Research what do you think would help?

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gachrons
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   Posted 4/19/2009 6:43 AM (GMT -7)   
Hi Was wondering what others feel would help in crohn's and colitis research any ideas on what you feel would make a difference...lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 4/19/2009 9:00 AM (GMT -7)   
I am hoping they will find help for us with stem cell research. Actually not only help for us, but for others also suffering with horrible diseases.
Gail*Nanners* Co-Moderator for 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, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

LMills
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Date Joined Apr 2008
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   Posted 4/19/2009 9:11 AM (GMT -7)   
Stem cell and gut microbe research. I'm more comfortable with both than the current form of treatment in simply suppressing the immune system. I think that, in some cases, that's being given when it's not even the problem...I never felt better after I started taking my Align and keeping certain foods off limits, but I have been on humira for months and it's never given those results..I'm not sure how it's working either honestly because I feel better but have no signs of reduced immune system. Unless it was extremely overactive in the first place.
I still stick with the microbial environment in our gut as being the prime place to start.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 4/19/2009 9:38 AM (GMT -7)   
Research into ways to reset the "memory" of the immune system. The one obstacle to curing Crohn's is the persistence of the autoimmune antibodies. It may be that this is futile, since the microbe that causes the auto-immune antibodies to form are common gut microbes, so recurrence of generation of such autoimmune antibodies is likely.

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 4/19/2009 3:01 PM (GMT -7)   
There is still a change that adult stem cells might work.  The problem with this research is that they setup in such a manner that it is sort of bound to fail.  I am referring to Proychmal, they are not recruiting any new patients, but existing studies are going forward.
 
Radical stem cell therapy is the one that is being tried out in Northwestern and other parts of Europe.  Where the destroy your old immune systme via chemo and radiation and they rebuild your immune system from the scratch by drawing from your spinal fluids.  This is radical and highly experimental with chance of failure that could lead to fatalities.
 
Otherwise in chrons research, nothing much going on beyond the biologics, which seem to have a lot of side effects anyways.

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/19/2009 3:50 PM (GMT -7)   
gachrons said...
Hi Was wondering what others feel would help in crohn's and colitis research any ideas on what you feel would make a difference...lol gail

smilewinkgrin Hi Gail its Jenn you know i would love to hear anything new any new research really and everyone is talking about stem cell that i find real interesting if there is any new experamental drugs or programs for studies,i am always willing to try something new if its going to work that is,is there any links between Crohns and dairy products i seem to here alot about it on this site and else where that is i'm lactose intolerant anyway but is it possiable that maybe all of us aren't lactose intolerant its something to do with our disease it seems strange to me. Your Buddy Jenn.
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/19/2009 6:46 PM (GMT -7)   
Getting funding for research from somewhere other than the major drug companies!  Revamping the FDA so that is it an effective organization in actually protecting the public from dangerous environmental hazards as well as removing all the additives from our food!

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/19/2009 8:17 PM (GMT -7)   
I think it should start with our children. I think it's important to really be careful what our children are putting in their bodies. Nowadays it is all too common to eat "convenience" foods which tend to be the worst ones for our health, but it all goes back to how busy our lives are running to work, school, baseball games, etc. Whatever happened to fresh, home-cooked meals as opposed to running to McDonald's everyday? Anyway, I also think it's important that people re-think medicines. Many people run straight to the drug store when their child has the sniffles. I feel this excess in medicines each year has got to be dangerous. The industrialization of our world is a catch 22- we get new, modern conveniences with many advances in science, but we are also creating super-bugs and scary, chronic diseases.
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 4/20/2009 8:09 AM (GMT -7)   
I'm not hopeful of a cure, after all the last disease they found a cure for was polio and how long ago was that. I realy think the drug co's. would rather see a drug that helps rather than a cure. That way they make money forever. Cynical,,,yes I am, at least when it comes to big money companies or government truely careing about my welfare.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 4/20/2009 9:00 AM (GMT -7)   
There's no cure for polio.  It can be prevented through a vaccine though.  There've been plenty of diseases that have been cured.  Don't forget most cancers are cureable.  Even Juvenile Diabetes is very close to being cured.  There are serveral potential cures in clinical trials for it right now.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/20/2009 9:50 AM (GMT -7)   
Actually quite a few infectious diseases that were once likely fatal are now curable by antibiotics -- cholera, malaria, even bubonic plague. The focus however has been on the smallpox-polio model. Vaccination is basically manipuating the immune system to repel the pathogen before it settles in and starts the disease process. Orher dieases (diabetes and Crohns are good examples) use various agents to reduce damage and lesson symptoms. There. treatment is more a matter of moderating the effects of the disease without an actual cure, which I will take absent any other current possibilities.  And of course the big "cure" story of the past 50 years or so has been in cardiovascular diseases. Obsructed coronary arteries or cardiac irregularties used to be rapidly fatal and irreversible. Now we have pacemakers and stents and coronary bypass surgeries. So I am not as pessimistic as Sniper. I suspect that future progress in all sorts of diseases will come from a combination of those same proven methods -- vaccination, immune system modifications, surgery and perhaps (though I remain agnostic on this -- we've seen a lot of "miracle cures" that never panned out or reached general use) stem cells. Overall though medicine and drug research have essentially doubled the average life span in modern societies in just about 100 years, which tells me that there is a lot more to be done and considerable reason for optimism. Bottom line is that most medical advances come from basic research into how the body and its cells actually work.

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/20/2009 7:50 PM (GMT -7)   
Well said Britt.

I don't think Sniper is being pessimistic. Just a realist. I read his post as he doesn't expect it in his lifetime. Also, please remember he is a vet and hasn't exactly recieved the welcome wagon treatment from the powers that be that are most certainly due him and his family. I feel the medical community as a whole is just on the cusp of understanding how the body/cells work. I also don't agree with the generalization that is thrown on crohn's patients that "all" of us can lead a normal and productive life as the medical community stresses in our prognosis. This disease is so random in it's behavoir even amongst the mildest of cases. I think the term "normal & productive" doesn't even begin to encompass what the most severe cases of crohns endure in their daily lives. (Feel free to jump in anytime Randy). Medicine/research as a whole needs to be more broadminded in it's approach to so many different diseases and their respective treatments including mental illnesses. I would like to see more of a whole body approach instead of so many different "specialties" in my care. At the very least, this would help ward off medical mistakes caused by patients not relaying "all" of their history to "each" specialty doctor. I'm sure every patient here would love to walk into the ER without having to convey...how many surgeries, how many fistulas, how many blockages all while in extreme pain as well. We still have a lot to learn!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 4/20/2009 9:20 PM (GMT -7)   
Thanks for putting me straight Reef and Mike and thanks for the defense Hilda. Sorry I am still a cynic when it comes to a cure . My reasons are due to my experiences and as Hilda pointed out they have not been the best when it comes to good health care. I hope I am proven wrong but, I feel my life will not last much longer and I see no light at the end of that short tunnel.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/21/2009 5:57 AM (GMT -7)   
Hi I did find it interesting reading up on research on the delivery system of medications.. important as we need to get past the stomach..and I do feel gut bacteria makes for a interesting peek into the body and perhaps instead of bio specimens on the bowel they should be doing some of the stomach..also would like to see research on different foods and the effect on the bowels and stomach in mice.. I am talking stuff like wheat ,oats,nuts seeds, raw veggies ,corn the nasties that give us problems...existing on one food alone for testing.. Also would like to see a testing of all the nutrients in healthy people and people with IBD...perhaps a bowel strengtening of the bowel lining and it's effects..allergy testing for foods.Easier look into the bowels and not so hard on the system bowel cleaning..more ultra sound testing as a less invasive peek into the bowels perhaps picking up abnormal pics without the interior approach..yahoo on that one.. the physological effects on living with crohns what it feels like to have crohn's perhaps a form people could pick up at there Dr.'s ...better ways to unblock the bowels (maybe a stool dissolver) something that would break it down so that it would get past a pea size whole one can only hope and perhaps a dye that would pick up inflamation ...Ok I'am gonna rest the brain for a bit...lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/21/2009 6:57 AM (GMT -7)   
Reef, I would like to know what you mean by "cure" and where you got that information?  From what I understand there is no cure for cancer. There is remission, when one do not have active cancer after being dx with it. Hopefully one does not get it back. They say "cured" after 5 years of remission, but that is not really an accurate statement. That is what people are told for a healing process.  As we all know things can come back after 5 years, but like I said hopefully it doesn't come back.  Perhaps you know some info that I do not know.
 
As to crohns research I would like to know what exactly causes it.


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 4/21/2009 8:03:56 AM (GMT-6)


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 4/21/2009 7:32 AM (GMT -7)   
Well it depends what your defintion of remission and cure are. I'm not saying there's one cure-all but there are different cures for cancer whether it be by surgery or chemo or radiation. Sure some people can have the cancer return, but many don't. In my opinion that's a cure.

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 4/21/2009 7:35 AM (GMT -7)   
Hey gail...I would like to see some more genetic research as this is a family thing for me (we're now pretty sure my niece is either UC or CD, but she is not going to the doc yet). I also am a big proponent of alternate funding for research. I just don't know where I would like that to come from as I don't believe the US government is any more interested in research results than the pharmaceutical firms. I am a pessimist that these multinational meeting for ecology are actually effective, so I would not hold hope for governmetnal multinational groups either
Like Sniper, I do not feel there will be any major resolution in my lifetime. I just met a newly diagnosed girl in her early 20s...her grandparents bet her there would be a major breakthrough in 5 years. Although I would love that to be a reality, I still think there are too many unknowns, too many varied studies and too many money grubbing interests to come to a centralized resolution.
Aaaah i am a pessimist and a realist and a dreamer all rolled into one.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 4/21/2009 10:44 AM (GMT -7)   
Hi Habs The genetic work is being done and has contributed to more genes being found and although cure would be great I beleave that ideas come first and yes we have not got one as of yet but the research has made improves like better delivery systems of meds big for us with IBD.. it took alot of research to get that far and a big step for IBDer's..Their might be different methods and ideas involved in research. They just got to get the right plan going right? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 4/21/2009 2:02 PM (GMT -7)   
Gail, they call themselves doctors and they dont know whats in my jeans ???? Wow, what part of med school did they sleep through ? Maybe it should be gown research, as those leave nothing to the imagination. Put one on and ,ICU, has a whole new meaning. Maybe thats why they always offer a blanket in the ER. Come to think of it, Thats what I would like to see most. Research into heating the X-Ray table. That puppy is cooooold on a bare bottom . Thats why they find blocked bowels. The minute you sit on that cold table your B hole puckers up so tight nothing can get out. Heck, I sucked in enough air from the first (GASP) to shoot a catheter across the room. I could have wounded the X-Ray tech. Sorta like when the doc tells you to take a deep breath and then sticks that stethoscope,,,the one they keep in the freezer,,,on you bare back. Then he says exhale,,,,,whaaaaaaaaaaaaaa?????,, I can't just yet,,,, in fact ,,,I cant breath at all...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/21/2009 4:46 PM (GMT -7)   
Hi Sniper Don't worry they have ways of loosening up your B hole and that took research... actually I find that cool on the X-Ray table a good way of forgetting about what's to come ...lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/21/2009 8:56 PM (GMT -7)   
How about researching a better bowel prep. It's just wrong how we have to drink that nasty stuff!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 4/22/2009 9:50 PM (GMT -7)   
I thought that the mention of the potential for a cure for diabetes was an intro into some old info. The possibility exists that a cure for one autoimmune disease will have application for most other autoimmune diseases. The cure consists of destroying the autoimmune T cells. There is a clinical trial for a way of doing just that ongoing with phase I to wind up in 2010. For more, see: Faustmanlab.org
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