Posted on 09/29/2013 2:47:59 PM PDT by Katya
Greetings! I know there are freepers who have knowledge and experience in just about any area of interest, so I figured we could gather some info/input from you on various treatments/ success stories for Crohn's. I did a search and various interesting articles have been posted, perhaps some of you have other useful links you could share.
Over a year ago our youngest was diagnosed with Crohn's disease. Not that there is ever a good time to become ill, but this has impacted her studies and immediate University plans.
She has been under the care of a physician who has both taught and worked at John Hopkins, and is considered very knowledgeable in this field. We have gone through the typical program of scheduled treatments, none have had any effect. She is now self administering a biological, Humira.
So far nothing has helped... Pain management is the most difficult to accomplish. At this point we are open to alternative treatments etc. She is seeing an acupuncturist which her Physician also recommended for pain management. Her Gastro Doctor has also had her try various dietary changes which she strictly adhered to including FODMAPS None have brought any relief. We are considering trying the Gaps diet, as it has helped restore gut health for many people.
there was a lawyer I knew who went to GB for treatment because it was free.
Not sure what your doctor told you, however Humira can take anywhere from 3-6 weeks after the first injection to start taking effect.
I take Humira for Ankylosing Spondylitis, and have been taking it every two weeks since October 2010. For me, it was about 2.5 weeks after first injection to start noticing little differences. After my second shot at the 4-5 week mark many of my A.S. symptoms had dramatically subsided.
It was just after my third shot, approximately six weeks after I started Humira that I felt "normal." I've been taking it every two weeks since and all my A.S. symptoms are under control.
I also have a good friend who's wife has Crohn's. I'd read all the product documentation which stated it can also be an effective treatment for Crohn's and told he and his wife about it. Her Chron's disease is now well under control, thanks to Humira.
The biologic drugs are really life changing, however they don't always work for everyone. I know other folks who have tried Humira and it didn't work for them, whereas another biologic such as Sympani for example, did work.
How long has your daughter been on Humira? Have other biologics been tried or discussed?
For some reason (i read this about 15 years ago), people that eat 2 ARCHWAY macaroons have relief from Crohn’s, IBS. Must be some enzyme in the coconut. This works for me when my intestines go nuts, also peppermint oil (I used enzymatic therapy gels). My girl’s 21 year-old friend was diagnosed with this 1 1/2 years ago. It has ravaged her. After surgery recently, with 2 feet cut out (of small intestine), she is much better. She was on humera (sp?), and it did not help much. She was also misdiagnosed at first, and spent three very sick weeks in the hospital and had her appendix out, which did not stop the problem.
There are both “good” and “bad” microorganisms that live in the gut.
Read up on Candida overgrowth.
The antibiotics kill both “good” and “bad”.
When “bad” microorganisms overpopulate the gut relative to the “good” ones, you get ALL sorts of problems, including those symptoms. You can get blood in stool, IBD, autoimmune response, inflammation, allergies, etc., etc.
Natural organic non-flavored yogurt will help, a little every day. Will take several weeks / a month to start seeing some difference.
This is what taking “probiotics” is all about.
Many people have all sorts of such things wrong with them that much of the medical establishment does not very much deal with.
As information gets out, the medical industry/establishment follows along, ergo, the availability of probiotics, etc.
Read up on such things, unfortunately, the individual must do their own research. Fortunately, the information is slowly getting out there and real research happens a bit here and there.
It’s ok to take antibiotics when necessary, but must remember to keep the gut flora in balance. Of course, the medical industry is not for the most part admitting this yet, because keeping the balance gets rid of so many profitable conditions/symptoms/etc.
So sorry to hear it.
I can’t point you to anything specific at the moment, but remember seeing things on TV and on the internet that there are novel and natural treatments available that produced good results.
I suggest you do some serious research on the web, regular Google and Google Scholar — many times one article mentions something, then you can take some key words from that and find something else.
Just did a quick Google search and found that at the Mayo clinic website it says while there is no cure, it can go into long term remission, which is almost as good.
http://www.mayoclinic.com/health/crohns-disease/DS00104
“”While there’s no known cure for Crohn’s disease, therapies can greatly reduce the signs and symptoms of Crohn’s disease and even bring about long-term remission. With treatment, many people with Crohn’s disease are able to function well. “
Since it is caused by inflammation, they also recommend a number of anti-inflammatory drugs:
http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=treatments-and-drugs
Did you try anti-biotics, like Cipro — which is one of their recommendations:
“Ciprofloxacin (Cipro). This drug, which improves symptoms in some people with Crohn’s disease, is now generally preferred to metronidazole. A rare side effect of this medication is tendon rupture.”
I wouldn’t go with the immune system suppressors, except as a last resort.
Do your research, discuss them with the doctor, do go and see additional doctors.
Good luck.
Just found a very recent article about it:
New treatments help patients cope with Crohn’s
Sept 28, 2013
http://www.miamiherald.com/2013/09/28/v-fullstory/3658101/new-treatments-help-patients-cope.html
I had symptoms of Crohns about 30 years ago. A doctor wanted to schedule me to talk to a surgeon to discuss removing my lower intestines. This was well into the discovery process. Instead, I gave up sodas, coffee and completely changed my high grease diet. The symptoms never completely went away but everything works. Of course, I’m sure everything is a matter of degree. I was probably on the edge where a significant diet change made a difference. But I’d try that first. And, no cheating...ever.
Two people I know cured theirs using massive amounts of high quality probiotics and taking a chocolate “milkshake.” They both had a fecal transplant from a people with very healthy guts. Both never knew each other until the first tried it and I introduced the second to the first. Their doctors were not happy with their decisions, but as I said they are cured.
Here is a link to a non- profit organization that has a significant amount of imformation on Crohn’s disease and IBD.
The Crohn’s and Colitis Foundation of America:
WWW.CCFA.org
Start there!
Read some of the Google results for magnesium + Crohns.
I have severe IBS and increased my daily vitamin intake of magnesium. The discomfort did not stop, but it subsided drastically.
Many in the IBD/IBC forums are hailing magnesium as a miracle.
It is available OTC at most heath food locations. Types of magnesium vary somewhat, so do some additional reading on that.
“There are both “good” and “bad” microorganisms that live in the gut.”
I have found that SILVER SOL: Brand names include Guardian Silver, ASAP, and Silver Biotics have been very effective.
Silver Sol is a nano-particle silver solution. It does not interfere with any medication.
http://www.guardian-silver.com/silver-sol-uses/
Crohn’s disease is an inflammation of irritable bowel syndrome. The main symptoms are abdominal pain, diarrhea (which may be bloody, though this may not be visible to the naked eye), constipation, vomiting, weight loss, or weight gain.
Though it is an infection, it is not clear if it is caused by bacteria, a virus, a parasite, or all three. By drinking four ounces of liquid silver sol the first day and two teaspoons of silver sol per day thereafter, you can destroy all three potential causes of the symptoms. Crohn’s disease is an autoimmune disease because the body attacks itself. For this reason silver is very good at destroying pathogens without inflaming the immune system.
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I and one of my relatives got inflicted with that disease. After trying a lot of things we were prescribed Asacol. Didn’t take long and it worked wonders. Had to be on it for years....and no more problems. It was recently discontinued by the manufacturer.....our doctor has substituted LIALDA.
My aunt suffered for a long time before I told her to ask her doctor to try Asacol which finally worked and we both now take daily.
At one point mine got so bad I thought I was going to die. Lost significant weight and discomfort was bad. They finally put me on Entocort and it fixed it.
I still take Lialda.....might be worth a try. Good luck.
Stop all artificial sweeteners (aspertame, etc.) including ingredients that end in ‘tol’ malitol-sorbitol, etc
http://health.usnews.com/health-news/news/articles/2012/05/21/could-compound-in-artificial-sweeteners-worsen-crohns-disease
>> I have severe IBS and increased my daily vitamin intake of magnesium.
Both magnesium and B12 loss can occur over time leading to peripheral neuropathy among other things.
I know of people who read that coconut oil is helpful tried it and got relief. Coconut oil is available in capsules now. Also kefir or live yogurt is essential. Good luck!
You’re right about the macaroons. I found an article in which people claim to have found relief from Crohn’s eating two or three of them a day.
It could be the coconut oil, which is a fairly strong anti-inflammatory. Googling “coconut oil Crohn’s disease” brings up some interesting results. But the benefits could only be gotten from organic extra virgin coconut oil, which is available at vitamin shops and health food stores. The cheap stuff at Walmart is worse than nothing.
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