I'm trying to taper. And I'll be honest, the second I feel good, I give myself a few days and then I try to decrease my dosage by 5MG because quite frankly, I don't want to be on it for longer than I have to.

At the same time, succumbing to running on the treadmill infuriates me as a runner. It's certainly not the most ideal situation and I don't get the same effects. But I need to resign to the fact that it's something and I'll take that over nothing. There's just something about running in one place and being stuck inside that stifles my soul and only reminds me that I am far too sick still to be running outside with the rest of them.

And so that is my conundrum at this juncture in my life. I am far from healthy, but far from being sick. I am stuck in this middle ground. If you asked me a year ago if my situation right now would make me happy, I would have told you yes. I would have thought that being able to walk and run and be a part of my friends lives again would be the greatest thing in the world. But eventually, like anything in life, we all want more. Suddenly it's no longer sufficient enough to merely be passing through life, living and breathing, because now I want to participate in life the way I could before. And right now, I can't. I need more consistency in the improvement of my symptoms.

I want to be the better version of myself that has been lurking under the cloud of Crohn's for so long. I miss the randomness with my friends, not planning anything out, just flying by the seat of our pants. These days, I need to have much mapped out for me to feel comfortable doing anything. And if I'm not comfortable, my friends aren't. And I never want to compromise anyone else's good time at the sake of my own problems. I know I just need to appreciate what I can do right now but it's hard because what I can be is only one small percentage of what I am.

And yet every day when I walk on the treadmill I can't help but be bitter and feel stifled at what this disease has done to me. There I am, in my sisters basement, only in control of how fast or sharp of an incline I walk on. I don't control what is around me; a world moving on while I am merely replacing one foot step for another in the same exact spot I placed it in my previous stride. I am inside and everyone else is working, making plans, living life, and figuring shit out in the process...

At least when I ran outside I felt like I was going somewhere, even if that somewhere meant I would return home in an hour. But there was always the chance that I would be inspired to run off my usual path and take a longer, sharper route home. I want that option even if I don't utilize it.

I want to make mistakes. I want to fall down. I want to have the option of taking a more difficult path in my journey. But there's not much falling down you can do when something totally out of your control dictates how you are going to feel every day. I can only control how I respond. And right now I am choosing to get on that treadmill every damn day as long as God gives me the energy to do so.

Tysabri Infusion #2!

On Wednesday I received my second infusion of Tysabri but I was holding off on writing about it because I wanted to see how I felt. I am always hesitant to write when I am feeling well because I don't wanna jinx anything. I know it's completely irrational but seeing as how Tysabri is pretty much my last hope at getting back some normalcy, you can understand my hesitance.

The infusion itself went smoothly and I was in and out in about three hours. Unlike when I was on Remicade, I'm not subject to a Benadryl coma beforehand so I find I am not as bogged down afterwards. It's a much easier infusion for me to handle and it's faster, so I'm happy.

Despite treating my body like absolute garbage the past week, I am feeling great. My doctor and I discussed which symptoms were still acceptable to have and I feel comfortable trying to taper off steroids again. This will be the real test of Tysabri. If I can get below 20 MG of Prednisone and still feel like I do right now, then I will be comfortable in saying that Tysabri is providing me the relief I am experiencing, and not the evil stuff.

In short, the verdict so far is that I do think Tysabri is having an affect on my Crohn's. I have definitely noticed a sharp decrease in my symptoms in the past couple of days. And like I said before, I haven't been exactly getting enough rest or eating the right things so I can only imagine what a couple days of good shut eye and proper nourishment will do.

I also had my eight year Crohn's anniversary on Friday. Typically I don't even stop to think about that day although it's always in the back of my mind, but considering how I spent all of last year, I couldn't help but reflect on the roller coaster ride that has been my struggle with this illness. EIGHT freaking years. I can't believe it sometimes. I really wonder where all the time has gone. Hopefully the way I feel right now is a sign of things to come and next year I'll be too busy being happy and healthy and January 15th will just be another day on the calender.

To roid or not to roid...

Oh, steroids.

I wish I could say I haven't update in a while because I've been out and about feeling fabulous. Not the case.

I can never bitch about steroids enough. I absolutely hate them. Last time I talked to you all I was tapering down but I think I was in denial about the return of some of my symptoms just because I was so anxious about getting down to a lower dosage. I'd say as soon as I got below 30MG I was feeling much different as far as my Crohn's symptoms. Not to mention the fact that I went from feeling like I was on speed (not that I would know) to only being able to stay awake 6 hours a day. It's scary how fast your body develops a need for them and how hard it is to taper down even at a slow pace.

So I saw my GI this week and based on my symptoms we decided to increase back up to 40MG a day until I see some sort of improvement on Tysabri. I am okay with this just because I've really started to live my life again and it was hard for a couple weeks when I was feeling not so great to not be able to do those little things that make me feel human. I think an important part of recovery is just getting out of the house and being independent. After not having that for so long, I need it.

Last week I got to return to my old stomping grounds in Maryland to see my very best friend, Claire. It was awesome because I used to travel down there at least once a month after graduating college and due to being sick, I hadn't been back in a year and a half! It also helped me realize how many of my symptoms had returned that I was continuing to ignore. When you are driving 3 hours and spending time away from your comfort zone, it's like a slap in the face. Once you don't have your normal routine and crutches to rely on, you take a step back and realize real damn fast what's going on. Sometimes I'll be doing something in the morning to prepare for a day out and I just stop and think to myself that it is extremely fucked up that I live this way. I don't know. Some things are just so second nature to me anymore that would seem really horrible to a normal person.

Anyway, I had a fabulous time hanging out with Claire's family, smoking black and milds, watching reality TV, and drinking gatorade. Yea, it takes a lot to entertain us! That's the wonderful thing about having good friends. The simplest things are fun enough and sometimes I really just need to keep it simple. After seeing Claire, I drove to another town in Maryland to see Jill and I think our whole time was spent walking around a mall. But it was oh so fun!

So I'll be going for my second Tysabri infusion on Wednesday and I'm really hoping I see some improvement after this one. Like I said before, if there's no improvement after infusion #3 then I'll have to stop taking it. I would really just love love love to be able to try the steroid taper again. I'm not looking forward to the effects of it but I just hate knowing I'm taking a medicine that is so darn bad for you.

I shall update again after my infusion and I'll be tweeting live from the infusion suite. My hope is that someone will actually read them and find it helpful. Minute by minute updates people! Get excited!!!

This week and other things

I am taking a break from some very intense Mario Brothers playing on Wii. I am absolutely addicted. I haven't really played Wii much since we got it but my brother, Liam, got me the new Mario and I feel like I am 12 again. I am getting frustrated and tempted to throw the controller through the screen. So yeah, I figured now would be a good time to set the game on pause.

In other random news, I've also become addicted to twitter. I've had a twitter account for quite some time now and never really understood the fascination until recently. I'm not one to update my facebook status much and I usually make fun of people who feel the need to divulge every single detail of their life via their status. But I feel like at least with twitter, people come there and expect random and trivial thoughts. When the Phillies Roy Halladay trade stuff was going down, I was on twitter constantly waiting to hear what people had to say and I think that's when I understood just how cool it is. It's a better forum for sharing both totally useless information and actual news stories as they break. My twitter is /sweener if you want to stalk me :) But please, follow me so I can follow you.

Also, my brother-in-law and sister, Nora, made a book for me on blurb.com with all of my blogs from the past year. It's really neat and resembles an actual book, complete with a picture of me on the back. They claim they didn't realize the color of the book they picked would be so brown-ish. But I think it adds character to a book with the title, "The Swollen Colon".

Anyway, in Crohn's-related business, I've been feeling okay. I was convinced for a couple days after my Tysabri infusion that it was working right away but it was more my head telling me I wanted to feel better. I think that's a good thing though because a few months ago I couldn't imagine myself being optimistic about anything treatment-wise. As much as I wanted to come on here and praise Tysabri as my next Remicade, I resisted. Really, I'm not sure what's going on. I just feel stuck in a rut. I'm not extremely ill and I am far from feeling like I could resume a normal life.

The good news is that I've felt comfortable enough this past week so drop my steroid dose down another 5 MG's and I will do the same again tomorrow. The week before I got my Tysabri I kept steady because I was feeling like absolute garbage. And as horrible as my energy is right now, I can deal with it. It's the intestinal symptoms that are the hard part. As long as they are manageable, I am comfortable decreasing the roids. So tomorrow I will be down to 20 MG, which is great because I expect some of the Prednisone side effects to diminish now.

Well, I think I took a long enough break to resume my Wii playing. My heart rate has gone down and I'm not all hyped up anymore. Who would have thought Mario could be so challenging?

The Big Day

I received my first Tysabri infusion this morning! I will admit I was very anxious, but not a nervous or scared anxious, just ready to get started and find out if this drug will work for me. I actually wasn't scared at all despite the fact that I had to sign over my life in what seemed like the millionth round of paperwork, this time to cover the ass of the hospital where I get my infusion.

I arrived for my appointment early to sign the stuff in my doctors office and then proceeded to the cancer center where the infusion suite is. My appointment was at ten but of course nothing could simply be a smooth ride. Even though I know the insurance approval went through already, the infusion site claimed they had no knowledge of this. So of course they had to call my insurance company and confirm this for themselves. It's understandable and considering the price of Tysabri I certainly wouldn't want to be surprised with a bill come January. Anyways, after they got the OK from my insurance company the pharmacy got going to prepare the drug.

I didn't get back to the actual infusion suite until 11:30 and like I have read online, the infusion itself only took one hour. They monitor you for an hour afterwards to make sure you don't have an allergic reaction. I am not sure if this is also the time frame in which PML would strike, but I would assume they look out for those symptoms, too. By 1:45 I was on my way out. I am thinking now that the first one is out of the way, the rest will go a little more smoothly and it won't take as long.

I am curious because I have not talked to anyone who has Crohn's and received Tysabri. From those I have heard of with MS, it took at least two infusions before they started to notice an improvement. I am not suspecting anything dramatic but I hope this allows me to smoothly transition off of steroids in the next couple of months. Last week I decided not to taper down because I've been having some pain and other symptoms. I just want to be roid-free and healthy.

Right now I am absolutely exhausted and looking forward to a good nights sleep. I am glad that finally, after all this time, I am on some kind of treatment that isn't steroids. It is crazy to think that right now as I type this, there is something completely beyond my comprehension trying to change my life.

Yay.

Five Days and Counting...

Today I finally got a phone call from my doctors office and the case manager who will be keeping tabs on me while I am taking Tysabri. After two and a half weeks of waiting, the insurance approval and paperwork all went through and I am cleared for my first infusion on Wednesday at 10 a.m. I had already filled out paperwork months ago when I originally considered starting Tysabri, so I was quite anxious and getting impatient that it was taking so long to get my appointment set.

For those of you not familiar, Biogen Idec is the company that makes Tysabri and you must enroll in a prescribing program called TOUCH if you want to receive the drug. Basically, because of the risks associated with Tysabri and the stringent requirements to receive the drug, the FDA mandated that all patients be followed closely while they are treated. This is to ensure that you are taking the drug correctly and the infusion site is monitoring any potential reactions, PML (progressive multifocal leukeoncephalopathy) being the most serious. I highly recommend you google "Tysabri" or "Natalizumab" and read about the drug history because it is quite interesting and will help you understand the decision I had to make.

What this means for me is that I should see some sort of improvement before twelve weeks or it is recommended I discontinue. Also, I must continue to wean off of steroids and be totally steroid free in six months, which I expect to be if I continue to taper off at the pace I am going. I am on 30 MG of steroids right now and I will be decreasing to 25 this Sunday. I have not noticed a significant change in my Crohn's symptoms compared to 40 MG but the decrease has certainly taken a toll on my energy levels. But that's another story.

So on Wednesday morning I will receive my first Tysabri infusion at Penn Presbyterian. It is some comfort that I am familiar with the infusion site and the nurses there from my time on Remicade. The infusion itself only takes an hour but I suspect that with the post-infusion monitoring and other stuff it'll take about 2 1/2 hours.

I am certainly nervous and I am sure I will be scared come Wednesday morning, but mostly I am just anxious to get the first one out of the way. I am trying not to think about it because really the hard part is over. I have read the small print and heard all the horror stories of the risks associated with Tysabri. The tough part of listening to everyone's opinions and considering my own doubts. Now it's just time for me to get better and I will be the happiest person alive if, by this time next year, I can say that Tysabri made 2010 better than 2009.

I am ready to turn a new leaf.

The next few weeks

After reading yesterdays Thanksgiving blog, I couldn't help but laugh and smile at my optimism. The one part made me laugh especially was when I eluded to being free from referring to this Thanksgiving as one where I was sick or in the bathroom the whole day. Sure, this Thanksgiving day was great. But call me crazy, I think Thanksgiving 2009 might somehow be referred to as the one that occurred the year Ellen had two surgeries. I'll try to keep it optimistic but I think it would be forgivable if somehow along the way that great day got lumped together with this shitty year I've had.

Anyway, I had an appointment with my GI doctor last week to discuss how I've been feeling since I started Prednisone and also plan the next step in my treatment. Thankfully they agree that I should start tapering off steroids soon. So beginning this Sunday I am going to decrease my dosage by 5 MG per week. Historically I have always had a miserable time coming off steroids even at the slowest of paces. I am pretty sure this time around if I start to feel like crap I am going to take it even slower, at least to get me through the holidays.

We also agreed to start monthly infusions of Tysabri immediately. I talked in great detail about this drug before but feel free to google it. The main fear with this drug is developing a rare brain infection called PML. However, most of these PML cases happen to those taking Tysabri for Multiple Sclerosis and also patients who are concurrently taking other immune lowering medicines at the same time, like Remicade or Methotrexate. The goal for Tysabri is that it will start working for me just as I'm weaning off Prednisone, so as to not notice the usual intestinal problems that always return as my body gets less and less steroids each week. If I can successfully free myself of steroids this way, they will assume the Tysabri is working and also expect to see other improvements that steroids have not fully given me. The magic time frame is six months to be totally free of roids, with some improvement being seen after three months. My first infusion is in a couple of weeks before Christmas and every 28 days thereafter.

I'm starting to get to the point where I'm comfortable with my doctor and we don't spend half the appointment going over my history again and again. I guess after how sick I was this year he really learned my case, how my disease works, and my preferences for how to deal with it. He has also had a fellow joining in on my case. I like this guy a lot. I guess since he's only a fellow he's very attentive, knows my case inside and out, and seems a little more relatable than my doctor. He really did a good job explaining to me how exactly Tysabri works with the brain, rather than the rubbish I've read online that only really confused me. My GI doc couldn't believe how great I looked at my appointment. I have put on 20 pounds! Happily! Most of it came back on right away but then it stopped for a while, of course until I started Prednisone and became obsessed with cooking and baking. It's been enjoyable. Although if you asked my family they would probably tell me to lay off the baking before we all get fat.

Thankful

Just last year I was posting about my Thanksgiving, saying how I had chosen to eat over being comfortable and I was paying for it. This year it didn't even cross my mind that I might have to sacrifice my Thanksgiving gluttony for the sake of my poor intestines. Yes, this year was much different.

I made the whole meal for my family, with some help from ma and pap. It's now almost nine and I want to pass out but I was fine throughout the day. It felt great to be back to my old self again; making food and teaching my family a thing or two about the fine art of following a foodnetwork.com recipe. I decided this year with my new found attitude (thanks to the roids) to stray away from all of our old Thanksgiving staples like whipped potatoes with chive and the Campbells soup green bean casserole. Instead, I literally made everything from scratch, including frying my own crunchy onions for the green beans. It turned out to be quite a success. I couldn't be happier.

Just thinking about last year compared to this year makes me a little sad. Maybe because they were two totally different experiences and yet there is still so much uncertainty with my Crohn's. But I am going to be happy that in this moment, when I look back on Thanksgiving 2009, I will remember being with my family, sipping on my favorite wine all day, and laughing at the assignments I gave each of my family members who insisted on helping in some way. Cause if I think about it, holidays in the life of a chronically ill person are often referred to in terms of the status of your health at that particular time. It's always, "The Christmas right before Ellen got sick" or "The Thanksgiving Ellen spent in her room and in the bathroom". I am glad we can say different this year.

Just last night I got to spend time with friends I hadn't seen in ages who were my partners in crime in high school when I received my initial diagnoses at age 17. Granted I was a tad paranoid, a little bit in pain, and overall nervous about being so far away from home, I am so glad I saw them. I am thankful for my wonderful, amazing, and beautiful girlfriends. Old and new. It's amazing how you can not see someone for ages and the second they open their mouth, you're laughing and you remember why they were such a part of your life before. Times may change but there are certain people, regardless of where your respective lives have taken you, who always express the very sentiment you need at the perfect time. Things often come full circle in less time than you would have imagined.

I have wonderful male friends, too, who have been in my life essentially since birth. They may frustrate and annoy me, and many times I just don't get them but they always have my best interest at heart. I am thankful to have guys in my life who reassure me that my ileostomy is not the end of the world and point out the few advantages of having one in the most lighthearted way possible, who tell me my hair looks good because they know I'm self-conscious about it, and who constantly reassure me that I am beautiful, even on steroids.

And lastly, I can't help but turn this into a sap-fest because of how today feels. Just the milestone of knowing I felt a certain way at this very moment last year that I cannot even fathom today. To think at this time last year I had no idea what was ahead of me and now there is at least a plan in the works. Here I am typing to all of you with a full, pain-free belly. It makes me so thankful for my family because they are pretty much the most amazing people in the world. Every time I get upset my dad reminds me that Crohn's will not define my life. And that's not always an easy pill to swallow when you are in the midst of pain and anger but he is right.

There is much to look forward to in the coming months, much to be scared of, and much to be thankful for. Today, I am just thankful that I am in a place where I can find happiness even though I am still suffering from a horrible, debilitating disease. Nothing will ever be perfect but at least today, on a day surrounded my family and friends, I can see the light at the end of the tunnel. Faint and far it may be, but it is within my reach and I know the road I need to take to get there. I will get there. We will get there. And for that, I am grateful.

Road Rage

As much as I hate to admit it, steroids work for me. My current dosage seems to be working well in that I am not experiencing horrible side effects but my disease seems to be under control. Sure I've got the occasional emotional outburst (who's to say that's the roids talking) and a ridiculous increase in appetite, but I'll take it. Nothing is perfect but I feel alive again. I am out of bed every day and my energy is great.

I think this past week my family and friends really saw how much better I'm feeling. I've been baking and cooking almost every day and it has been therapy for me. I am glad I can make dinner for my family every night and it makes me happy to be able to contribute something after being idle for so long. I have been taking this week to prepare my Thanksgiving menu and my family couldn't be happier.

Today I went to the mall and it was amazing. I was by myself (which is how I prefer to shop) and I had not one worry about being struck with pain or needing to find a bathroom. I took my mom's laptop to be fixed at the Apple store and strolled around mostly window shopping. I did try on a couple of things at Macy's. I really wanted to buy this one dress but after not working for a year I am really in no position to be spending money (hint, hint, Liam, Mom, Dad, Ryan, Nora, or whoever else wants to buy Ellen something nice :). Afterwards I thought that realistically, where am I gonna wear this dress? But then I realized, I should be wearing a dress every damn day if I feel like it just for the fact that I CAN because I'm not as sick as I was.

I think it was this past Tuesday or Wednesday though that I had one of the best days I can remember. I got a good sleep Crohn's-wise the night before and woke up early. I spent the day with my dad like good old times. I can't describe to you in words how wonderful it felt to spend an hour browsing through Barnes and Noble with a latte in hand and not a worry about needing to give my dad "the look" that means we need to get the fuck out of here, NOW! Instead, we did our normal Ellen and Dad ritual. And being as how I hadn't hit my dad up for my standard book-a-week in 8 months, he was happy to buy me several this time.

Just the simplest things right now like being able to meet up with friends, going to the mall, and driving my car; they seem so trivial in the grand scheme of life but they are everything to someone who just months ago spent weeks not even taking a step outside her house. I am not happy that steroids has been the agent to get me there, but for now I choose to be okay with it. I feel like Ellen again. And my family is happy to have her back.

Nora

She's my best friend, she reasons, she talks me down from my panic attacks, she gives me the world, and always puts herself behind me. I don't know why I deserve her. But I love her so much.

"Sister" - Dave Matthews

Passing time with you in mind
It’s another quiet night
Feel the ground against my back
Counting stars against the black

Think about another day
Wishing I was far away
Wherever I dreamed I was
You were there with me

(Chorus)
Sister, I hear you laugh
My heart fills full up
Keep me please
Sister, when you cry
I feel your tears
Running down my face
Sister, sister, keep me

I hope you always know it’s true
I would never make it through
You could make the sun go DARK
Just by walking away

Playing like we used to play
Like it would never go away
I feel you beating in my chest
I’d be dead without

(Chorus)
Sister, I hear you laugh
My heart fills full up
Keep me please
Sister, when you cry
I feel your tears
Running down my face
Sister, sister, you keep me


I hope you always know it’s true
I would never make it through
You could make the heavens fall
Just by walking away

(Chorus)
Sister, I hear you laugh
My heart fills full up
Keep me please
Sister, when you cry
I feel your tears
Running down my face
Sister, sister, you keep me

The devil is back...

After a year of yelling at my doctor and surgeon, refusing to take steroids, I have ultimately broken down and agreed to take them. At this point I really feel like I have no other options. At the same time, I've come to the realization that this surgery was completely pointless. I could have just taken them a year ago and I wouldn't have even needed an ostomy. I could have used them to keep my flare up under control while I searched for an effective treatment. I feel like a complete failure. My plan has totally failed and now I'm stuck here with an ileostomy and steroids.

For those of you lucky enough to not know what steroids are, the actual drug is called Prednisone but it's easier to call them steroids among non-Crohn's people. People understand steroids; they understand the seriousness of what it means to be on them. Regardless, Prednisone is the one drug that every Crohn's and Colitis sufferer wants nothing to do with. Taking Prednisone means you have exhausted all other options and they have failed. Steroids mean your situation is so dire you would rather injest a pill with the most horrible side effects you could ever experience just to have some relief.

So here I am at 40 MG's of Steroids. Certainly not my highest dosage ever but just enough to bring around those awful affects that make life misery. I suspect I will start eating everything that isn't bolted down any day now. Then comes moon face syndrome which prompts friends and even strangers to inquire if you've recently had your wisdom teeth pulled. There's the acne, hair growth on your face and overall swollen appearance. Not to mention the depression one goes into when they try to come off of steroids and the mass amount of bone loss experienced from even the shortest stints on the rough stuff. Myself, I have Osteopenia in my hips and spine from my brief but intense affair with steroids in 2002. I'm trying NOT to end up with Osteoperosis and a hunch back at 25 but who knows. I made it so long avoiding this drug and it makes me so mad that I've had to succumb to this.

The funny thing is when people ask me how long I'll be on them. Is there ever a happy end with steroids? The ending is either that you've had to get surgery or after dabbling with a million new medicines which not much is known about, you've found a medicine that works. My own personal story with steroids never really ended well. As I weaned off of them I just got sick again and had nothing sufficient to treat me otherwise. Not until the discovery of Remicade at least. So here I am again, at the will of prednisone, with no end in sight.

Otherwise we are looking into another surgeon or even possibly another GI seeing as how mine won't grow a pair and state his opinion to my surgeon. I'm not sure how those hierarchies work when it comes to opinions among doctors but I can see the divide between mine and it might work out well for them but in the meantime I'm struggling and sick.

Also contemplating a return to my surgeons and doctors at the University of Maryland in Baltimore. I have a long history there and they took great care of me because they cared. I wouldn't be too enthused about the long trips down there for appointments and what not but I have realized it is a rare thing to find a group you can work with well and who you feel always have your best interests in mind. Is that too much to ask for?

The irony here is that I've been living in immense pain and discomfort for almost an entire year. Throughout that year they would never prescribe me pain meds. But hell, they love dishing out prednisone to you at high doses. I'm sorry but you can't even compare the side affects of the two. I know they worry about patients becoming addicted to pain meds and what not but I have shown I can manage it. And I'd certainly like to be taking some percoset over a medicine that makes me crazy and fat. But hey, at least I can go two hours without running to the bathroom. I guess that's the bright side.

A small update...

Well I was supposed to have a small bowel follow through done last monday. I did the prep the night before and made it to the hospital but I couldn't keep the barium down. The stuff was just too nasty and I was already feeling like crap from having nothing in my stomach and my insides torn out. Luckily I saw my doctor this week and told me that a cat scan would suffice to rule out a fistulous connection between my small and large bowels. I don't know why he didn't recommend this in the first place seeing as the state of my health isn't exactly great and a cat scan is much faster than a small bowel study.

At the doctors appointment he listened to my symptoms and along with another doctor agreed that they didn't think it was a fistula and more likely a mechanical problem with my stoma. The one doctor mentioned that my surgeon really wanted to see me, to which I retorted that I didn't understand why he wanted to see me seeing as how he really didn't listen to me when I complained before. I feel like this problem could have been addressed a long time ago if he had listened. Then the doctor said, "Well, sometimes surgeons don't like to admit that something they've done isn't perfect." To which my brother replied, "So basically, their ego gets in the way." The doctor laughed at this and I have to agree.

So I got the cat scan done today at Fox Chase Cancer Center which was great because I didn't have to travel all the way downtown when I've been feeling like crap. All in all from drinking the contrast to the actual scan, it took 2 hours. Not bad. The doctor who was looking at my scans said she couldn't see a fistula but then recommended that we stick a tube in my stoma and fill it with contrast to see if the fluid continued down my GI tract rather than come out my stoma. At least I think that's what she was trying to get at. Anyway, I didn't really get details about the results and I suppose a radiologist will study them.

I go to see the surgeon on Tuesday and hopefully we will have the results and be able to schedule my stoma revision soon. I knew it was this along and I am glad my doctor finally listened to me. I'll let you know what happens after Tuesday.

Hope and Other Ramblings

Why is it that on the verge of any decision, substantial or not, we ask the opinion of others? I believe that long before any decision is made, we have already made up our minds. Have you ever asked someone for their opinion regarding a decision to be made with two possible outcomes? Have you ever immediately decided to go with their opposite suggestion? Almost like they could have said ANYTHING and you wouldn't have considered it. I've done this before and I can't help but wonder, why?

It bothers me that I am like this but I don't necessarily think it's a negative. I think I am someone who stands their ground but I still have a bit of indecisiveness in me. I care about what my friends and family think, even if I am not going to consider their suggestion. Now, in my defense, these decisions that I rebuke in such haste are usually trivial things like what I should eat for dinner or which pair of shoes I should wear. When it comes to bigger decisions, I do take my time and consider all options but I often know what needs to be done before it is done. It's almost like I am waiting for someone to come along with the perfect argument for why I should choose something else. I will be waiting forever if I believe that a perfect argument exists. No decision is perfect.

And I've realized recently, that the perfect argument I'm waiting for is someone to offer me a miracle drug, like Remicade, that will send my disease into a deep remission. There is no guarantee I will ever find something like this in my life. My problem is my hope. I can't give up hope of this miracle. I can't give up hope of having a normal body. And I can't give up the hopes of what I imagined my life to be at twenty five.

In the movie, The Shawshank Redemption, Andy tells Red that, "Hope is a good thing. Maybe the best of things. And no good thing ever dies." I think about this quote over and over again and think that maybe hope can be destructive. It is true that hope never dies. I don't think anyone would choose having a permanent ostomy over functioning bowels, if given the chance. So my problem here is to hope for other things that will better my life. If I want to change my life and accomplish things as I say I do, then I need to hope for a successful surgery. I need to hope for a fast recovery. I need to hope for a smooth transition back into the real world. But why is this so hard?

As I eluded to earlier, I know in the back of my mind I have already made this decision. But I need to get to a place mentally where I can accept it. The only person that can help me get to that place is myself.

I always yell at people who have something wrong with them and don't go to the doctor. Like my mom who has a tooth ache and won't go to the dentist. Or when my dad has the flu and prefers to ride it out rather than take medicine. I always say, "It angers me that you won't fix something that is fixable. If I could go to the doctor tomorrow and be 'fixed' I would be there in a second." But if I look at my situation, I do have a solution. While slightly more serious and life changing than having root canal or popping antibiotics for a week, I have a solution that I can't accept. I hope that will change. I hope...