Out with the old, in with the...old again

Oh the dramz...

I had an appointment with my old doctor in Maryland on Friday to get a second opinion regarding surgery and have a fresh (but old and familiar) set of eyes look at my situation. I thought it would be useful to go back to him because he hasn't seen me in two years but yet I trust his opinion and he is familiar with my disease.

I am really, really glad I went back there. Aside from the familiarity and professionalism of the practice, I feel like my old doc brought something refreshing to the table, listened to me, and had a definitive course of action that didn't simply involve recommending a proctocolectomy for the lack of a better plan. I was really convinced he was going to agree with my doctor here and tell me that I needed to accept defeat. But he didn't.

He has a couple of opinions about what could be going on which he thinks I should explore before completely giving up. I think his ideas are very rational, which makes me more eager to try them.

I won't even try to explain it myself, but my doctor thinks there could be a possibility I have diversion colitis. The treatment for this is to irrigate my stoma with short chain fatty acids, a nutrient my colon doesn't receive right now since there is not substantial flow there. The hope would be to get my inflammation under control and eventually be able to reverse my ileostomy. He also wants me to get a colonoscopy soon because they will be able to tell right away if my problems right now are simply my Crohn's acting up or in fact diversion colitis.

If the irrigation doesn't work and it appears to be my Crohn's acting up, he thinks I should go BACK to Remicade along with a drug called 6-MP I used to take a while back. I hadn't even thought about it till he mentioned it, but once I started seeing my doctor in Philly I stopped taking 6-MP because he didn't think it was doing anything beneficial. While I stopped taking 6-MP months before Remicade stopped working, there have been many studies to suggest that taking 6-MP with Remicade indeed improves its efficacy. His thinking is that I should stick to something that has proven to work in the past while tweaking the other drugs used in tandem.

So now I have a few things to think about. I think I've officially taken surgery off the table for the time being. I have to figure out if I want to go back to my doctor here and hope he will consider the suggestions that I've received without being offended that I went and saw someone else. Or do I want to start commuting to Baltimore again every time something needs to be done?

If this is in fact diversion colitis I will be pretty pissed at myself. I was sicker than I've ever been in my life last year because I didn't want to be on steroids. I had an elective surgery that I was told would improve my life and it didn't. And the very same purpose of that surgery (to not have shit flowing through my colon) could possibly be MAKING me sick again. In the end I am still searching for a resolution while dealing with a crappy ileostomy and steroids.

Can you ever win with this disease?

Oh, the good news about having an ileostomy? Colonoscopies requiring only fasting! OMG!

The in-between

Lately with this in between phase I'm in, I can't help but imagine how much my life would improve post-surgery. I guess I'm thinking about it more and more every day in a healthy way. If I decided to have surgery I think I'd be okay with it because I've come to this conclusion on my own and not feeling as though I'm backed in a corner and it's my only way out. To imagine the rest of my life never having to worry about pain and medicine is actually encouraging. I think about how well I am coping right now at 50% and if I could truly be "Chrons-free" there is no limit to what I will be able to accomplish.

I'm torn because of doubt, though. Some people tell me I should at least attempt treatment with Cimzia because it would suck to have doubts later on if I didn't try everything. But I think doubt is natural and inevitable when doing something so drastic at 25 like removing my colon and rectum. I am sure ten years from now when some revolutionary treatment comes out, I will wonder if it would have worked for me and saved my insides. The question is, would I rather have doubt about what could have been treatment-wise, or what my life could have been if I had opted for surgery sooner. And right now I am honestly considering that the prospect of losing out on my twenties is a much heavier burden I might carry one day.

Just some random thoughts as I get closer to next week when I'll get a second opinion in Maryland.

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.