Progress or lack of progress with UC medical treatment ?

Hi all,

I have had moderate pancolitis for 20 years. In general, my disease has remained pretty consistent over the years with flares and remission periods, and luckily no hospitalizations. What surprises me is that the medical treatment has remained so consistent over the last 20 years - pred for bad flares, and 5-ASA products for remission. The probiotics I take are also pretty old-school - VSL#3 - which was developed in the late 90's (the first study I could find dates from 1999).

I really would have expected a replacement for pred in the last 20 years, which has been used for over 50 years for flares according to the CCFA. 5-ASA products starting with sulfasalazine have been used since the 1980's but mesalamine seems to date from the 90's. The basic immunomodulators like Imuran and 6-MP have been used by UC patients since the late 60's according to the CCFA.

I have only mentioned medical treatments supported by systematic studies, but of course there are plenty of herbal supplements, diets, etc. that seem to be helping people. Most of these however are not new. Gottschalk's book on the SCD dates from 1994. The first fish oil and colitis studies that I could find on pubmed date from the early 90's. The 90's really seem to have been a golden age for treatments and alternatives for our disease.

Have other people found that there have been substantial advances in UC treatment in the last 30, 20, 10, or 5 years? I am sure those on biologics like Remicade (approved in the US for Crohns in 1998, the 90's again!) would be able to respond positively about significant progress in UC treatment. It seems so counter-intuitive that the progress with respect to UC treatments might be decelerating while our scientific and medical knowledge about the disease and our bodies is accelerating.

Thus, I would expect to see more progress in biologics for UC becoming available in the next 10 years (but at what price?) and more bacterial treatments, perhaps even an off-the-shelf probiotic replicating the beneficial bacteria in fecal transplants, and more knowledge about LDN etc. I don't see a replacement for pred or 5-ASA in the near future. What do you see in the next 10 years?

Hoping for much more progress in the next 10 years,
All the best,

It's all about numbers. The number of people with UC is relatively small compared to the number of people with other major health problems. I actually think there has been much improvement in treatment options since I had my jpouch surgery in 2001. Back then the last drug of choice was 6MP. And honestly, I'm glad I ended up with surgery before biologics became a treatment option. Life is way better for me without the cycles of disease, the medications, and the diets.

Sue

Unfortunately I do not see anything changing in the near future. As Sue said, it's all about numbers. There is a lot of history in my family with UC and I worry about my boys getting it down the road. I certainly hope something comes along that isn't as risky as the biologics. I am really happy with the way things turned out for me by having j pouch surgery but it would be nice to have a real cure without having to remove a major body part!

I have seen a lot of change since I had UC in the last 10 years and now that my son has it. Maybe the drugs are the same but the treatment plans are different. More agressive treatment in the beginning-hit it hard first. No more long term pred or maybe no pred at all. They go to remicade first. Meditation and relaxation programs, nutriential programs and vitamin theraphy combined with medical options being more defined for example we learned today that while fish oil is very good most people are not taking the right amount so it is not doing them any good. I really fell that if I had all these options avaiable to me now I would still have my colon.
Oh, there is a test that recently came out that tells you your intestial DNA so they can customize your probiotics and to see if you have yeast-kidda like reblancing your flora without a fecal transplant. We have the test-just waiting till after he finishes the rectal meds. It's not available in some states.

Here's the latest on the challenges of IBD and the research being done:

The big problem is that IBD is more complex than anyone ever realized. So far, through the human genome project, they have discovered 99 loci associated with IBD. This explains, in part, the reason why treatments have such a widely variable effectiveness. Plus, you cannot assume that bacteria are the cause of the inflammation (in those who have demonstrated the association). It can just as easily be our altered immune response to the bacteria, and possibly more likely. This is why someone with the genetic tendency for IBD develops UC or Crohns after a gut infection or course of antibiotics, when the vast majority do not. The bacteria are just an environmental trigger. Currently, IBD serologies are not specific enough to really be reliable treatment guides, but we hope to get there in time.
IBD Genetics

So, the reason they haven't figured it out is because there may be so many triggers, and so many variations of the disease (probably much more than 5 or 10). But, they are working on it. The goal is to determine who is most likely to respond to a given treatment, so hopefully the correct treatment will be given at an earlier point, rather than wasting time and resources on ineffective treatments.

This information was posted by a nurse and former IBD sufferer.

Sue

What is startling now is the fact that so many young people...like children young...are being afflicted with IBD. More awareness must be brought to UC and Crohn's that's for certain.