Updates...
Tuesday, February 27, 2007
I saw my GI doc today. All week I've been so happy that I've been able to decrease my Predinsone from 40 mg/day to 35mg without a problem. But, two nights ago I started waking up drenched in sweat (a tale-tale sign that things are sliding) and my system was all messed up today. I told the doctor and she thought I just wasn't doing that well to begin with and what I now consider "normal" is not good enough. Anyway, she wants to start me on Remicade. I'm finally at the point where I've run out of treatment options and it's one of those things where we hope Remicade will work. If not, then they may have to surgically remove my colon.
Of course, I was in tears. Remicade (chemotherapy) seems like a big deal - maybe because it's my last step before surgery and I'm only 31 (never mind that I was perfectly healthy a year ago). Anyway, I'll be going to the infusion clinic for four hours each time.
I hope it works. I hope hope hope it works. I has to work.
On a (sort-of) different topic...
I'm part of a group of twenty or so women who all had babies around the same time and met at a post-partum hospital class. We still get together weekly and four of the mothers are pregnant with their second children. I'm happy for them, but at the same time I'm a bit jealous and sad because it's not me. Not that I want another baby right now. I just want the option in the future.
If I'm lucky enough to get better I don't know if I want to risk my health by having another baby. At the same time, I don't want Lilly to be an only child and I would like to have more when she is three or four. My GI doc says I need to be symptom free for a least a year before we think about having another baby and that my UC could get better, stay the same, or get worse.
Had I known that my pregnancy with Lilly would be the only one, I might have appreciated it more. Maybe I would have bought some more cute maternity clothes and appreciated how cute I was. Maybe I would have smiled rather than rolled my eyes each time someone told me I looked like I was about to pop. Maybe I wouldn't have complained as much about the morning sickness or how uncomfortable I was. Maybe I would have taken more pictures. I guess the bottom line is that want to be pregnant again sometime. It's a special time that goes by so quickly and I want to savor it.
Anyway, if Remicade works, I'll be on it for the rest of my life (or until something better comes along). It's classified as a class B drug, but there isn't enough information to know if it's safe for pregnancy. The other chemo drug I'm on has conflicting data but I have to take it so that I am less likely to develop anti-bodies to Remicade.
I guess the bottom line is that I have a good life. I have a wonderful husband who loves me (puffy cheeks and all), the most amazing baby girl who is now walking, my wonderful mother living with us, an amazing house, friends, extended family, a warm bed to sleep in, and lots of yummy food to eat. And, as far as illnesses go, it could be worse. I could have a fatal brain tumor or something. All I have is Ulcerative Colitis. And even though it's been difficult to manage, I will learn to live with it and whatever restrictions it places on my life. I still have a great life and appreciate all the good things around me. If I can't have another baby then thank G-d I had Lilly before all this happened. She's amazing and more than enough to keep me busy.
posted by Avorie @ 7:00 PM,
6 Comments:
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At 4:17 PM,
said...
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My sister has UC, was diagnosed about 2 years ago. She's 19. It came from having her meningoccal C (sp??) vaccine. She's on tablets at the moment that help keep it at bay, and is on 40mls of Aloe Vera juice which stops the bleeding and helps soothe the inflammation.
Stress brings hers back (her last remission only lasted a couple of months) and she's still trying to find foods that she can eat that will not cause any kind of reaction. Last time she was in the hospital, they thought then she'd have to have the removal surgery, but the inflammation ended up receeding enough that she didn't need it.
I feel for what you're going through, and I hope you get into remission VERY soon. -
At 4:45 AM,
Angela said...
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I'm amazed at your great attitude about all of this. Good luck with the new meds!
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At 11:43 AM,
Amanda and Tim said...
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Sorry I'm so late in commenting - my internet has been playing up this week big time!
I am constantly inspired by your attitude to all that is happening. I think of you lots and hope and pray that you will be well and that things will get better for your healthwise very soon. -
At 10:13 AM,
Indie Mama said...
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Hi--
I just saw your post and I must say it brought tears to my eyes. I myself had a horrendous pregnancy and am just now coming to terms with the fact that this little girl may be my one and only.
Also, my sister has UC and she's coming to terms with the fact that prenancy may not happen for her at all. (So far she's she's been on/off Prednisone, but remains on immunosuppresents.) She is REALLY happy to be off the Prednisone! I hope the Remicade works for you.
All the best! -
At 2:50 AM,
Amanda and Tim said...
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Just wondering how you are and letting you know am still thinking about you!
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At 11:57 AM,
Isabel said...
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You are an amazing woman and I'm in awe at your positive outlook everyday.
