I am a bit upset. What has happened to this exchange? It used to be so informative, full of suggestions, ideas, and making good friends who are suffering the same as you are. I used to check the discussions here at least twice a day, and there were always new ones.
I just cannot believe where everyone has gone, and why. It is boring, nothing new, and I would do just about anything to get this exchange back to where it was.
Does anyone else agree with me? And what can we do to get it back to where it used to be?View Thread
I agree. And it is a shame, because a lot of people out there need help and answers to questions, and they are unable to get the information they need. I used to go on this site at least 2 to 3 times a day, but if I try twice a week, that's a lot. I just don't know what can be done with it.
Good to hear from your Hannah. Hope all is well with you. Merry Christmas and a wonderful, happy, healthy 2015!!!View Thread
Hi Hannah...it's been awhile. My neighbor is a PA to a gastro Dr. and she agrees with what you posted 100%. She also said there are so doggone many untruths out there about Crohns and UC, and they deal with their patients everyday, correcting the "rumors" they have heard.
I'm doing OK with my UC....fighting c-diff, but that's about over now thanks to Vanco. Wicked stuff but it does the trick. Don't know where I picked it up but I know it is quite common with UC patients. Same as with Crohns patients too?
I can only say a patient should go to their physicians and get the right info on what they're dealing with. That's the best and only way to go.
Again, good to hear from you again Hannah. We use to be quite busy on this site, right?View Thread
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.
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.
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
Hi: I have never taken VSL#3, although there have been many posts here from those who have taken it and some good and some so-so reviews of it.
I know that probiotics do not work for everyone, but I can only pass on my results. I am still on them and will probably be on Dr.Swanson's forever. They work for me. I am, however, trying get off of Lialda. It has helped me, but it is very expensive. I am on medicare and social security and my yearly pharmaceutical "allowance" will be used up by June because of Lialda (all of my other meds are generic) so to go into the donut hole in June is not something I want to do. My gastro doctor will probably prescribe Sulfasalazine. It is generic and is highly recommended for ulcerative colitis. It can cause kidney problems so that has to be monitored regularly.
I try to watch my diet, and sometimes I'm successful and other times I "give in". But things like salad and fresh veggies and fruit are a no no. I can say tho that I haven't had a severe flare (knock on wood! Hope I don't regret saying that now!), for quite awhile. Spring is around the corner so that is usually "flare time".
I wish I could give you more advice, but sometimes this is an individual thing...what works for some doesn't work for others. Also, a friend of mine with Crohns was advised by her doctor to try FloraStor probiotics. They're over the counter. Most doctors do recommend them. I don't think they're a long term thing tho like Dr. Swanson's are. But they worked very well for her during her last flare.
Let's keep in touch so we can compare notes. That's what this site is all about. It's great. Look forward to hearing from you.View Thread