Still flaring. Doc says remicade.

Caddy lover....You sound identical to all my son went through.. He has had colitis for about 10 years...started at 33...took all kinda meds including Asacol, 6-mp and prednisone taper when flaring....finally went on Remicade...and it works great for him...going on his 4th year now... Hasn't had a flare since on it. Just a couple BM's in the morning,,,that's it...eats what he wants...loves ice cream,,drinks lots of coffee,,fried stuff...but is slender...Son't be afraid of the Remicade...
I hope you can take it...some people can't though, but you won't know until you try it. Good Luck

Cadillac Lover,

IMO, give it a little more time before going on remicade, after all it seems from your description that the flare is better overall than your last flare - so it seems to be better.

I think once you add VSL #3 you may get a bigger progress, especially since you are already watching your diet so carefully. Are you getting the VSL#3DS which is given by doctor's prescription?

 

peety: Not in denial at all. It's just that i'm hoping I can get back into remission w/out remicade. I'm tapering off pred because I was on it for like 4 months this year starting at 60mg. I started again at 40mg this time, tapering slow but I just don't want to mess with pred anymore. I've been on/off pred since 2008.

cra43: Glad to hear remicade is working so well for your son. Is he just on remicade or any other prescriptions? I think earlier this year my gi said I was ok for remicade.

Insofia: Blue shield doesn't cover either vsl3 or ds. Out of pocket I'd have to pay about $115 for a 20-pack of ds or about $55 for a 60 supply of vsl3. Not really sure if I can afford the ds next year, my deductible is $3500 a year so I have to pay full price for asacol & canasa till it's met :(

byebyeuc: Glad your surgery results are going well. My fiance & I have talked about surgery & if it comes down to it. I'm not in denial of surgery. We know it's a possibility for me. I just hope I can achieve a long remission.

^^ Yes I've been taking 100mg 6mp since jan. this year. Theraputic range for remicade?

Well my gi prescribed 100mg earlier this year & said my blood was ok for it.

Can anyone tell me what VSL number three is? Thanks

I say don’t be afraid of infliximab (Remicade). I admit, however, I was terribly afraid of it and azathioprine (Imuran) but now that I’m much better and still have my colon, I’m glad I made the decision to take the drugs. Now I’m not certain of the long term damage these medications may cause but surgery carries its own risks and there would be physical limitations to my life with surgery that I don't have with UC at this time, plus additional stress on my family. I do know long term inflammation leads to greater risk of cancer so there is urgency to do something. Many GI's either want to get the inflammation and sores healed or removed the organ. Taking a probiotic to reduce inflammation of mild to moderate ulcerative colitis requires a lot more probiotic than folks in here are talking IMO. From my readings, the Alberta study used 3600 billion live bacteria per day to treat the patients in the study. This is the double blind scientific research with placebo that I like to see. According to my calculations, VSL#3 is extremely less expensive as compared to any other probiotic I have seen. 42 capsules of Align cost about $35 online without shipping. Each tablet contains 1 billion bacteria and those are not all live when you take them (only when produced).   Assuming all were live, to get the therapeutic dose to match the Alberta study results using Align you would need to take 3,000 pills per day which would cost $2,500 a day. Most people take 1 pill…I cannot see this helping UC based on the comparison to the Alberta study. In comparison, VSL#3 contains 450 billion live bacteria per packet. 30 packets cost $86 online without shipping; one packet costs $2.87 and you would need 8 packets of VSL#3 per day to match the Alberta study. Your cost would be $23/day. So VSL#3 is more than 100 times less expensive per number of bacteria than the average probiotic. If your probiotic pill offers 10 billion bacteria then you're still are looking at spending 10 times more money than you would buying VSL#3. Also, VSL#3 comes refrigerated to keep the bacteria alive and there are cheaper ways of purchasing it; I used the worst case. Also, IMO putting turmeric on your food to help colitis is like throwing a few grains of fertilizer on a crop of corn. Yes, the fertilizer is good for the corn but you would not notice a difference in the crop yield. Same holds true for most other products (alternatives) people use in here. They usually have to be used in great quantities in order to reduce even mild to moderate inflammation. The dose is what‘s hard to know because studies are not always controlled or statistically engineered, yielding only anecdotal evidence. Bottom line, I always hear people say VSL is expensive but in doing the math it’s not. I know there are many different types of bacteria but this is one example offered for straight comparison. We’re using probiotics to treat a chronic illness not using them to merely aid digestion in a normal colon.

$23/day is not inexpensive but as compared to other probiotics it is by far the least expensive. 

For me it is cheap as I get a three month's supply of VSL#3DS (double strength) through my BCBS mail order pharmacy for $70. So I pay very little compared to the average person. I get huge boxes of these things showing up on my door step and put them in the freezer.

Fecal Transplant does offer promise but there is no significant scientific evidence, only anecdotal evidence and testimonials, that it works. I'm waiting for the real data to come in before going through that mess.
At this point you're just as likely to be helped using meditation or SCD as FT unless there is data I haven't seen. I know studies are underway though so maybe soon I'll see what I want to see. I sure hope there is an alternative though.

I struggled for six years with mesalimines, enema`s, pro-biotics etc etc etc. Always just one more magic pill, hoping for some relief. Did NOT want Remicade, finally achieved remission for 18 months on Imuran, but even then the symptoms were gone, but my body still felt weak like it was fighting something. When that remission ended and the prednisone started again and upping dosages etc,etc,etc I finally told my GI I was through living like this (I was a carpenter and could barely get through a days work anymore, really humiliating). I wanted a surgical referral. He talked me into Remicade first. Five weeks after my first infusion I was losing weight and exercising for the first time in years, working full days and feeling "normal". What a joy! I don`t know how long this is going to last, but I got my life back for awhile.
Just one man`s experience.