Any hope for a cure?

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blitz
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Date Joined Jun 2009
Total Posts : 9
   Posted 6/22/2009 12:53 PM (GMT -7)   
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.

GDen
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Date Joined May 2009
Total Posts : 703
   Posted 6/22/2009 1:37 PM (GMT -7)   
Talking to the old-timers in the local support groups, treatment options for CD/UC are much better today than they were even 10 years ago. One doctor whose presentation I saw about IBD drugs/treatments seemed to think that additional advances will be made in (likely expensive) biologics. Maybe stem cell treatments will be developed and prove themselves too. Whatever you read or hear about, always run it by your GI before considering it.

Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 6/22/2009 1:58 PM (GMT -7)   
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.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 6/22/2009 2:04 PM (GMT -7)   
My Mom was diagnosed in 1965. I was diagnosed in 1988. I worry everyday that one, or both of my daughters will be diagnosed when they reach the same time frame as my Mom and me (one year after our first born child). BUT, I can say that the advances made have been significant. I know that if my kids are diagnosed, their prognosis will be even better than mine was, just as my life was better than my Mom's. In 1965, it was prednisone, asulfasalazine, and surgery that was about all the options. Now they are a host of options along with diet and supplements. I am very hopeful that in the future there will be even more options.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 6/22/2009 2:31 PM (GMT -7)   
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. smilewinkgrin 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.... wink
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 6/22/2009 4:35 PM (GMT -7)   
I've spent a lot of time thinking about whether or not I will ever be cured over the last 8 years. Right now, I feel the best I can hope for are drugs that control the symptoms better than they do now. Crohn's seems like such a mysterious disease. Like EMom said, we might have it wrong about CD being an autoimmune disease. I would think it would be years after we know the cause of CD, that we would even have a hope of curing it.
23 y/o Male; Dx Crohn's Disease in 2001 at age 14.
Lost 3 inches of colon and 7 inches of ileum in 2004 bowel resection.
CD returns in October 2008, Starting the Maker's Diet June 17, 2009
Current meds: Pentasa: 3000 mg; Fibercon: 2 pills 3x; Imodium: 2 pills 3x
Been on: Prednisone, Flagyl, Cipro, Imuran, Entocort, Remicade
Kyrie eleison!


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 6/22/2009 4:45 PM (GMT -7)   
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.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
100mg mecaptopurine, 20mg Prednisone, 500mg Metronidazole 3x daily, Darvocet for dessert.


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 6/24/2009 9:57 PM (GMT -7)   
UK scientists say they've found a cure for Crohn's

said...
A new stem cell transplantation therapy appears to hold the promise of curing Crohn's disease in a large percentage of patients. And the researcher in charge of a tiny clinical trial says he's confident that the breakthrough approach can either lead to a cure or long-term remission for half of the patients treated.

Prof. Chris Hawkey, a gastroenterologist at Nottingham University, has led a team that is eradicating the cells that attack the immune system--which triggers the chronic inflammatory bowel disease. A stem cell transplant kills the old bone marrow and creates a new one that produces healthy cells.

"Three months down the line I felt much better and I'm back to my normal energy levels," said Laura Hancock, one of three patients in the study. "My recent colonoscopy showed that the Crohn's disease seems to be quite under control."

"I'm hopeful that half or more of the patients that undergo stem cell transplantation may either be cured or have a long-term remission," Hawkey told reporters. "We think it's likely that about 50 percent of people [in the trial] will be cured. We are encouraged. We have a lot of patients that seem to be very well."

www.fiercebiotech.com/story/uk-scientists-say-theyve-found-cure-crohns/2009-06-24
#####################
I saw another recent article about this and it said the procedure/recovery is very painful.

Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 6/24/2009 10:59 PM (GMT -7)   
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.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 6/25/2009 3:59 AM (GMT -7)   
Here is the link to the stem cell transplant clinical trial:

http://clinicaltrials.gov/ct2/show?term=crohns+stem+cells&rank=4
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 6/25/2009 4:39 AM (GMT -7)   
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..
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 6/25/2009 5:44 AM (GMT -7)   
In my mind, I don't even think of it ever. Any advancement is just be a welcome surprise...but I do bet they find the trigger in my lifetime. Not a cure but at least something to prevent.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/25/2009 6:14 AM (GMT -7)   
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
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 6/25/2009 6:17 AM (GMT -7)   
For years, stomach ulcers were thought to be caused by stress then about 2 decades ago they found that many stomach ulcers were caused by a bacteria living in the stomach. Back then they didnt think anything could live in an acid invironment like the stomach. So I'm with some of you on a biologic cause. They just arent looking in the right places.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 10 months ago. Was on Remicade but just recently switched to Humira because remicade stopped working, B-12 injections and iron.
God Bless. Tony


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 6/25/2009 8:52 AM (GMT -7)   
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).

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 6/25/2009 1:55 PM (GMT -7)   
Ahhh...and for this we all suffer.

Actually...I'm of the opinion its both environmental and genetic. Say you have the genetic weakening but its inactive until the environmental switch throws it. This activates the disease. Actually, I wonder about how the Crohns in me seems to cause me nerve pain. Why is it that Crohns has been known for activating more immune diseases?

As for a cure...well. I'd like to think it'll happen. My sister called me up the other day to tell me about this almost cure called Remicade that her coworker is on. I had to bite my lip and listen to her tell me all about it before I told her that it wasn't actually a "cure". Just a treatment that can and does usually work just fine for most people but that it also can work just as badly for a person. That some people seem to become immune to it. And that whatever's been wrong with me isn't directly linked to my Crohns. At least...I can't figure my own personal pain to connect to the Crohns except when its linked to my stomach and lower back spasms. I know what these are. Everything else...there's no connection to Crohns for nerve pain is there? But that's my own issues. Still...maybe there will be a cure...maybe some GI will realize he should get into a lab and spend his every waking moment there so he could genuinely ease some people by developing a cure. Who knows?
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 6/25/2009 2:12 PM (GMT -7)   
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.

blitz
New Member


Date Joined Jun 2009
Total Posts : 9
   Posted 6/25/2009 3:05 PM (GMT -7)   
Iram - That's kind of where I'm coming from. Why isn't there more pressure to look for a cure? I agree that treating the symptoms only keeps all the providers and pharmaceuticals happy, but not necessarily the patients. The massive public pressure surrounding AIDS led to the huge advancements there - it's all about where the money gets funnelled. Maybe there aren't enough of us to apply that kind of pressure, but I find it discouraging that so many people accept the "no known cause, no known cure" as the status quo.

luna lovegood
New Member


Date Joined Jun 2009
Total Posts : 9
   Posted 6/25/2009 4:22 PM (GMT -7)   
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!

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 6/25/2009 4:26 PM (GMT -7)   
Joie1 said...
Actually, I wonder about how the Crohns in me seems to cause me nerve pain. Why is it that Crohns has been known for activating more immune diseases?


Mycobacterium avium subsp. paratuberulosis (MAP) has been suspected as a culprit in both T1 diabetes and in rheumatoid arthritis. What if MAP is causing all of these "auto-immune diseases" including Crohn's? It would explain a lot, methinks...

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2636876

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 6/25/2009 6:04 PM (GMT -7)   
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
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 6/25/2009 9:54 PM (GMT -7)   
Odd that you should mention the treatment for TB. TB is common in much of the undeveloped world and the symptoms of intestinal TB are very similar to Crohn's. The only difference is seen in biopsies of gut tissue obtained from a colonoscopy. The treatment being evaluated by Faustmann Labs (in their diabetes treatment trials) uses a common treatment used for TB in those countries. That is why over a billion doses of the drug have been used worldwide to date over the last 80 years and its safety and side effects are well known. It may also be why there is almost no report of Crohn's from those countries - if they treat the symptoms as intestinal TB without bothering with a colonoscopy, they could be accidentally curing Crohn's that way. A lot of coincidences here, and I wouldn't rely on this kind of story as any proof of anything, just an amusing possibility.

aim928
Regular Member


Date Joined May 2007
Total Posts : 38
   Posted 6/25/2009 10:38 PM (GMT -7)   
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
DX in 2007. Was on Asacol for almost 2 years and the Entocort for 6 months. That has now stopped working so currently on Prednisone while trying to get up the courage to take Remicade.


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 6/26/2009 1:49 AM (GMT -7)   
I have hope, I think we have to. However it's not something I'm counting on, I'm not sure if it will come in my life time. I really believe there is something there with stem cells, for a lot of diseases. I have a feeling that is where a lot of treatments, if not cures will come from.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Lexapro.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 6/26/2009 1:21 PM (GMT -7)   
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.
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