Rowasa?

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AZMOM

AZMOM

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Okay this is only the second night of Rowasa and I have questions. Last night she took it better than I expected and retained it fine. My heart breaks that I've told her she can do "anything" so many tImes that she believes me..... I talked her out of going to the bathroom and squeezing it all out. Sigh......

Anyway she actually seems worse today. 4 bouts of loose stools at home + whatever she did at school. She can't remember....or doesn't want to tell me. Cried twice about abdominal pain before bedtime and refused to eat dinner.

I can't decide if it's all a coincidence or the Rowasa is making things worse. I know - I know - time will tell........ But if u have any insight, Id love it.

J.
 
Julie, I hope you begin to see some improvement in Claire! I know it's probably different for everyone, but did her GI give you any guidelines as to when you 'should' start to see improvement?
 
Julie,

I do know it can take from 3-6 weeks to work. I can imagine it might even make things a bit worse at first just because the medication could be irritating. I would call the nurse and ask just incase you are seeing an unusual reaction but looks like it is the wait and see game. :(

Tiff
 
I am a Rowasa user. I realy wish I could give you some good advice on this topic, but all I can tell you is how it works for me. It is helpfull, but at the same time I have now just put alot of liquid in the one place that dosen't want to keep it. So yes I think the medication part of it works good, but the fact that it is a liquid in there... not so much. There are days I don't know if the benefit out ways the liquid volume/bad smell/running to the bathroom in the AM. Have you looked into using a supository insted of the liquid. Much eaiser I think. Eaiser to keep in and not as much volume. Just a thought.
Wish I could help you more, sorry.
Woops!
 
Emailed doc tonight - no improvement. I'll let you know.

Izzi's Mom - Its mesalamine but in an enema suspension. Since Claire's current flare seems to be low and left, the doc is hoping this will work and help us avoid another round of prednisone.

J.
 
Ugh, hell J...:hug:

I have no experience with Rowasa hun. Have things settled at all in the past 24 hours?

Thinking of you guys. :Karl:
Dusty. xxxxxxxx
 
Is this like Asacol, or Mesalamine? I don't want to scare you, but feel you should know what happened with my Caroline. I wish someone had told me things that Could happen instead of always being hit flat in the face each time..


My daughter was 6 when she was diagnosed, and they immediately put her on Mesalamine suppositories.. which she HATED... I of course did what you did.. SIGH is right, in an effort to give the meds a try..
She developed sharp pains in her chest (said it was like knives), and we ended up in the hospital.. Multiple tests later, and some research turned up that there is a Rare allergy to this type of med, she was the 14th person in the world documented with this reaction. The meds had attacked her heart, giving her Myocarditis, and ended up in the PICU for a week, while they worked to reverse the damage to her heart. It went away after 3days.. and she can't have any meds with aspirin dirivitives ever again.
TRUST YOUR gut! if it isn't helping and she hates it, then Make them find something else. There are all sorts of things out there.. If I have learned nothing else, it is that I am in charge of her care, and I do know better sometimes..
Hope it works out ok..
 
Thinking about you and yours J...:ghug::ghug::ghug:

Sending you loads of love from across the pond. :heart:
Dusty. xxxxxxxx
 
Ehs - they're just children's chewables in the shapes of tinker bell. :)also I appreciate you sharing! Claire had beg problems with Pentasa a few years ago. Based on her initial reaction, we stopped it and she's already better. We are going to try the hydrocortisone one next week.

I'm overwhelmed tonight. Just found out my dads bladder cancer is back with a vengeance. He just had surgery three months ago so this is discouraging. He's having surgery again Tuesday and chemo this time. Sigh....,

J
 
Julie, I'm sorry you have so much going on right now. :( Sending all my wishes that Claire starts to show improvement next week and that all goes well with your dad! :Karl:
 
Damn J! Your cup of sorrow is too full!! I'm praying things get better for your gang soon!
 
Sorry Julie. :( My dad is fighting stage 4 colon and liver cancer right now and it leaves me feeling so guilty I am not there enough for him. Johnny's condition has taken so much time and most of all mental and emotional energy I don't have much left. Let alone time for my other child. Sorry I don't have any good advice just lots of compassion for you. Praying things start looking up for Claire. Tiffany
 
Oh J, I am so, so sorry to hear about your Dad. You and your family are in my thoughts and prayers mate.

Dusty. :heart:

Oh my Tiffany, such a difficult and heartbreaking time for you too. I shall have you all in my thought and prayers as well.

Dusty. :heart:
 

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