What do you mean by "supposed to take Lialda"?
I have a bottle of Lialda sitting in my cabinet. I just changed doctors to be seen at the Hopkins IBD Center. My new doctor said I can try to take Rowasa PM and Canasa AM for one month. If it doesnt work, he will add 2 pills of Lialda. If that doesnt work, it will move to 4 pills in the AM. Right now, I dont take it because I am nursing a baby. I know both Rowasa and Lialda may transfer to breastmilk. I've been told it is less likely with rectal meds.
Are you actually on prednisone now or have you taken it before or have you not taken it yet (it's not in your signature)?
I have asthma also, so I have taken prednisone "bursts" for 5-7 days and it makes me a complete nut job. I hate to admit it, but I have a Generalized Anxiety Disorder, and it makes my condition so much worse.
What are your current UC symptoms?
Right now on the canasa and rowasa, I have no symptoms. If I miss a day (which thanks to your sage advice I try very hard not to do. thanks for that by the way, my last two doctors never mentioned to me that I needed to take the meds continously. one even refused to give me a ballpark answer for how long I'd be taking them.) anyways, if I miss a day or two I have a bloated feeling, blood in my stool, urgency, and an sore/irritated bum. Mostly it feels like someone sandpapered my bum and the tract that precedes it. I dont know if that makes sense to you, or if that is too graphic.
Have you been getting better?
I do feel like I am getting better. I had to ride out intense D after starting rowasa, but it has improved and my energy is back. I have way less abdominal pain/feels like bloating. I still have to avoid certain foods, but I think that will always be the case.
I am glad you mentioned reading the resources. I looked at it once, and I became overwhelmed by all the protocols for supplements and what not. I have no idea what supplements to take and right now I am too sick to be able to work, so my family is living on one income. I dont have extra cash for probiotics, supplements, etc. I am going to ignore what I dont need and read the rest. Thank you for your feedback and encouragement. I think that you are someone who could be very helpful to me because you also have proctosigmoiditis. Thank you so much for your time.
Also, great advice to find a doctor who will work with you. I left my second doctor last week because he was hell bent on me going on pred for 4 months. The weenie left a voicemail that he was calling in an RX after I called to ask a question about
rowasa. Then when I called and said I had concerns and wanted to talk with him about
the risks and benefits, the D-bag sent me an email about
how I was non-compliant patient. You cant call me, but you have the time to send me an email about
noncompliance?! Moving on.
Post Edited (AlohaYankee) : 6/12/2014 9:18:31 PM (GMT-6)