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
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.