Uceris update- clearly quite systemic on me now

Sorry to hear that Probiotic. So you don't want to give the amino acid therapy a shot or any other alternative treatments. Sounds like you are just tired of fighting the battle at this point and want to go ahead and move on...?

I agree about the side affects. I most certainly had an extra intestinal reaction the first time I took Entocort.

Soystud- do you really think anyone will really know whatis causing our UC any time soon? It's easy enough to hypothesize that this or that is the cause, but ultimately, all this stuff is just discovering things that can aggravate or contribute to what is a complex, multi-factorial disorder that is still horribly idiopathic (aka doctors dont really have that many clues if any). I once had a ten year med free and 98% symptom free remission during which I pursued no therapies at all- took no probiotics or supplements, no special diet, nada. This disease has a mind of its own to a considerable extent. As someone who has for over a decade now doggedly pursued every lead, has had several shelves full of 3 inch binders with pubmed papers and full texts on every lead conventional and alternative, I have started to come full circle now to what a GI- one whom I hated- said some 14 years back- that for the most part, supplements and alternative therapies are like candy comared to drugs- very very weak. Drugs of course are stronger but have side effects, but the DD can be so strong that "candy" treatments are like throwing a pebble in the ocean. Amino-acid therapy? Whatever- sounds like just another dead end to me- But to know if some of these things will work on one personally, one has to pursue them for 6+ months. Even then, IBD has such waxing and waning involved in its course that a single result proves nothing- so to really try a few good natural therapies could take many years.

There comes a point whe one needs to move on with ones life. And anything short of total med free remission, with a sick colon, just means a continuing energy drain and the constant fear of the next big flare. (Anything short of a full total remission is a guaranteed reflare really).

Last but not least, we should all read books like Nate Silver's "the signal and the noise" as he discusses the perils of big data. A huge percentage- I forget the number but it was way up there in the 85% range or so,of medical studies, in one controlled meta study (itself subject to the same error), could not be duplicated when others attempted to oerform the exact same experimental study. The reasons could be many- conscious or more likely unconscious bias due to funding or career motives by the researchers in the study design etc., but also, as Silver points out, because the hazard of big data is that the ratio of noise to signal spikes way way up... Most "promising" studies or developments are now just noise, and dead ends.

If we lived forever we'd have time to try and reject every dead end but for the time being we generally expire somewhere before a century of life, and I dont plan on spending all the rest of mine self experimenting on alternative therapies- fifteen years is enough for me. I do wish everyone doing this stuff well though, and I will be at it anyway to try and prevent/minimize crohns, cancer, and myriad other diseases in the rest of my body afterwards, but I have had it with trying to deal with this neverending IBD. Some bet fed up in less than a year, some never (perhaps because 5ASAs or mild symptoms allow that option), but for me it is a decade and a half of trying everything to no avail while becoming increasingly steroid dependent- enough is enough.

Probiotic,

I'm sorry you've had to go through this whole ordeal. I'm leaning towards surgery as well because I don't think there is a therapy out there that will put my colitis in remission. I suppose we can hold out for MLN002, but it seems like it's a good couple years away.

Keep us updated on how your surgery goes.

I know you may be feeling a bit "defeated" but try not to look at it that way. You are kicking UC to the curb and you won't ever have to deal with it again. You are going to be amazed about how good you are going to feel with the source of what is making you sick gone. Plus the fact that you won't have to be on drugs anymore either. Those drugs used to make me feel just awful. It's so nice being free from all of it! Just trying to send some positive thoughts to you because I remember those feelings before surgery all too well. It's not fun facing it but in the end, you are going to be so relieved. :)

Scary about you crashing after forgetting to take the Uceris...definitely something for those who are on it to note bigtime.


I don't doubt that it's a lonely situation making the decision to have the surgery. While there are those who are a huge support, it's you going through it. But I would truly trust those who have shared their experiences...the virtual support is always there.

I, personally, doubt they'll ever find a cure. Maybe different meds to maintain, but as we all have seen...everything has its side effects and not all are able to use them.

We have UC...when our colons have had enough and don't respond, we have no choice but to excise it and move forward without it.

Best to you...always!
q

On doctors curing diseases:

chris rock said...

"Doctors don't cure sh1t! They don't cure sh1t! The last disease doctors cured was polio, when's the last time you met someone with polio?"

"Aint no money in the cure. The money is in the medicine as that's how you get paid, on the comeback. That's how a drug dealer makes his money on the comeback. That's all the government is, is a bunch of mother****ing drug dealers on the comeback. They aint looking for no cure. They're still mad on all of the money they lost on polio."

iPoop said...
On doctors curing diseases:

chris rock said...

"Doctors don't cure sh1t! They don't cure sh1t! The last disease doctors cured was polio, when's the last time you met someone with polio?"

"Aint no money in the cure. The money is in the medicine as that's how you get paid, on the comeback. That's how a drug dealer makes his money on the comeback. That's all the government is, is a bunch of mother****ing drug dealers on the comeback. They aint looking for no cure. They're still mad on all of the money they lost on polio."

I think this conspiracy theory is pretty disrespectful towards all those researchers working towards cures of diseases. Even if we would say that everyone that is working in Big Pharma is evil you still have all those researchers with government funded grants or researchers at schools.

I don't think many of them get into science for the money because it is pretty crapty compared to the effort put in.

For Probiotic:

I only know one that have proceeded with the surgery and she says it was one of the best decisions she has ever made i her life. Only regret she had was that she did not do it earlier.

quincy said...

I, personally, doubt they'll ever find a cure.
q

darth vader: your lack of faith disturbs me... /darth vader


I bet you in 50 years they have the cure... wanna bet?

I just read through this and wanted to comment on something Pro said. She said that her one GI compared natural therapies to a candy (in strength when compared to medicine). My GI said something similar regarding VSL#3. I was so far off the charts in terms of response that she had never seen VSL#3 help someone like me. However, it did help some of her less severe patients.

well, polio's on the comeback because some people don't see the value in vaccines.
And I'm sure the doctors cringe at that fact.

q

Can someone explain the amino acid therapy, or tell me where I can find more info on this?

80%-95% ???? that is some hind of hogwash made up wishful thinking number.

there seems to be some benefit for some people in supplementation to the meds. Results have been mixed in a number of studies. Research is continuing.

www.ncbi.nlm.nih.gov/pubmed/19572337

my attempts to use oral forms of glutimate have all given my lots of slimey diarrhea. I am closer to remission now, and plan to try a lower dose along with a low dose of slippery elm. Both gave me more diarrhea when my flare was bad, but I think the glutimate might help healing and the elm might help control some bleeding.