It's about that time...

It's so damn easy to fall into a rut with this disease. I usually snap out of it swiftly but this past week was especially rough. I think there have just been a lot of emotions as of late that have surfaced after seeing my doctor in Maryland. Combined with being off the steroids and feeling like shit, it was a lot to handle. I spent a lot of time inside this week just because things were so bad that I wasn't comfortable doing anything.

So today I cracked and started taking steroids again. I always told myself I wouldn't take them if the benefits didn't outweigh the drawbacks. I didn't think they were doing much for me until I came completely off them and realized quickly that they were in fact keeping me somewhat functional. At this point I know a lot of things will be realized in the next several months and my hope is that I will only have to be on them until there's some finality here.

At this point, after spending so much of the last year in bed, I think I need to focus on doing whatever possible to have me living some semblance of a life. I know I won't be back to working until things are really figured out, but if steroids help me play field hockey every week and get me to Phillies games, then I need to take them. I've neglected my soul and my mind because everything has been so focused on the physical. After this week of laying around and getting down on myself about my situation, I need to be out again and being active. It keeps me happier and makes me much more equipped to handle the many weighty decisions I have to make.

I have indeed scheduled my colonoscopy at the University of Maryland Medical Center in Baltimore with my old doctor for May 13th. So I guess I have decided to put my trust in him again. I know if it wasn't for distance I would be making this decision much easier. But like everyone keeps telling me, if distance is the only aspect keeping me from returning there, then I should just go with it because there is nothing like a good doctor with whom you have established trust and respect. And that's what I feel like I have down there. And while I know the end result might still be a proctocolectomy, I would rather come to that conclusion with his treatment plan than the one up here in Philly.

So the next two weeks I am sure I'll start to feel better since I bumped my dosage back up to 40MG of steroids. I am hoping I can turn my colonoscopy into a weekend trip to Baltimore so I can reunite with some of my friends. We'll see how I feel. They are all such great people who support me from afar. Sometimes you just need that face to face time. And there are many faces I need to see.


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.