11.06.2009

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.

2 comments:

Loo Loo said...

Thanks for reading my blog ellen! it was great to get some feedback.

I know I tell you this everytime I cooment, but you are always on my mind and in my prayers.

if you are feeling up to it I would love to get together with you and anne sometime in december or early january. Let me know what you think.

Ellen said...

Thanks, Grace.

I'm gonna shoot you an email soon and figure out what's going on and if you'll be home for the holidays. Miss you as always and appreciate the support.

Ellen