Any hope for a cure?

I guess I'm still in denial.  My 14 year old was dx on Dec 23, 2008.  So far she's been on Pred, Asacol, Sulfasalazine, Imuran and now on Remicade. In spite the time spent learning about CD and these drugs, I keep searching for info on a future cure.  I've read about the MAP vaccine, the Marshall Protocol, SCD, LDN, Myoconda, etc.  I'm frustrated with all of it and I can't tell what's a scam and what's not.  I read CD patients need more Vitamin D and that too much Vitamin D is the cause of many immune disorders.  Those of you who have been in this for a while probably have your own opinions about where things are headed in terms of treating causes rather than symptoms.  Maybe I'm grasping at straws, but I'd like to hear what others think.

I've had CD for 10 years. They are developing more and more treatments, but I don't spend time daydreaming about a cure. I think it's beyond my lifetime and I'm 32. I agree that we're treating symptoms, not causes. The trouble is they still don't know what causes IBD and I don't think they're getting any closer.

I still don't know what is a scam and what isn't, there are so many 'internet doctors' out there selling cures. I've heard of so many thiings that 'help' IBD I've lost track and you're list is just the surface. I've heard of hookworm, pig whipworm, probiotics, prebiotics, LDN, SCD, MAP 'treatment', Thalidomide, Wellbutrin, macaroons, Viagra(!), flax oil, salmon oil, cod liver oil, AMP, quercetin, beta sito-sterols, human fecal infusion, miracle mineral supplement, immune 26, etc, etc, etc.....It would take me 3 lifetimes to acquire and give each a fair trial.

So I usually do what my GI tells me to, just becuase I don't know what else to do.

Hi Blitz! I just want to say welcome! I'm kinda with Rider in that I don't think we'll see a cure any time soon. Far too much time and money goes to drug research for treating symptoms, not to determining the cause.

So you asked what we think. Our GI does not believe CD falls into the usual parameters of a true auto-immune disease. When he was really pinned down he told us he believes there is an environmental trigger--that it's likely infectious (he wouldn't commit to what he thought the pathogen might be). I'm going with that because that's the explanation I like. lol! He also mentioned a "massive imbalance of gut flora".

So since I don't believe it's a true auto-immune disease, the Marshall Protocol does not apply and I have my son take D3. We have also had great success with the SCD. Since the purpose of the SCD is to improve gut flora, it seems logical. This is jmho, of course!!! ...Just what I think....

I was having success with LDN until a fistula halted that (I had to take pain pills which counteract the LDN). But I've researched just like everyone else, and I beleive strongly in the gut flora balance. I am starting a new regimen of probiotics now that I'm off a big antiobiotic round.

I also think just simplifying your diet will do wonders. keep it simple. let the gut get accustomed to things. I read people bragging all the time on this website that they can "eat what they want" with a new medication. Well, I don't think we should be ABLE to eat what we want. There's a lot of garbage out there. I'm going kosher myself, with probiotics and a few supplements.

The guy who wrote up that article doesn't have a clue about the info he's supposed to be reporting (from fiercebiotech.com). The "cells that attack the immune system..." in autoimmune disease, it is the immune cells that attack other body cells. "A stem cell transplant kills the old bone marrow..." I don't think he has that right - usually it is done with drugs or radiation (killing the bone marrow). I would have been interested in whether they use the patient's stem cells or if they plan to use other sources. The method should work, but it is using an atom bomb to swat a fly. There is another method in human trials (still level I) that should work for all autoimmune diseases - it is being tried on type I diabetes currently. It involves using a well known treatment (over a billion doses used in the last 80 years) to stimulate the immune system in a specific way. For more information see: Faustmann Labs
If this is proven in humans as well, it would likely be three to maybe ten years before it is available.

I don't think that they will ever find a cure for any disease, if they did that would wipe out the pharmaceutical companies and the doctors too. I believe that they have found cures for the common cold and maybe even cancer.

I just hope that they find safer drugs for us that are not as harsh on our bodies.

Just my opinion..

I personally think a cure would be difficult. Crohns seems to vary so much from person to person. But I do believe it has something to do with the gut flora. JMHO

I couldn't agree more with all of the above posts. Now, after more than 7 years it dawned on me, that CD is not a true auto-immune disease such as RA. In the case of auto-immune disease the immune system attacks the same part of the body such as in RA causing inflammation. So, by controlling the inflammation they control the disease. Talking to another GI recently, I figured that they use RA drugs to address CD because both control the inflammatory process. He also agreed that the cause is 'environmental', but recently there are some studies that have identified genetic markers for CD. As a matter of fact, there is no 'true' CD cure or drug, we have basically taken it from various other sister diseases. So, again the key here is controlling the process that triggers the inflammation that is where the Money is and that is where the focus of the research is on. I don't think there is any major effort under way to find the 'Cause'.

It is interesting that in the case of HIV/AIDS the medical progress has been rapid, but in the case of CD there has not been much progress even the disease has been around for a long time, simply because there is no incentive to burst through with research (at least that is my take).

A couple of things - Faustmann Labs is not a private pharmaceutical company. It is a small research group working out of Boston hospital. The clinical trials they are running are funded by donations from private donors, major charitable organizations and foreign governments, largely because if the trials are successful, they will provide a cure for several autoimmune diseases that is cheap and well characterized. They have been able to collect several million dollars for the trials because the initial research has shown complete success in diabetes in rats and it also worked in eliminating the autoimmune T cells in human blood samples. The last stage is reproducing the results in humans. It looks like a cure for diabetes is a good bet, and there is cause to believe that the conditions that cause ongoing autoimmune problems are the same for all autoimmune diseases. Whether the cure is permanent is another question. That raises questions about the mechanism of genesis of such problems - which they are still arguing over.

I'm new...first post. Have just found out i have Crohn's after 20 years of struggling with chronic severe migraines, CFIDS, and going through the horrible "cure" for Hep C (but thank God it worked for me...it doesn't for a lot of peope) 3 years ago. One year ago i got horrible diarrhea, abdomonal pain, back pain, fatigue, etc., etc. and began what ended up being 50 lbs of weight loss over a year of going to about 10 different doctors (three GP's, two gastro's, 1 orthopedist, 1 pain management specialist, 1 physical therapist, 1 OB/GYN, 2 chiro's) and having xrays, MRI of mid and lower back, CT scan of chest, abdomen and pelvis, colonoscopy, endoscopy, small bowel fluoroscopy, ultrasound of pelvis and abdomen, multiple (many many) blood, urine and stool tests, and who-knows-what-else-i'm-forgetting. I'm still paying off huge medical bills from this past year (i have insurance, but it's not that great). The docs couldn't figure it out! Finally the ultrasound that i had to rule out ovarian cancer showed up granulomas in my spleen, and a friend at work said "oh, that means you have Crohn's", and i went back to the gastro for more tests, and he said....oh, yes, it looks like that's what it is. ***?! (Is that inappropriate? i'm sorry if it is...)
Anyhoo...i went on the SCD about 7 months ago...thank goodness a friend told me about it, and was able to control the worst symptoms w/o taking major drugs. I'm on the same regimen that "EMom" is on, or has her son on. ANd i'm reading a great book called _The Autoimmune Epidemic_ by Donna Jackson Nakazawa. She talks a lot about Dr Denise Faustman's work on killing the specific misbehaving T cells in the pancreas and bone marrow causing Type 1 diabetes, and how their research can hopefully be targeted to other autoimmune diseases, attacking specific T cells, not the whole immune system. It's very promising, but still far-off, research.
ANd her "rain barrel" theory of combination of genetic and environmental factors being the cause makes perfect sense. I personally have a whole bunch of environmental factors....it's a wonder i'm not an EI. Thanks for listening...i'll shut up now!

Most American GI doctors seem to ignore anti-bacterial therapy, in India for example when people are presented with CD symptoms they are first treated with anti-TB medicines (they generally regard any stomach related issue as a bacterial issue) targeted against intestinal TB bacteria. Apparently, European GI's are also open to this treatment option. But according American GI's once the triggers are activated there is very little one can do to de-activate it, hence they go for anti-inflammatory treatment. Unlike AIDS which is absolutely preventable with behavior modification, CD we simply don't know, don't know anything, why we get it, why it gets bad, and why it acts differently in different people.

Keeper,

I have been reading about this study. They use the person's own stem cells. The article I read said it is basically like resetting your immune system. You are in the hospital for a very long time while this procedure is being done.

Here is the article
http://www.medicalnewstoday.com/articles/139774.php

The stem cell approach would likely work and if they use your own stem cells, it avoids the anti-rejection drug problem. What I don't like about it is the need to destroy the bone marrow. It leaves you with little immune defense for a fair time and is a fairly drastic procedure. I guess that is why you are in the hospital for a long time - danger of common infections becoming lethal. The method would also have to destroy the T cells in order to remove the autoimmune memory - and possibly other immune cells. If they do that, your built up immune system will have lost its record of prior infections. You would be prone to all the childhood illnesses and would need all your immunizations redone. I would want to see the results of following anyone who had that done for several years before I might think about doing it myself.