Crohns and Colitis Exchange

I'm on a daily one a day kind of vitamin, mainly for women...WalMart's brand, and my doctor suggested I find one with iron. This one has a low dose of iron. I've been on it for about four years or so. Also take Omega 3's, and, of course, my wonderful, bordering on a miracle, Dr. Swanson's Ultimate Formula Probiotic. My UC is in remission now. And while I'm struggling with Shingles now, my UC is still under control. I'm not on the Lomotil now either. Just low dose prednisone (5 mg) and 2 Lialda a day.

I am a firm believer in vitamins and/or supplements. While some doctors may not "believe"in them, I do and feel better when I'm taking them.

Switching to Swansons ultimate probiotics and swanson other supplements have definitely helped me manage my crohns better. And they have REALLY helped reduce the side effects of the pentasa TREMENDOUSLY!

arbob5 - I know that you posted this a long time ago, but I'm hoping that you'll see this message and be able to help me! I have been following your posts because you are so generous with your great advice and I've seen than you are a strong supporter of Dr. Swanson's Ultimate Probiotic Formula. Have you ever taken VSL #3? That's what I'm on right now and I can't get over the awful taste (it's a powder that I mix in with a cold drink). I would love to hear your experience with either or both of these probiotics.

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.

Which med were you on before Lialda arbob? I'm asking 'cause it's a megadose of mesalazine (which comes up with a few different names), and it might be cheaper to take the non-megadose, multi pills a day version instead.

I worry about you not taking it at all. Over the years I've varied the amount of Dipentum I take daily - and I know if I'm not taking enough as I'll start seeing blood. There's a very real chance of your colitis acting up if you're not taking meds for it (and there are horror stories to be found about sulfasalazine).

I'm very thankful that I'm in a situation where I don't have to worry about prescription bills. Years ago I added up just the med costs (left off the dispensing fees) and the numbers were scary.

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.