I'm still here and doing pretty well. I did have open heart surgery last Nov. 6, aortic valve replacement and doing fine. Easier than I thought it would be. UC still ridiculous, but I do go into remission sometimes, but not as often as I would like. This past 9 months have been hard on my belly too, probably all the new meds. I'm gradually coming off of them but some I will be on for the rest of my life.
Glad you're here with us again. I too have missed the "oldies" that were on this with s just about every day.
Good for you. I sincerely hope that Digestaqure will continue to work for you. I have ulcerative colitis. I am wondering if it prescribed for that too. UC is not curable but I get remissions now and then, and other times, I suffer with flares, especially Spring and Fall. But I am willing to try this if it is prescribed for UC too.
Hopefully you will keep up with your good results. If I try it, I will keep others on this site up to date in case they want to try it.
Why do we have to put up with this crapola on this exchange? It has nothing to do with these diseases and yet they get all of the space and time they want? Makes no sense to me at all and believe me, I am no longer a participant in this mess until something is done about all of this intrusive JUNK!!!! Thanks Web MD for all of your help for those of us suffering from Crohns and Colitis! I'm kidding, of course!!!!!View Thread
UC is frustrating, to put it mildly. I was dx with UC about 6 years ago, and it seems like nothings i explainable! I truly mean that. I went into remission a couple of times, and then, all of a sudden, here it comes again, no rhyme nor reason why it returns.
I have been dx with c diff 4 times....my Dr. now says it appears it is colonized. What? Can't understand that but boy, I am the lucky one, right? Have never been hospitalized with it, and the "attacks" are coming less frequent, but still, no real explanation. However, probiotics are a big help. I was on one for several years, Dr. Swanson's Ultimate Formula Probiotic, and it worked wonders for me. But now my Dr. wants me on Florastor and that has done a lot. I don't think it's something you can stay on indefinitely, but it certainly does take care of the c diff and diarrhea. I just don't know when the next attack will happen tho.
UC is, as I said before, is frustrating. And one drug or suggestion may help one person but doesn't even make a dent in this disease for another person. I have been on Lialda for 5 years and it does help, but it's so expensive and it has now put me in the "donut hole" as far as my drug coverage. Oh well, that was bound to happen.
I would only suggest to maybe try the probiotics and keep in touch with your Dr. My gastro Dr.'s nurse has been such a help to me and is always there when I have questions or need answers. She listens to me, talks that over with the Dr., and gets back to me ASAP, and I mean usually within 15 to 30 minutes.
Do the best you can and one of these days you will be surprised at how all of a sudden your symptoms have eased up and/or disappeared. Don't let your symptoms get worse without letting your Dr. know about it. No explanation tho for the problems coming and going. Keep in touch here tho..we like to hear from others with the same condition and can usually offer support and new ideas.View Thread
UC is so difficult to control, but we just can't give up. I tried about everything, except surgery. And I don't plan on having surgery anytime soon. So, diet is important, no doubt about that, and certain vitamins are also helpful. Probiotics are really a necessary part of treatment for digestive problems. They help most patients, but like anything else, they don't help everyone. But the results are well worth trying them.
I take a multi-vitamiin every day, along with fish oil. I too am on Lialda, 2 a day. It is so doggone expensive tho. I will go through my pharmaceutical allowance in another 2 months because of this outrageous cost. I tried working with the manufacturer, but we make too much money (ha ha, that is a laugh...we're retired and on a fixed income!) and by too much, I mean we are about $2500 over what they would consider giving me some help with this med. It's frustrating. So I will have to do out-of-pocket after June. Yikes!!!
So, what vitamin are you specifically talking about? I am sure there are many more Web MD subscribers out there who would like to get this info from you.
Congrats on completing nursing school. To be honest, and to use the old phrase (time flies), it seems like yesterday when you started nursing school. And defending you was so easy. You have experienced it yourself. And jan201136, follow up with your Dr. as Hanna suggests. Keep us posted on how you're doing, OK?View Thread
Hanna does know what she's talking about. She's been there done that and is in school now to become a nurse. And I am absolutely certain that she will be a super nurse. She has had her problems, had surgeries, and still persists and doesn't let it get her down. She is a positive person. I'm certain she had her "bad" days, but she continues to be positive, and you can be sure she will give you good advice.View Thread
I was dx with UC in 2008 after a colonoscopy and my gastro doctor put me on Lialda and prednisone right away. I had a severe case. I started out with 4 Lialda a day and am now on 2 a day. I gradually went from 4 to 2 with no noticeable difference at all.
I know getting off of Lialda will be somewhat difficult. My Dr. will probably say do 2 one day, 1 the next day, etc. for about two weeks. Then down to 1 a day. Then 1 every other day...he believes in SLOWLY getting off a med. I did that with my taper from prednisone and it worked doing it that way. We'll see. It's just a problem for us because we're on a fixed income and if I stay with Lialda, I will have to pay approx. $1500.00 out of pocket for a 90 day supply. We absolutely cannot afford this. My Dr. does help when he can with samples, but that usually is only about a two week supply. Thanks to cuts from drug companies, doctors do not get the samples they used to get. It's as simple as that. And our combined income is, believe this or not, $1500 over what the drug company says would allow them to assist us with Lialda. How about that? Just our luck of the draw I guess.
I have enough Lialda for another month, and then we'll see. I can get generic Lialda from Canada but my doctor says I could try it, but he says the drug companies Canada gets their generic Lialda from probably uses different fillers, which could cause me to have a reaction. He says the generic mesalamine has different fillers, in other words, cheaper ones.
This is something I have to work on. I'm in good shape now as far as my UC goes and I certainly don't want to screw that up, but if we can't afford something, that's the problem here.View Thread